Spousal Care Giving

Hoping to get out....

2011-05-03T09:36:00.002-05:00

Dear Hubby and I have been talking about me needing a break. My last overnight time away was a trip to San Antonio with my friend, to attend the Women of Faith Conference. And, that was last October.

We are discussing when and where I should go. I'm planning on one night away. I have family nearby that I could visit. And, I could take a friend with me. But the truth is this: I need some alone time. I am with someone almost every moment of my life. If I am alone, I'm usually in another room of the house. :)

Because we have to schedule to have someone here with Dear Hubby, it's not as easy as making plans and leaving. There are people to consult, favors to ask, arrangements to make, etc. And, thus far, it just hasn't worked out like I hoped.

So instead, and until I can take that little two day respite just for me, I'm planning little outings. Tonight, my daughter in law's sister is having a wedding shower (we are close friends with the entire family). She is getting married this summer, and the shower is just about 20 minutes from here. I'm hoping to attend. There will be people there I haven't seen in quite a while, so that will be nice. Plus, I'll have a bit of a break too, and that will be nice. :)

Windy day....

2011-05-01T10:59:00.002-05:00

and we're still praying for rain. Yesterday, I was going to get out and water again, but decided I would wait since it looked like it might rain.And, yes, we got a few drops, but just enough to make the deck look spotted.

So, this morning I went out and spent my 45 minutes in the yard, watering everything. I enjoy listening to the birds and feeling the breeze. And, I pray. For grace for the day...to do what needs to be done. For peace when I begin to freak out a bit (yeah, I do that sometimes). And, for genuine love. Not the pretend stuff.

No, we haven't gotten any rain, but in some ways, that's good. Any opportunity to enjoy the creation of God and spend time talking with Him is good.

And, for those wondering, my squash, cucumber and bell pepper plants are growing like crazy. Hope they produce fruit.

Happy Easter!

2011-04-24T08:12:00.002-05:00

He is risen!!!!

Staying busy....

2011-04-17T14:46:00.003-05:00

in the yard and in the sewing room. That's what I've been up to lately.

Dear Younger Daughter and I are starting an herb garden. I use lots of fresh herbs when cooking, well, when I have them on hand. I got tired of paying $3 for five sprigs of rosemary, when I could buy an entire plant for that price. And they don't keep for long either. I've had to throw quite a bit out. It's like throwing away money. I bought my rosemary plant for $3.50. Very nice......

We have rosemary, oregano, thyme, parsley, sweet mint, and basil. Can't wait til Monday, when Dear Younger Son helps me put in the beds.

We also picked up a tomato plant and a bell pepper plant. I think I may end up picking up a few more plants on Monday....we'll see. :)

And, if you read my quilting blog, you'll see that I've been sewing up a storm. I've finished three quilts (one lap size, one wall hanging and one table topper). And, I've spent most of the day today in the sewing room, having lots of fun.

Dear Hubby seems to have hit another plateau and we're dealing with his limitations pretty well right now. He's staying busy during the day on Facebook, writing encouraging words to his many friends. It's slow going, with him typing one finger at a time, but he's faithfully doing it.

Hope you all find a few moments today to enjoy a bit of sunshine....well, at least here in the south the sun is shining. All our curtains are open and the mornings and evenings are pleasant.

2011-04-07T10:49:00.002-05:00

...for he hath said, I will never leave thee, nor forsake thee. Hebrews 13:5b

I'm so glad that my God will never leave me or forsake me.....
even in the darkest days, and loneliest nights, He is there.

You're gonna miss this

2011-04-01T10:56:00.003-05:00

Before you read this post, please watch this video.

Yesterday, I hit a bit of a rough patch. Nothing major, just a couple of times rescheduling our aide, a bit of extra work, less sleep, and such.

And, I had an unexpected rush of memories and a look into the future all at once this week. You know, one of those experiences that you aren't expecting. Seeing something that reminds you of the reality of your life and the fragility of the one you love.

Anyway, after having lunch with my youngest yesterday, she put a song on in the van, the one I shared above. I've heard it before. Always makes me cry. I remember the events in my own life....wanting to grow up, the early years of marriage, having little ones. And, yes, I miss it.

But that afternoon, when things settled down, emotionally and busyness wise, I had time to think. I often find myself frustrated over little things in life, in caregiving. Having my sweet husband wake me in the middle of the night, or staying up way later than I intended, because he can't sleep, or staying home for days on end because the caregiver canceled, or I just can't get away, or having to change sheets, wash hair, on and on.

I get tired and cranky. I complain at times. I feel cheated.

And, then the words to this song hit me. Is it possible that although these times, right now, are difficult, and frustrating, are THESE the days that soon I'll miss?

Am I going to miss it? Are these the days that I should be savoring and enjoying? Yes, they are. I know now that high school was a fun time. I know now that those early days of marriage were precious. And, now, I understand that babies grow up too quickly and today, there are times I long to have those precious children under my feet, making messes.

So today, when my sweet hubby calls me, I'm going to treasure it. I'm going to go to with love in my heart, and know that someday......I'm gonna miss this.

Getting it all done.....

2011-03-29T17:40:00.003-05:00

I have lots to do everyday. We home school our youngest child. (The older three have graduated.) I have laundry, dishes, cleaning, organizing, cooking, meal planning, prepping for visitors, not to mention caregiving. There is shopping, balancing the checkbook, helping our adult children with decision making, investing in relationships, answering e-mails and teaching our youngest daughter how to keep a home.

It's a huge responsibility.

There have been times when I haven't done these things. A time when I was so "under the circumstances" that getting out of bed and brushing my teeth were just too much. I remember a time, not too long ago, when I felt very overwhelmed and frustrated.

But once I dealt with the emotions of caregiving, being a wife and mother, the loss, the grief, etc. and once I learned to accept things the way they truly are, once I learned gratefulness and got in shape mentally and emotionally, I've been able to deal with life once again.

Sure, I still get overwhelmed. And, I still get frustrated. But, I am able to do the things that have to be done. I am no longer non-functioning.

And, now I even have energy and time to do the things I love. I've started reading again. And, I've started quilting too. And it feels really, really good.

2011-03-25T09:27:00.000-05:00

"God never withholds from His child that which His love and wisdom call good. God's refusals are always merciful -- "severe mercies" at times but mercies all the same. God never denies us our hearts desire except to give us something better."----Elisabeth Elliot

Grace and Peace

2011-03-23T15:38:00.002-05:00

I have been amazed at the transformation in my life over the past 11 years since diagnosis. I've been through denial, guilt, anger, frustration, depression, heartache, turmoil, and fear.

Elisabeth Elliot once said, In acceptance lies peace.

I struggled for many years in wishing things had turned out differently. I felt we had been robbed. I felt cheated and sometimes even abandoned by friends, family and God. I was alone and lonely.

And, then slowly, ever so slowly over time, I came to accept this life. I came to accept this illness. No, I don't like it. I hate MS. But it is what it is. And, God has allowed it. I've come to rest in the fact that nothing happens by accident. I've come to see that all things are in HIS hands. And, in this acceptance, I've found peace. And, I found HIS grace to be sufficient.

I don't always feel this way. Some days you might see me and question my sanity, but under it all, there is a sense of peace.

HIS hands are on me. HE loves my sweet hubby more than I ever will. HE has my children in HIS hands. And, I can rest. I can rest in HIS grace and peace.

Praying for grace and peace for each of us, every day.

Remembering

2011-03-22T10:47:00.004-05:00

October 1999, our family went on our annual trip to see my dad in Arkansas. Each year since our children were babies, we drove 400 miles to see the changing of the leaves. We would visit my dad and stay with him and take day trips to the nearby Ozark Mountains. We hiked trails, visited waterfalls, took scenic drives and watched as our children discovered scenic vistas.

Dear Hubby had been struggling with fatigue and seemed to have some issues with his knee. The previous year, on our annual trip, he'd barely made the mile and a half "hike" (which was more of a walk on even trails) called Lover's Leap. Toward the end of the trail there was a natural staircase composed of huge boulders. Our tiny three year old was strapped onto Dear Hubby's back and I watched at the bottom of the staircase with the other three children and watched him wave back and forth. He seemed unsteady and terribly weak. It scared me. I took our baby girl from him, strapped her on my back and all of us helped Dear Hubby off the trail. We finally made it back to the vehicle. I questioned him asking, What was that all about? He had no answers and just said, I don't know what's up, I'm just so weak. That was also the trip where he fell while walking along a rocky river bank. Strange.

So in 1999, we were determined to still make our annual trip, but instead of our usual hikes, we were focusing on scenic drives. We had learned to adapt to this weird weakness. Dear Hubby was still able to do a tiny bit of walking, as long as he had places to rest. As we drove through the mountains, we spotted a new state park we'd never seen, and we decided to check it out. We drove around inside the park, and one of the kids spotted a sign for a trail to the "natural bridge". We discussed what that meant, and they wanted to see it. Upon closer inspection, the "hike" to the natural bridge was just 1/3 of a mile. This trail was handicapped accessible, wide paths, paved with peat gravel. It seemed pretty easy and Dear Hubby said he would try. We started on the trail, and watched in horror as he moved from tree to tree, leaning on each one for support. Still within sight of the vehicle but still on the trail, there was a bench and he threw himself on it. He couldn't do it. He couldn't make the 1/3 of a mile trek to the natural bridge. He suggested that me and the kids go ahead, see the natural bridge and return. He would wait there. I told the family, No, if dad can't go, let's not do it. This is a family vacation.

What I didn't say was that I was terrified. Something was seriously wrong with my 38 year old husband. We got back in the vehicle and drove back to dad's. The rest of the trip, we drove scenic drives and didn't talk about what had happened.

I came home and got on the computer, searched in the internet and found very, very little medical information. Remember in 1999, the internet wasn't anything like it is today. I took an afternoon and visited our local library. I sat down with medical reference books. I couldn't check them out, so I sat and read in our library. I followed the information, and very quickly discovered that all of my Dear Hubby's "issues" seemed to be neurological. Searching through illnesses and diseases that cause neurological symptoms, I narrowed it down to one disease. And, I as read, I saw my husband in that book. Things began to make sense. Things we'd never related to his "weakness". The eye trouble, the weakness, the bladder issues, the uncoordinated movements, everything.

The Monster began to emerge from the hazy fog, and it had a name. Multiple Sclerosis.

I knew then, that my sweet husband, who had been ignoring my advice to see a Dr. HAD to make an appointment immediately. I went home, and shared my findings. I told my sweet husband that I thought he had MS. I shared with him all the signs and symptoms. We discussed it and he agreed. It sounded very much like MS.

The feeling that day? I felt good in finding out there was a name to this Monster. Over the next few days, the realization sunk in. I knew that MS wouldn't kill my sweet husband, but I began to think back over what I'd read. Progression. No cure. Disabling. I began to put pressure on him to go to the Dr. He refused. Why should he? He knew what it was now. What more could a Dr. tell him? Was there a cure? No. Then why bother?

Over the next few months, we had many "discussions" about this. I nagged and cried, I worried and fretted. Finally, in March of 2000, we got the official diagnosis.

This month marks 11 years since that day we sat in the doctors office and were told that MS was probable. No one wants to say it right away. Although, by the time we saw the doctor, my sweet husband was already very progressed. He had lost muscle mass in his back, arms, legs, shoulders. A trained eye could see what we had overlooked for so long.

This morning we were talking about his diagnosis. I asked him if he could remember what he was feeling that day. He said remembered feeling just fine. He thought to himself, hey it's MS. We know what it is. If this is as bad as it gets, I can handle it.

I suppose, since the doctor hadn't made a firm diagnosis, he didn't go into what lay ahead for my hubby. He referred us to a neurologist and wanted hubby to get an MRI and a spinal tap for a firm diagnosis. But we all knew the truth.

What I felt, I really didn't discuss much. It takes time for all of us to process the information. I assumed that my hubby knew what a diagnosis of MS meant. I did. I had read it all. I knew. And, maybe that is why I panicked. I thought he knew. He was handling it well. But he didn't know the entire truth.

This is National Multiple Sclerosis Awareness Week.

Here is what I put on Facebook this week:

A lot of people do not understand MS and what it does. Please visit the National MS Society website and read about MS. There are different types, and Forrest now has a progressive form of MS.

I am putting this out there for information purposes. It is important to me that you, my friends, know and understand MS so that you can donate to help find a cure.

Any cure that is found now will not help my husband. He has permanent damage to his central nervous system. My hope and prayer is that no one else would ever have to experience what he and we have experienced.

Forrest was diagnosed 11 years ago, and we've had to watch as MS has taken his abilities to do everything. He is now in bed all but about 3-4 hours a week. MS is a progressive, debilitating disease.

Imagine your strong, capable husband declining day by day. Imagine him going from caring for you and your family, to you and your children caring for him, taking care of his most basic needs. It affects every area of his life.

Imagine not being able to leave your house because you are too weak to sit in a wheel chair. Imagine not being able to get yourself a glass of water, not being able to walk across the room and hug your child or wife.

Imagine being so weak that you cannot lift a glass of water or move your legs in bed. Imagine being so weak and uncoordinated that you cannot dress yourself, comb your hair or brush your teeth. Imagine your thinking being so foggy that you cannot think of the word you want to say. Imagine not being able to breathe if you laugh. Imagine crying or laughing uncontrollably and without reason.

There are many other issues and body systems that are damaged and do not function normally for Forrest. MS will not kill those affected by it. It just lingers and robs.

Please donate to find a cure. Please help stop MS. And, for Forrest, please pray. Unless God chooses to heal Forrest, he will continue to decline. We believe in the power of prayer, and we know that God can heal him if He so chooses.

Forrest is such a blessing to us. His attitude and spirit are so sweet. He encourages everyone he speaks with and we are grateful that God has allowed our lives to be touched by his.

Emily Dickinson

2011-03-20T11:12:00.001-05:00

If I can stop one heart from breaking,
I shall not live in vain;
If I can ease one life the aching,
Or cool one pain,
Or help one fainting robin
Unto his nest again,
I shall not live in vain.

Keeping it in balance

2011-03-18T15:44:00.002-05:00

One thing about the care giving life that is SO difficult is finding balance. I have tendency to fixate on things.

I fixate on:

care giving activities
computer time
sewing
cooking
organizing
visiting with friends
watching t.v. or movies

It's like I get tunnel vision and take things out of balance. If I decide I want to watch a movie, sometimes I'll go over board and think: three movies would be more fun.

Or I'll decide to clean out a closet and then start going crazy and organize three closets, dresser drawers, the pantry and paperwork.

Or instead of just inviting one couple over for dessert, I'll call several friends over and spread them out to visit over the next week.

The trouble with this is that I end up exhausted.

So, I'm learning that I don't have to go overboard with things. I can take one thing at a time. I can slowly go through the house/closets/drawers and clean a bit. I can watch a movie and turn it off and move on. I can enjoy a visit with a friend and wait a week to invite another friend over next week. I don't have to do everything all at once.

I need to strive for balance.....

There is no need to loose perspective and go all crazy, now is there??

Change doesn't happen overnight, but I'm seeing some improvement. I'm writing out my priorities and seeing what it is that is MOST important.

1. Taking care of my Dear Hubby.

2. Caring for my Dear Younger Daughter, schooling her and making sure her needs are met.

3. Keeping up with basic household needs: laundry, cooking, cleaning, shopping.

4. Spending time with friends and loved ones. Getting built back up emotionally and mentally so I can go on.

5. Plan for the long term, but focus on the short term.

6. Take time to relax and enjoy our time together. Who knows how long Dear Hubby and I have together. I don't want to have regrets.

Subscribe and Save

2011-03-11T11:53:00.002-06:00

Just found this today: Amazon Subscribe and Save.

Check it out. For those of us who can't get out as much as we'd like, wouldn't it be wonderful to have things delivered to your door? No more lugging big packages and heavy items from store shelves to checkout to the vehicle and into the house.

Today, I placed orders for toilet paper, paper towels, laundry soap and softener to be delivered regularly.

You pick your items, in the sizes you want (2 pack, 4 pack, 6 pack, etc.), pick the frequency of delivery (1 month, 2 month, 3 month, 6 month) and place your order.

Double check sizes and prices to make sure you really are getting a good deal.

I'm very excited and will continue checking for items as needed to add to my automatic shipping schedule.

While computers, cell phones and blue ray players mess up and drive me crazy at times, I really am grateful for technology!

Too many sickies.....

2011-03-07T16:05:00.002-06:00

Our younger son, who still lives at home has been running a fever since Friday. He went to the "Ready Clinic" on Saturday, to get a doctor's excuse to miss work. He has to be back at work on Tuesday, but alas, he is still sick. So today, he went to see his PCP. It's official, he has the flu. He begins Tamiflu as soon as we can find a pharmacy that carries it. It's in high demand here.....

And this morning, our youngest daughter woke up running a temp (101.5). And, now she has an appointment tomorrow afternoon.

Our oldest daughter has decided to move to another location, as prevention. She has a tendency for bronchitis and pneumonia and doesn't want to get sick. On the plus side, she will be making store runs for us, keeping the pantry stocked so that I can cook some yummy stuff for the family.

The "kids" are in isolation, but since I'm caring for them both, chances are pretty good that I will get this. And, if I do, I'm hoping my son will be able to care for me. Maybe I won't get it. That sometimes happens. Right?

And, we're all praying that Dear Husband doesn't get it. He is in a weakened condition. It could very easily go south for him.

And, you're probably thinking, Why doesn't he take the flu vaccine?

He doesn't because there is a chance he could get the flu from the shot, and he can't run a temp or things get really bad. Flu vaccines aren't all that accurate either. They only prevent what the CDC thinks may run through the population that year. It can't prevent every type of flu. We take our chances.

So if you think about us this week, please pray.

Progressions

2011-03-06T08:11:00.003-06:00

We've seen them over the past few weeks. My sweet husband is slowly loosing use of his hands. He's been needing help with feeding toward the end of the meal for about a year or so. But lately, he can't hold a utensil in his hands. He's even having trouble feeding himself "finger foods".

It's been a challenge as we find our rhythm. I don't want to rush him and poke food in his mouth faster than he is comfortable with or can handle, but on the other hand, I don't want him sitting and waiting on me for another bite.

And, then there are the spills. I get food on his mouth, his face, his shirt. It's a mess.

But, as with anything, practice makes perfect.

So another progression, more adjustments, the new normal.....and we find ourselves doing what it takes to live.

He gives up more freedom, I take on more responsibility, give and take, test and trial.

I sure love him.....and I would do anything for him.

Misplaced guilt....

2011-02-25T09:21:00.003-06:00

It's something all caregivers deal with. We're a guilty lot.

"I'm not doing enough."

"I'm not doing it right."

"I should have...."

This week, I took my youngest daughter to see my sister and niece at their home. Sweet niece's birthday was earlier this month and I had a gift for her. It was an hour and a half drive both ways. And, I had a plan for care of my hubby while I was away.

Dear Younger Son had just worked a 24 hour shift and would be home that day, sleeping. Sometimes he sleeps for a LONG time, but usually, just about four hours and then he's up the rest of the day. We all discussed it. He would be responsible for his dad that day, so our youngest daughter could go with me. And, our oldest daughter was working 15 minutes away. Her job is very flexible and she can leave for a bit, if she needs to.

I prepared everything, the house was clean, dear hubby was clean, things were done, I had made muffins for breakfast, dinner was planned, plenty of food in the pantry for lunch and snacks. I got hubby dressed that morning, face washed, all his morning routine done. Gave him his coffee, made him a glass of water, offered him food, set up his iPad, got him the remote to the t.v., sat his cell phone beside him, and kissed him goodbye.

We had agreed, if he needed anything he should call our son.....he was sleeping just down the hall, but didn't mind getting up if he was needed.

I left and called to check on my hubby about 3 hours into my visit. He was fine, resting a bit, we'd talk later.

My sister, daughter, niece and I had a good time. We went to eat lunch at Chick-fil-a, opened presents, visited, laughed and watched my niece play outside for a bit. Before I left, I sent my hubby a text to let him know I would be home in a bit.

I was gone for 7 1/2 hours.

When I walked in the door and went back to our bedroom, and there sat hubby, tired and looking lonely, but glad to see me. My son was still asleep. Hubby was out of water. I asked my husband if he had eaten anything. He looked exhausted.

Come to find out, our daughter ran home for a bit and hubby asked her to move his legs, get him some water and give him a muffin. All day he had laid in bed, no water except the original glass, nothing to eat, no help so he could move his legs, no one to talk to, etc.

Dear hubby, hugged me and told me he missed me while I was gone. He told me that he doesn't do well when I'm not here. He said he needed me and longed to hear my voice.

And, I felt guilty.

"I knew I shouldn't have left."

"Why did I pick this day?"

"Poor hubby, it's my fault he was hungry and thirsty."

"I should have been home, so he wouldn't be lonely."

I talked to myself and gave myself a lecture as I helped adjust him in bed. I berated myself, as I ran to the kitchen and made him a snack. I was frustrated with myself as I got him a glass of water. And, I told myself I wouldn't ever do this again.

I ran through the house, getting the things my hubby needed to be comfortable, I waited on him hand and foot, made him a delicious dinner, offered to get him this and that, rubbed his feet, etc. I was responding out of guilt.

Later that evening, as I was busy putting things away, straightening up after my mad dash home, it hit me. I was dealing with misplaced guilt.

I began to realize that I had made plans, I had provided, I had left him in good care. He had everything he needed for a few hours, and when he needed something, he had a cell phone. He could have called our son, and woken him up. He could have. Our son had agreed that he didn't mind waking up to help his dad. Our daughter was working 15 minutes away and has a very flexible schedule. He could have called her.

He is an adult. He is capable of making decisions. He needs full time supervision, in case of emergency, but he is a capable person without cognitive issues.

He thought through his choices and decided NOT to call our son for help. He made the choice. He had options and he chose.

I've struggled with misplaced guilt most of my life. I have always assumed that everything was my job. It's my responsibility to make sure that everyone is happy and taken care of. If I don't do it, it won't get done and people will not be happy and it will be my fault. Dear hubby knows this about me. He knows that I've been working through that and we've had countless discussions about it.

And, the next morning, we talked as I got him ready for the day. We were talking about how things went. And, I shared with him my misplaced guilt response.

We talked it out and he told me in no uncertain terms that he was well aware of the fact that he could call our son. He said he thought about it and realized he could wait. He was glad when our daughter came home and helped him out a bit, got him some more water and a muffin, but he said it was his choice that he didn't eat that morning before I left. I had offered. There were things he could have done differently and he admitted that next time, he would call our son. It was foolish not to.

I'm learning where my choices end and where others begin. I'm fortunate in that my hubby has the mental capability to make decisions. If he chooses something different than I would have chosen, I can't take responsibility for that. I can't feel guilty for something that is not my responsibility.

I wish Dear Hubby's day had gone differently. I wish he had made better choices, but he didn't. And, he realizes now what he should have done. Dear Son told him that evening, you should have called me and got me up. No big deal.

I'm still learning to work through misplaced guilt. How about you?

Forgetting

2011-02-17T12:24:00.002-06:00

Sometimes I forget things. I forget where I placed my cell phone. Or my van keys. Sometimes I loose important papers and go on a mad hunt for them. I've forgotten my friend's birthdays. I've forgotten to make phone calls.

I think the thing that brings me the most sadness is this: I've forgotten life before MS.

I've forgotten what my sweet husband was like: strong, vibrant, healthy, and a hard worker.

I've forgotten what I was like before MS.

I've forgotten how families operate, the activities you participate in, going to church, visiting family, etc.

I've forgotten what it's like to have a door opened for you. A glass of tea brought to you by your sweetie, or what it's like walking through Home Depot, hand in hand.

I've forgotten what it is to look ahead to the future with excitement and anticipation of wonderful things.

I've forgotten who I was before......

Still here

2011-02-12T10:36:00.004-06:00

It's been a while since I posted here, I know. And, I've asked myself why.

Perhaps I'm just too busy? No, not really. I have time to do what I need to do and then spare time to do some of the things I want.

Maybe I have nothing to say? No, that's not it either. With caregiving, there is always something to say.

I think that maybe it's that I feel that here during the midst of my caregiving experience, often I have to "work myself up" to post something upbeat and encouraging. Reading over my past posts, I know that they aren't always the most encouraging, but I'm thinking maybe it's better to focus on the good.

And, so maybe that's why I haven't posted in a while.

There are good things that have happened over the years, as I've walked this caregiving journey and I am grateful. I really am.

But this is rough road. It is a road filled with self doubt, fear, sadness, loss, misunderstandings, dread, hospital runs, stress, family issues, financial pressures, etc. It's all there.

And, I struggle with the balance between being honest and being encouraging. If I speak honestly everyday, I think I would find that there is a lot of pain on this journey and maybe that's just too much to face in written word, in black and white.

There are snatches and moments of joy, but they are soon replaced by loneliness, sadness and hurt. As caregivers, we try to make the best of life and enjoy what we are given. Making lemonade out of lemons. But some days we realize that we are short on sugar and our lemonade is too tart for our liking.

So maybe today, I will write another list of gratitudes. Maybe today, I'll concentrate on the good. Maybe today, I'll spend time thanking the Lord for what I do have, instead of thinking about what I lack.

And, maybe in the process of doing that He will change my heart. Maybe He will change my outlook. And, maybe I'll find myself with a tiny bit of joy to cling to.

2010-10-28T08:37:00.001-05:00

"So when the devil throws your sins in your face, and declares that you deserve death and hell, tell him this: I admit I deserve death and hell, what of it? For I know One who suffered and made satisfaction in my behalf. His name is Jesus Christ, Son of God, where He is, there I shall be also." ---- From the movie "Luther"

2010-08-23T14:08:00.002-05:00

"Gratitude unlocks the fullness of life.
It turns what we have into enough, and more.
It turns denial into acceptance, chaos to order,
confusion to clarity. It can turn a meal into a feast,
a house into a home, a stranger into a friend.
Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow.”

- Melody Beattie

Counting your blessings.....

2010-08-23T10:43:00.003-05:00

"Oh no. Please don't tell me this is going to be one of those happy blog posts about "counting your blessings". Seriously? Don't you understand my life???"

Believe me, I do understand your life. But you know what I have discovered about humankind? I have discovered that we all have different blessings.

Yes, we do. As caregivers, our blessings, when listed, would look completely different from what I'll call "normals". Those of us who are caring for our loved ones have many blessings that we overlook each day.

I've talked about finding contentment before, but just maybe contentment is also found along the road of counting our blessings.

So this week, I'm going to try to focus on counting my blessings, as difficult as that may be at times.

I am blessed.....

because I get to be at home with my husband and my last remaining minor child. We can enjoy one anothers company.

in that I have very reliable air conditioning in this oppressive heat wave. Our city has had temps in the 100's for several weeks now, and we've been under heat advisories. No one can handle temps this high, and certainly not my Dear Hubby with his MS. It would kill him, literally.

to have people in my life who care deeply for me. We have friends from our past visiting us, and friends who have made a deep connection with us. I know of 6 women that I could call right now and I know that they would pray with me and for me. I know these women would run an errand for me or just come here to sit with me and hold my hand. I am loved.

that my husband while almost completely bedridden, is able to communicate, visit and share with me. Many caregivers don't have that, and I know that I may not always have that either.

with medical equipment, which makes caring for my husband less physically demanding that it once was. A hospital type bed, a Hoyer lift, medical supplies and consults with nurses, aides and doctors when we hit a rough spot.

to be able to share my heart with others, to be heard.

to finally understand in a small way how my Father in heaven sees me. This is a recent development as we've begun to understand the grace of God. Understanding who I am in Christ has removed a lot of condemnation that I've felt the past ten years when I've failed at being a "good wife" or a "sacrificial caregiver". I am growing in grace and in the knowledge of my Lord and Savior Jesus Christ.

because I am mentally healthy. No longer do I struggle with depression or thoughts of suicide. My life is demanding and challenging, for sure, but my mind is strong and healthy. God has done a remarkable work in my life.

to have little moments of quiet in my life, where I can reflect and remember.

in having memories. I can remember the good times our family has had together. I can remember the painful and burdensome times and can recall the ways God has moved on our behalf. I can cry over the loss of children through miscarriage and rejoice in knowing I will see them again.

in having met some wonderful people through the internet.

Those of you who have contacted me through this blog have had a profound influence in my life. As you share your story with me, I remember all the things I have been through. I see myself in your story. And, through you, I am feeling a calling on my life. I anticipate that God is going to use me in a way I NEVER would have dreamed. My life may only affect one person, but I am willing to be used. I have nothing to give. All I can do is point to the One who has done a work and to share this: If God can change my heart, if He can heal my mind, if He can provide for me, He can do the same for you.

I am proof positive that God is still working miracles, large and small......

I am a blessed woman.

Finding your calling......

2010-08-21T10:38:00.002-05:00

I've been thinking about passion and calling lately. I think that possibly the Lord is showing me some things. It's exciting, at times, discouraging, painful, and yet brings with it a sense of peace. I have no idea what the future holds, but I am opening my heart and hands to what He wants to do with my life.

Right now, of course, my focus is on my husband and caring for him. Being the best wife I can be to him. And, we still have one minor child at home, so I'm still in the mothering role too. And, yes, my adult children still need a mother. And, I am a grandmother, who loves spending time with her precious grandson.

But this I know, I am beginning to see things that I know the Lord is placing on my heart. I am beginning to see areas that are lacking and I'm wanting to fill the gaps. I can't fill them all, but I can start small and do what I can.

My heart today is for the caregiver. For the person who is giving of themselves until it hurts. My heart breaks to think of how many are doing this alone, day after day, week after week, month after month. No relief in sight. What keeps them going?? Love. Compassion. Duty. Whatever the reason, they need our support.

If you are a caregiver, let me say how much I respect you. Let me be the mirror to your heart. Stand here and see the truth. You are amazing. No, you are not perfect. You get frustrated, you're tired and lonely....but you are doing a good thing. You are doing a hard thing. If your loved one cannot or does not voice their appreciation, let me be that voice you need to hear. I appreciate you. I respect you. I know what you are doing and how difficult it is. I know that you are laboring, hurting, and going through such hardship that some days it is hard to breathe.

I love this passage of scripture, and I think this is what a caregiver does each and every day...

Matthew 25:31-40

³¹When the Son of man shall come in his glory,

and all the holy angels with him,

then shall he sit upon the throne of his glory:

³²And before him shall be gathered all nations:

and he shall separate them one from another,

as a shepherd divideth his sheep from the goats:

³³And he shall set the sheep on his right hand,

but the goats on the left.

³⁴Then shall the King say unto them on his right hand,

Come, ye blessed of my Father,

inherit the kingdom prepared for you

from the foundation of the world:

³⁵For I was an hungred, and ye gave me meat:

I was thirsty, and ye gave me drink:

I was a stranger, and ye took me in:

³⁶Naked, and ye clothed me: I was sick,

and ye visited me:

I was in prison, and ye came unto me.

³⁷Then shall the righteous answer him, saying,

Lord, when saw we thee an hungred, and fed thee?

or thirsty, and gave thee drink?

³⁸When saw we thee a stranger,

and took thee in? or naked, and clothed thee?

³⁹Or when saw we thee sick, or in prison, and came unto thee?

⁴⁰And the King shall answer and say unto them,

Verily I say unto you, Inasmuch as ye

have done it unto one of the least of these my brethren,

ye have done it unto me.

Love in action.....

2010-08-08T10:46:00.003-05:00

I'm going to admit something here. I'm going to show you that I have a bad side. I try not to show just how "bad" I really am on my blog, but today I will.

I keep in touch with people from my past. I won't say much more about that, because I don't want to identify anyone and hurt feelings. Most of the people in my life, past and present are Christians, and most are women.

Now, as women do, they are sharing links with me. I get e-mails from them with links to articles and videos. I see on Facebook all sorts of messages written to Christian women. They talk about being a good wife. They share insight into how to live out your faith in your home.

And, here is where the admission comes in. I'll admit it, those links, those videos on how to "love your husband" and "respect" him frustrate me so terribly. I can feel my blood pressure rising. I know my veins are constricting and my heart rate increases. Isn't that horrid???

I'm trying to figure out why. Part of it is that I allow myself to read the articles and watch the videos. I usually don't get very far into it before I have to stop myself or I might have a coronary!

I'm thinking the thing that bothers me so much is this. It's shallow. It's ridiculous. It's ..... I can't even think of a word.

Why do we need to hear women who have children ages 10 and 7, women who have been married for 12 years, explaining what it means to "love your husband", to "be a help meet"? I remember what life was like 12 years into marriage. I was head over heels in love with my husband, life was fun, I enjoyed caring for my little kiddos, we traveled and we went on dates. It's easy to love your husband at that stage of life.

Here is where the rubber meets the road. Have you invested in your relationship? Have you prepared yourself for the future? Are you strong enough to stand through life WITHOUT your husband? Sure, we should learn to love and depend on our husbands, but more importantly, are you a COMPLETE ADULT? Can you make decisions and do you know what you believe? Are you training your children to be adults? Or are you training them to be perpetual children?

We never know what the future holds. 12 years into our marriage, I had no idea what was around the corner. I had no idea that just a few short years later, I would be called upon to do things I thought was still decades away for us. We entered the twilight years 20-30 years ahead of schedule.

Here is my advice to young married women. Enjoy your husband! Invest in your relationship with him. Listen to him, and give advice to him. Be a help to him. Not nagging certainly, but don't be afraid to say what you think and feel. He has a wife for a reason. If you have an idea, share it. Let him be who he is, let him go with the men and let him do man things. You take time for you, be a woman, try new things, have opinions, think deep thoughts.

And, start now----- raise your children to be adults. Give them room to grow and be who God created them to be. Encourage their interests until they find their passion. Invest in their passion and teach them what they need to know in order to serve GOD. Give them responsibility and teach them to learn from their failures. Let them fail, and love them through it.

Love really is action. It's doing when you just don't think you can another day. It's respecting his health care decisions because he has a right to choose. It's standing up for yourself and saying no to bad behavior. It's taking time to care for yourself, so that you can care for others. It's listening, sharing, being there when no one else is. It's lonely days and terrifying nights. It's facing the future knowing that it may be bleak, but Jesus is THERE, just as He is HERE. It's understanding that you may find yourself stretched to the very end of yourself. It's walking away when you need to and running back again to throw your entire self into another life. It's deep breaths when you want to cry or scream. It's clinging to Jesus when there is nothing left. It's doing the right thing no matter who it goes against. And, it's giving of yourself til it hurts in ways you never dreamed it could.

Taking advantage....

2010-08-07T09:15:00.002-05:00

Sounds terrible, but I'm finally doing it!! We once had a Personal Care Aide that we paid to come in a bathe my sweet husband for me. She was here long enough each time to do that one job. But then, something terrible happened. She had a heart attack. Mild, really, but none the less, a warning sign for her to take it easy. She called, feeling terrible about leaving us high and dry, but I assured her that it was ok.

Thus began the search for someone else. It's always cheaper to hire someone, agree on a price, hours, etc. but you can run the risk of getting someone who will take advantage of you and your loved one. I've heard so many horror stories of loved ones abused, items missing, medication running short because someone needed a fix.

So this time, I called a Home Health Care Service. They came out, did an evaluation, we worked on a care plan, and decided on days and times. We decided on having an aide out once a week. The agency has a four hour minimum, and the rate is $20 an hour. They do background checks, have references and every three months, they send someone out to evaluate and question us on how the aide is doing. I can call them anytime, and they can send someone out. It probably won't be the same aide, but at least we know we have that as an option in an emergency.

We went through two aides before we met Jennifer! Now, we explained to Jennifer that her first and most important task when she is here is to bathe and care for my husband. She is to take care of him and if there is any time leftover, she can do some "light housekeeping".

The amazing thing is this: she is a WHIZ!! She does my husband's personal care, and does it thoroughly! Then she runs errands around the house for him. Getting his hairbrush, finding things, moving things around and making coffee. And, the really amazing thing??? She has time leftover to do "light housekeeping"!!! Yay for ME!!

Jennifer changes Dear Hubby's sheets, washes, dries and folds them. She dusts our room, cleans the bathroom counters, sweeps, mops, vacuums, dusts our living room, puts away any unfolded laundry that might happen to be in the dryer (oops). She unloads the dishwasher, cleans the kitchen counters, dusts the window sills, etc. She is a hard worker and gets so much done in such a short time.

I take the opportunity when she is here to leave the house, run errands, go to the movies, do some FUN shopping, or grocery shopping and I've been known to take naps! What can be better than getting into bed and knowing you don't have to get up for FOUR HOURS??? Sometimes I sleep for a while and then read in bed. Sometimes I get an iced tea and get on the computer before my nap. And sometimes, (don't tell anyone) I sleep almost the entire time!! It's really wonderful.

Once we had company coming over at 5:30. Jennifer would be leaving at 5:00. So, do you want to know what I did? I was supposed to make the veggies for sandwiches, while the other ladies were bringing soups, deli meat, cheese and dessert. Jennifer came in, I took a nap and right before she left, I hopped in the shower and got ready for company. She had Dear Hubby ready, the house was sparkling. She had even cut up tomatoes and washed lettuce for the pot faith meal. I took a three hour nap, was able to get dressed for the get together without interruption. Dear Hubby was dressed, the house was clean and my portion of the meal was done. It was unbelievable!!

Oh yeah, I'm taking advantage of having Jennifer around. We pay for her help, but I think we're getting a pretty good deal. Not only does Dear Hubby get bathed and taken care of, but I get time out, and my house gets a good once over. Nice, very, very nice!

Staying connected....

2010-08-02T09:28:00.003-05:00

It's not an easy thing to do when you are a caregiver. Fortunately, the Lord has blessed my husband and me with some wonderful friends and family.

For years we went to a particular church and made lots of dear friends. There were always a few in particular that we were closer to than others. About 8 months ago, one of the couples we've known for 16 years contacted us and asked if they could organize a get together with some other couples at our home. They would bring the meal and dessert if I would provide iced tea. That started a monthly get together with 5 couples that we love dearly.

It has been such a blessing for us to see the people we once saw on a weekly basis back when we all went to church together. Our lives took different turns but through it all, our friendships remained close. (They have all left our former church too.)

The other thing I've started doing is asking friends over to come spend a few hours with us, drinking coffee and getting caught up. We are connecting, through Facebook, with friends from our past and it's been wonderful having people in our home again. Of course, it is a bit of work, and there is always the chance that I will have to call the get together off because my dear hubby is not feeling well, but it's been worth every little bit of work.

We left our church of 16 years about a year ago. We joined a new church, and even though my sweet husband and I are not able to attend, we have been so blessed to have our Pastor visit with us almost monthly, sometimes more often than that. We have been amazed that a Pastor with such a large congregation would take his time to visit with us. There is no way we are going to be able to contribute to the church in traditional ways. We cannot attend, Dear Husband is in bed for days on end and usually out of bed only for a few hours when he does get up. We cannot contribute by participating in activities sponsored by the church. We do not have much to give financially either. And yet, this minister meets with us, answers questions we have about our reading of the Bible and encourages us. He loves us and accepts us and constantly asks us if there is anything we need. Our answer has always been the same, we need fellowship and we are finally getting it.

I understand that these situations were not organized by me. I think I was afraid of being turned down, and honestly, there was a time when I thought I had nothing to offer. I felt so alone and, I'll admit, no longer of use to my friends. It seems to me that the Lord has done this work on our behalf and I am feeling more connected to the world around me. I think that I will always, as a caregiver, feel a bit out of sync with the world and all it's busyness, but at least I can feel connected to people who we love.

Finding people who will stick with you through the difficult days of caregiving is NOT an easy task. I can't go out with friends as much as I'd like. I can't participate in a lot activities because finding someone to sit with my husband is not an easy task. I cannot invest much of my time or energy into relationships, mainly because so much of my time and energy is committed to my husband.....the one who comes first in my life.

If you are feeling trapped by caregiving, reach out. Call up those friends, contact them and let them know that you'd love to see them again. It might just develop into a very special connection that both of you were needing.

Turn Around

2010-07-22T10:40:00.002-05:00

Yes, honesty IS the best policy!

Sharing your heart, with pure motives, without ill intentions, regardless of the pain inflicted is a good idea. My openness has brought about some changes. I'm not saying that I made the changes, but sharing my heart brought about some open dialogue and for that I am grateful.

Dear Hubby and I are experiencing a new found love and respect for one another. Openness, sharing, love and respect are good things in a marriage, in sickness and in health.

Can I offer one piece of advice?? If you and your ill spouse are having marriage issues because of the illness, please speak up. Please reach out for help. These are big things we are dealing with in this life as a caregiver. Let's not make it more difficult than it already is.

And, here is a big (((((HUG))))) for all of us on this road with our spouses. May we find the gifts amidst the pains, may we reach out for the life lines when we are sinking and may our love and respect grow in new and meaningful ways.

2010-07-18T09:44:00.000-05:00

"We are not necessarily doubting
that God will do the best for us;
we are wondering how painful
the best will turn out to be."

-----CS Lewis

Honesty? The best policy?

2010-07-17T09:37:00.002-05:00

Yes. It is. But there are consequences when you decide to be honest. Sometimes what you say hurts someone. Or they figure out the real you and they no longer like you. Honesty is painful, but sometimes it's the only way to get help and get beyond living a double life.

Chronic illness does things to a person, whether they are the one who is sick or the whether they are the caregiver. It changes us. It's painful, terrible, good, bad, difficult, trying, beneficial, harmful and frightening. It brings hope, fear, worry, joy, loss, sadness and peace.

We can learn so much from illness, and at the same time, we can be robbed of so much. We can grow during these times, but we can also loose so much. Things change in chronic illness and most of us don't like change. Oh, fun changes we like...things like vacations, new restaurants, etc. But most big changes in our lives, we fight against. Especially the bad changes, the terrible things, the hard stuff.

I've been doing some fighting. I've been holding on to things..... and finding them changing on me has done a number on me. I don't like for my nice life to change into a hard life. I don't like the things the illness has done to me and to my husband. And, while I'm fighting, I'm realizing that fighting changes nothing, except maybe makes me a harder person to be around.

I'm trying to let go of some things, but sometimes it's hard to know what to hang on to, what to fight for and what needs to be approached with an open hand. Open to let the change happen and learning to live the new life, the new things.

Love is always worth fighting for, but sometimes love changes. And, that's one I'm having a difficult time with.

This past week, hubby and I sat down with a Pastor who has been such a blessing to our family. I was open, I was honest. Something I said hurt my husband. And, I'm not exactly sure of what the Pastor now thinks of me. I'm sure he still loves me. He's a gracious and kind man. But the main thing is this: I was honest. And, because of that honesty, some things have been talked about in our home.

The only advice our Pastor could give either of us, my hubby and I is this: pray. We both have one specific prayer to pray. We are each asking our Father in heaven for a specific thing. I will share mine.

I am praying for the Lord to give me a supernatural ability, a grace, to accept this life and deal with the difficulties I face each and every day. It sounds simple, and while I have prayed this many times since we began this journey, I am now focusing my heart and attention on this. I NEED supernatural ability because I cannot do this another day in my own strength. Ten years in and I have lost my ability. My strength has failed. Sure, I've known that as Christians we are never to do anything in our own strength and all this time, I've felt as if I was using the strength of the Lord to get through the days. And, now as the strength is beginning to fail me, perhaps I'm seeing that I've been living in my own strength.

I am begging my Jesus to do this work in me. Will you agree with me in prayer that He will give me supernatural ability and grace? I want to walk to the end of my time here in the valley, with the Lord's hand upon me, giving me His strength.

Another milestone has been reached....

2010-05-18T12:46:00.002-05:00

Today Dear Younger Son and I went to the garage and brought in the Hoyer lift that has been in storage for about 2 years. When we first got our 6 weeks worth of training, bed baths, and a hospital bed 2 years ago, (paid for by Medicare, only because I asked for it) the medical supply company also sent out a Hoyer lift. Medicare paid for part of it, and we paid the rest. And, for two years it has set unused in the garage. Way more trouble than it was worth.

But, recently Dear Hubby has gotten weaker and weaker, and some days he cannot lock his knees when I pull him to a standing position. When that happens, there had better be a wheelchair or bed behind him.

Last week he and I discussed that as he got weaker and was unable to support his weight, we would have to make some changes. And, as things have turned out, those changes have come a bit faster than we thought they would.

So, this morning, we used the Hoyer lift to get him transferred from his bed to the wheelchair. A few bumps on the road, but over all, it went smoothly. I can operate the lift all by myself. Rather nice. And, he and I both felt secure that he wasn't going to fall.

And, now we are looking online for the conversion kit to make the lift electric. Using the Hoyer in manual mode (as paid for by Medicare) quickly makes you realize "this ain't gonna get it". Conversion kits run about $700. A small price to pay, perhaps. But ugh. Medicare isn't all it's cracked up to be, but of course, anything is better than nothing.

Now on to the next set back, adjustment, retraining, and finally another new normal. Ever increasing disability leads to learning new things, retraining your brain and adjusting to the new limitations.

Of such is life, when dealing with chronic progressive illnesses.

Finding the end of the rope.....

2010-05-13T10:42:00.002-05:00

So what do you do when you find the end of the rope?? You tie a knot and hang on, right?

That's what I'm trying to do. Just this week, I stood at my husband's bedside and said loudly, I NEED A BREAK! He kindly answered, Ok. And, I finished getting him, myself and my youngest child ready for the day. A friend was coming to sit with my husband, and I was about to head out the door for haircuts for daughter and I and then on to the dentist.

Dear Younger Daughter and I did enjoy getting our hair cut, but honestly sometimes getting a haircut can be just another thing on your list of "things to do" for the day. We stopped afterward and ate some Italian food, and had a nice little visit before the dental appointment. That was fun. And, Dear Younger Daughter did well get a little cavity filled, but like me, she is difficult to deaden and was in some discomfort. We returned home, I was tired. We visited with our caregiver for a while, I made coffee, and snacks, Dear Younger Son picked up take out for dinner, and we did little that evening other than watch a movie...... well, and our bedtime routine, which you get if you are a caregiver.

I haven't gotten that break yet, but the lunch out was a bit of a respite in between marking two things off my list. The next two weeks are more dental and orthodontic appointments for Dear Younger Daughter. And, I got a phone call this morning about my prescription sunglasses, evidently there is a problem, again. And, it looks like I may need to make a run to TSO, again. More appointments.

When do I get that break???? I'm not sure. Four hours on Wednesdays off, which are filled with appointments. And, Saturdays, four hours of Home Health Care, which are filled with grocery shopping, etc. Hmmm, that doesn't leave much time for respite.

Finding someone to be here for 24 hours, so I can have time off is NOT always easy, but I'm in the process of finding some way to get it done. I need a day at the beach. For some reason I know it is what will heal me, soothe my trouble spirit. Some music from the iPod, a book, wind blowing in my face....that's what I need. And, I'll get there, somehow, someday.

Just gotta hang on......

Answering a question.....

2010-05-01T09:08:00.003-05:00

Today, I received a comment from a reader and thought I would share my thoughts in a blog post.

Paula I wanted to ask you a question. Since my mother in law has passed and we are now full time caregivers for Pop, no one comes by to visit him. Before all of her sisters and family were always here. We have only had a handful of visitors since January. My sister in law comes every other weekend and she sits for us sometimes when the kids have a program. How do I go about telling them that he was a part of the family too. He needs his friends and family. We have our friends and I can see where it is bothering him. if you have any advise I would be grateful.

God Be with You and Bless You
LaLisha

LaLisha, thank you so much for reading and commenting on my blog. I am sorry for the loss of your mother in law and your children's grandmother......

I understand that your father in law has had few visitors since the loss of his wife. It seems that when someone passes away, many people do not know how to respond or what to say. Immediately following the death and during the time of the funeral people often call, send cards, visit and bring meals. But once the "crisis" has past, many visitors fall away and forget about the one left behind to grieve. It's a common occurrence.

While my husband is still here with us, we've noticed that fewer and fewer people come to visit. It's been a long while since we started down this road of caregiving and the emotion of the diagnosis is no longer fresh in people's minds.

Here are some things that may help you, and others who are struggling with watching your loved one grieve over the loss of friendship and fellowship.

1. Have a family meeting. Invite everyone in the family to come over and discuss the situation. Just by reading your comment, I see that not only is your father in law not receiving visits from family, but you have one sister in law who is coming in every other weekend to sit with dad. I know you appreciate that, and today it may seem like enough, but honestly if you are only getting a break twice a month, you may find it to be too little. Care giving is rewarding, but also very exhausting. I suggest that you let your family know that while you will care for your father in law day in and day out, that you need for them to come once a week and sit with dad for 4-6 hours so that you can run errands, and then 3-4 times a year, you need a week off and need someone to fill in for you. You are giving more than 100% everyday and you need to maintain your physical and mental health in the midst of this care giving. You have children and a marriage and your husband and children need you. You are valuable to many people. And, you matter.

2. Get out your father in law's address book and start making calls. Perhaps we think we shouldn't have to do this, if people genuinely cared. People do care, they just get busy or have difficulty putting action to their thoughts. I have found that inviting people over for coffee and dessert is a great way of keeping our loved ones in touch with their friends.

3. If you attend a church, let your Pastor know that your loved one would appreciate a visit. Or contact Sunday School teachers, and leaders of the Senior Group at the church. Perhaps there are people who would be willing to visit your father in law. We joined a new church in the past 6 months and we have discussed with our Elders and Pastor the need for fellowship for shut ins and home bound members. Perhaps your call will start a new ministry at your church. This is often how it's done. A members sees a need and has a passion for an area of ministry, and starts the fire going.

4. Contact your county's Dept. on Aging and Disability. Many times there are programs for the elderly that we are completely unaware of.

While the best thing would be for family and friends to see the need themselves, often that is not the case. "Out of sight, out of mind" is often the rule of the day. Once our loved one is unable to participate in the activities they once did, people often forget about them. Or they get too busy and assume that someone is visiting them. Unfortunately, that is not always the case. Many elderly and disabled people are left alone, with their need of companionship dependent on the the people who care for them day in and day out. And, the caregivers are left to meet each and every need alone. This contributes to caregiver burnout and often leads to our loved ones not receiving the care they deserve.

Thank you for your concern for your father in law. I understand how exhausting it can be to care for someone full time. We are so careful to make sure they are taking the meds, bathing, dressing, feeding, etc. that it's easy to overlook our loved one's need for fellowship.

Reach out and let his friends know that he needs them and would enjoy visiting with him.

Here is a hug to all the caregivers out there, striving each day to ensure that our loved ones are getting the best care possible.

2010-03-03T07:15:00.002-06:00

Just wanted to let everyone know that we are fine and doing well. Things have been busy around here the past few weeks.

We've had some things done around the house and Dear Younger Son and I have been doing some cleaning of the garage! As I type this out, I am waiting for the sounds of the heavy trash truck running through the neighborhood. I'm praying that they bring an EMPTY garbage truck with them. We've got lots of recycling sitting at the curb as well as some honest to goodness junk. I'm feeling the bounce of a woman who lost a TON of junk out of her garage this morning!

This weekend is the baby shower for my Dear Older Son and Dear Daughter in Law. Little Grandson is due in about 6 weeks!! The two Grandmother's are hosting the shower and we're both very excited for our Dear Children as they learn what it is to love their very own child. There is nothing like it, is there?

Dear Hubby is excited to meet his grandson too, and has enjoyed watching the little mommy's tummy grow!!! He has been spending lots of time in bed, as he grows weaker physically. But it seems that the Lord keeps encouraging our hearts and giving us a reason to smile and a hope to hang our hat on. The Lord has blessed us with visits from our Pastor as well as some very dear and close friends. Having someone to love you is such a blessing.

And, we are excited for Dear Younger Son, who began work this week in his chosen field. He is a certified EMT. He picked up his uniforms yesterday, and today, he begins his first few ride outs. He will be riding an ambulance with a supervisor for two or three shifts and then after that, he'll be riding with his partner. Very exciting times for him!!

Praying all is well with my caregiving friends. Many blessings for a great week!!!

Happy Valentine's Day.......

2010-02-13T23:29:00.000-06:00

True love is neither physical or romantic. It is the acceptance of all that is, has been, will be, and will not be. ----Anonymous

Respite Trip

2010-02-07T20:05:00.003-06:00

I'm leaving in just a few short days for respite trip. A girl friend and I are heading out together and we're going to spend 4 days doing nothing but fun stuff. We're going to watch movies, eat popcorn, shop, giggle, share chocolate, get manicures and pedicures, dine out, stay up late and sleep in.

It's been a year since I've taken time away. Last time I went to my dad's 80th birthday. I should have done this sooner. I should have made it a priority, but life has a tendency to get in the way.

Please pray for my family while I am away. I've had a horrible cold and then a stomach bug. Now, Dear Older Daughter has the bug. Pray that Dear Hubby will stay well, and Dear Younger Son, who is taking care of my hubby while I am gone will stay healthy too.

Taking a Day at a Time.....

2010-01-31T16:40:00.003-06:00

Do you have long term plans?? Do you think about where you will be in five years, ten years, retirement? Do you have a notebook full of things you'd like to do or be? Things you would like to learn, get better at, or try?

Well, I'll be honest. I don't have long term plans. I mean, I plan for the future a bit....savings, anticipating future needs and such, but that's about it.

Caring for someone who is chronically ill kind of puts a damper on long term plans. I recently made reservations for a trip with a girlfriend. I found a B&B with a two bedroom suite that I thought would be a great place for a couple of friends to spend some fun time together. We talked about schedules and we discussed dates and we settled on a time that works for both of us.

But, I will admit, I was a bit nervous about making the reservation. I had to pay for 1/2 of the amount up front to reserve. And, if I cancel, I will loose that deposit unless the suite is rented after my cancellation. Frightening.......

And, why you ask?? Well, if you are a caregiver you already know. We just have no idea of what the future holds with our loved one. Dear Hubby is doing well. I have care set up for when I am gone....but I'm just a bit reluctant to invest our limited finances knowing that something could happen and I would be out that money. Yikes.

Making long term plans are difficult. I can't even imagine where I will be in five years. Will I still be in this house, this area?? Will my children still be at home? Where will we be in this illness and in caregiving? I can't even make myself phrase the questions I have in my heart.

I suppose that is why I must focus on today and maybe just the short term. None of us know what the future holds, where we will be. It's fine to make some plans, but we need, I NEED, to learn to hold all things loosely. And, to remember that while my future is uncertain, all that is certain is Jesus.

And, Lord willing, He will allow me to go on the respite trip I have planned in a week or so. I'm looking forward to it........

Dealing with Cognitive Issues

2010-01-24T12:29:00.002-06:00

Many caregivers are taking care of loved ones who have cognitive issues. From what I have read, this can be one of the most difficult and challenging things to deal with. You must be on constant watch over your loved one because in just a few short moments you could find them in a very dangerous situation.

Maybe your spouse isn't there yet....but you are starting to see small changes in him/her that concern you. Things like misuse of words, slowed responses, forgetting things that were once very easily recalled. Asking the same question two or three times. Or maybe just misunderstandings taking place more and more frequently. Maybe you're seeing some personality changes, or just some quirks that concern you.

These things can be difficult to handle. Especially if you are alone with your spouse most of the time. My Dear Hubby has some mild cognitive issues. Nothing serious, really. But at times they can be frustrating for him and for me.

It seems that the times that I am alone with him more and more without other adult communication is when it becomes more and more difficult to deal with. It seems that after a while of cognitive issues and misunderstandings, you begin to doubt YOUR mind. You start to wonder, Did he just ask me that? or is my mind playing tricks on me? Or you start questioning your ability to carry on a conversation, to explain things in a way that your spouse can understand.

Fortunately, when Dear Hubby and I have times of difficult communication, I can often call my adult children into the room to help us work through it. Sometimes, it helps you to have someone else to say, "he's just not getting it."

I think, perhaps, the reason this seems to help me is this: most days my Dear Hubby is completely coherent. He can talk, carry on conversations, maybe misuse a word here or there, but he is completely understandable, and he understands me. But there are days, when perhaps he is more fatigued than usual. Or maybe his brain is just not working as well, and I am thinking I am dealing with a completely coherent adult.....and I'm really not.

It's a difficult transition....some things he can handle just fine and some things he can't. If he is under pressure or stress, he will have a more difficult time with cognition. If he is tired, you can be assured there will be communication issues. If we can discuss things and then if I can walk away and give him time to think, we can usually come to an agreement. It's not always easy to do though. Sometimes you want to resolve an issue NOW.

But, in the end, as long as he is able to make informed decisions, he needs to do that. Sure, I can rob him of his adulthood by making each and every decision for him without asking his opinion, but that's not what either of us want.

I want to retain my marriage in spite of the caregiving.... And, in spite of his disability, he wants to retain his dignity. He wants to feel that he is still part of this marriage. It's a fine line we walk. And, it can be very frustrating. I think dealing with a spouse is so much more difficult that dealing with a parent, an ill child or even an extended family member. My husband and I are in a marriage together. We have a deeper connection than any other relationship experiences. And, sometimes these changes rob us of some of that. We must protect it as much as we are able.

If your spouse is experiencing more and more cognitive issues, perhaps it's time to have him/her evaluated by a physician. There may be medications that will help.

2010-01-23T00:30:00.001-06:00

When I am weak, and distressed, and alone, and none to receive my tale of sorrow, none to express a word of fellow-feeling or care for me, in the living oracles of the gospel I see divine wisdom and lovingkindness looking at me tenderly, compassionately, through the openings of my prison, and I feel that He who dresses the lily of the field, and numbers the sparrows, is near me, numbering the hairs of my head, listening to my cries, in all the treasures of His grace and power. He is the same gracious Redeemer and Preserver to every one that believes in His name.

B.A. Ramsbottom

That's my KING!!!!!!

2010-01-22T15:21:00.004-06:00

Taking no thought.....

2010-01-22T10:18:00.003-06:00

Take therefore no thought for the morrow:
for the morrow shall take thought for the things of itself.
Sufficient unto the day is the evil thereof.
Matthew 6:34

Matthew 6:34 reminds us that we are not to be anxious and troubled with cares about tomorrow. Tomorrow will be what it will be...we have no promise that we will even be here to see and experience the evils of the next day. And, there is plenty of evil for the day tomorrow.

To be anxious is to be full of mental stress or uneasiness because of fear of danger or misfortune. Oh, I have been there. And, honestly, it usually hits me fast and furiously. Like receiving a large bill in the mail that you were not expecting. Having a vehicle break down and having no money to repair it. Or maybe having the one we care for take a sudden downward spiral. It's terrifying.

Sometimes though, the mental stress and uneasiness comes when we are feeling overwhelmed by the daily responsibilities we face. Finances, isolation, loss, the physical work involved in caregiving, the inability to discuss things with your loved one because they just aren't understanding, the unknown future, the endless bad endings that we can imagine and the fear of being alone.

It wears on a caregiver. Knowing that you are responsible for it all. Finances, household chores, emergency decisions, short term decisions, long term decisions, taking care of the children, repairs, medical appointments, and knowing when you need to contact the Dr. and when it's time to make the trip to the ER. Family responsibilities, work responsibilities, lots of responsibilities.

How do we get through the days without feeling anxious, without being troubled, and distressed?? It's certainly not easy and it's something that most of us in this role battle on a daily basis.

I think preparation is necessary to deal with all the things that we know may be a future stress or problem that we will be called on to handle. In other words, instead of stressing and worrying about tomorrow let's make some plans to deal with the possibilities.

If you know that your spouse's health is fragile and there is the very real possibility that you will have to make an emergency trip to the ER in the near future, prepare for that eventuality.

Have a travel case packed with things you will need, in the short term, to be comfortable in the ER. Coins for vending machines, a book, maybe even an extra toothbrush and travel toothpaste.
Have a printed list of medications and dosages for your loved one tucked inside your bag. And know where your care recipients insurance card and ID are at all times.
Have another list of all his/her doctors and their phone numbers, etc.
Have the telephone numbers of two of your closest friends ready to call for support and prayer.
Have a plan for your children and who will fill in for you in getting them to school, picking them up, taking them to private lessons, etc.
Have a plan for your pets.
Make sure that you keep things done. Things like laundry, keeping the fridge cleaned out, dishes washed, house straightened etc. You never know how long you'll be at the hospital. And, you never know if this will be the time that the entire family will be called in.

If you are concerned about car repairs and issues, start a savings account just for that purpose. Have your car checked out and keep it maintained.

If you are concerned and worried about your future: what will happen if scenarios, make a list of possibilities and write some of your thoughts and ideas of what you can do.

Logically think these things through, write your ideas in a notebook, make plans, talk with people you trust and get advice. Be prepared. Pack your bag, open your savings account, get your documents in order, write out your plans.

And, after all of that is done, close your notebook. Place your hands on top of it and pray. Give your plans to the Lord Jesus Christ. Don't have confidence in your plans but transfer that confidence over to your Father in Heaven.

Say in an audible voice something along these lines, "Lord Jesus, I have made my plans and preparations. I have been a good steward of the things you have given me. I have sought advice from people I trust, I have packed our bags, I have contacted people and have things organized and planned. But, I know that what honors You is not my thoughtful plans, my organization, my abilities and performance. I know that what honors You and brings a smile to Your face is faith in YOU. So Lord Jesus, Creator of all things, Savior of my soul, my Strong Tower, my Shield and defense, I place everything in Your hands. I trust You for my future. I know that nothing happens that You do not allow, and I trust You to work all things together for my good. I give You my plans and I trust in You."

We should make plans, we should be prepared, but ultimately, if we want to overcome our distress and panic, if we want to overcome our anxieties and fears, we must turn every aspect of our lives into His care. We must trust Him...for everything.

Finding Friendship......

2010-01-20T09:05:00.002-06:00

Proverbs 18:24 says, A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother.

As a caregiver, we each deal with some measure of isolation. We feel alone, separated from others, and we often feel forgotten. It happens.

I recently read on a website for caregivers, that perhaps the isolation that we feel is really not so much that others are pulling away from us, but that we are pulling away from them. I'm not exactly sure about that, but maybe there is some truth in that.

I know that as my husband was able to do less and less, there were fewer opportunities for us to participate in activities. Some things were just physically impossible for him. And, then we began to notice that certain things really bothered him. Loud background noise, large groups of people, heavy odors, and more than one thing happening at once. (Like eating in a restaurant.... trying to eat, having conversations, music playing in the background and lots of noise.) He had sensory overload.

And, then Dear Hubby would tire out very quickly. So we didn't go to something that would cost us more than a couple of hours in time commitment. And, then, if it was too far from the house, you had to factor in driving time. Sitting up in the seat of the van was difficult and would tire him out.

For a period of time, Dear Hubby also didn't want to have people into our home. It was almost as if he had retreated there for quiet, peace and safety and he didn't want anyone invading our private space.

I began to decline invitations to do things too, because I would think about how it was once a family affair and I felt very strange doing things without my husband. I felt like a third wheel. I also had some bit of guilt in going places and enjoying things when Dear Hubby couldn't. And, in some weird way, it felt wrong. (It definitely wasn't, that was just my thinking at that time.)

Part of the isolation was because I felt as though I had nothing to talk about. People really didn't want to hear the details of how my husband was doing. They would ask, politely, and I got the feeling that most wanted a 2-3 minute explanation and that was it. Or if they wanted more information, it was mentally and emotionally exhausting to go through it all and explain the details of a disease most people knew nothing, or very little about. Or if the subject got off into other areas, I would begin to feel uncomfortable. Things like complaining about their husband who hadn't taken out the trash. Discussing their next family vacation. Or even discussing a trip to the park with their kids, which we hadn't done in years. It was too difficult to listen to and I had nothing to contribute to the conversation.

And, I was an emotional basket case. I never knew what would set me off, and I might end up crying at weird times, in public places, making myself and my friends uncomfortable.

I wasn't really at the point where I was ready to move past the idea that this was my life. Maybe I was clinging too tightly to my past life, the things that were and would never be again.

But, over the past year or so, I've seen the change happen. As I've said before, I began to realize that today IS my life, and I need to learn to enjoy and participate in the life I have. And, I need to stop focusing on what I don't have.

So, I've begun reaching out. I've called friends, sent messages, and let people know that while I can't leave home as often as I once did, that they can come see me. I've had to work at it, but I'm learning to accept these limitations and do what I can with them.

I've learned that I cannot have the house prepared for company, have Dear Hubby and I both dressed and in our right minds, make a meal and dessert, etc. It's just too much. So, I've learned to speak up and tell my friends that I can't cook, but I can sure make a great cup of coffee or tea. I can make an easy dessert the day ahead. And, sometimes, friends will volunteer to bring us a meal to share, or to pick up some take out.

Because of the isolation I've felt, real or imagined, and because most people don't know what we want or need, I've had to start the ball rolling. I've had to let it be known that we need our friends, we need time of fellowship, while Dear Hubby and I can both enjoy it. There may come a day when he can't handle having people in our home....and then I'll have to make a new plan.

Perhaps then I will make lunch dates with girlfriends, or like I did recently, I can go to a friend's house and drink coffee with her. Or maybe I can plan a 3 or 4 day respite trip and take a girlfriend with me. Or catch a movie with one of my kids.

If we don't make plans, things won't happen. We have to reach out and show others that we need them. And, most people are kind and will reach out to us in return.

I'm beginning to see people again and I'm realizing just how much of life I missed out on. No, life is not perfect, things aren't the way I wanted them to be, but life is pretty good.

And, I have some really amazing friends.

Finding Patience....

2010-01-18T08:01:00.002-06:00

Patience. Just reading the word makes chills run up and down my spine. Why is that? Because, if you read your Bible, you know what brings patience into a Christian's life. Yes, that's right....trials.

James 1:3

Knowing this, that the trying
of your faith worketh patience.

Trials are not really what I'm looking for, but patience, yes. There are so many opportunities to work on patience, because there are so many trials to endure. There are so many opportunities each day to see if what I believe about God, about my relationship with Christ, is true.

I'm not talking about the belief that God wants us to have a happy, carefree existence. I'm talking about the belief that God, my Father, wants what is best for me. And, though I don't always like it, that may mean that some very difficult things are ahead of me.

I believe that patience and faith go hand in hand. No, what we experience is NOT easy. What we do day in and day out is hard. And, the fact that there are few of us who really understand, makes it more difficult. Not knowing when it will end, and wanting it to, only to realize that for that to happen, my loved one must pass from this life into eternity is heart breaking.

Patience reveals to ourselves and to others what we truly believe about our Father in Heaven. He is faithful, He is trustworthy, He is all seeing, all knowing, and everywhere all at the same time, He is love, He is just, He is our very life.

That is not to say it is wrong to make our life as good as we can. Do what you can to make this caregiving life easier. If you can change things for the better, do it. But, when you can't. When you have done all you can. Find patience.

Know that God is working in our lives. He is allowing these very real, very, very difficult things for our good. (Romans 8:28) He is developing our character, our faith in Him, He is maturing us....and just maybe He is using us as an imperfect witness to His perfection.

Finding Contentment.....

2010-01-13T07:58:00.002-06:00

I am discovering little bits of contentment in my caregiving experience. Talking with a friend recently, I realized that it has been a very L-O-N-G process for me. I've been in this caregiving role for ten years now, and just recently have I found that I am dealing a bit better with the limitations in my life.

Maybe I've finally accepted the fact that this IS our life. I am not going to wake up and find that it's a bad dream. My Dear Hubby will never experience physical healing (aside from miraculous intervention by the Lord). I've accepted the fact that things aren't getting easier, for him or for me. This disease WILL progress and the needs will become greater and the burden will become heavier. Bad or good, it is true. And, for some strange reason, today, this does not depress me.

Elisabeth Elliot says, "In acceptance lies peace." Perhaps, after ten years, I have begun to accept what has happened to my husband, to me, to our family, to our future, to our marriage, to our ministry, etc.

We all deal with things differently, and evidently, we pass through the stages of grief at different rates. Remember reading them??

Denial (this isn't happening to me!)
Anger (why is this happening to me?)
Bargaining (I promise I'll be a better person if...)
Depression (I don't care anymore)
Acceptance (I'm ready for whatever comes)

Thinking back over the past ten years, I'm pretty sure that I spent WAY too much time in the anger stage. I knew there was no bargaining with MS or with God, so yeah, bargaining was going to get me no where. But, I found anger to be the one I wallowed in...... well, anger and depression.

I've spent a lot of time wondering why. Not so much why did it happen, but more along the lines of the why did the details of it happen. Why at such a young age? Why when our children were still young? Why do I feel like an alien, and so all alone? Why is there no one who understands what we're going through? Why do people forsake you? Why can't we get help? Lots and lots of whys.....and all these whys were because of an underlying anger I had toward MS. I hated it, and I was mad.

I was mad at the symptoms. I was mad at the way MS invaded every area of our life. I was mad at people who got to live the life I was supposed to be living. I was mad at the way our children were robbed of their dad's hands on involvement. I was mad at the clueless, hurtful words said to us. I was angry at those who just didn't get it. I was just plain angry. And most of the time I called it hurt. I was just hurt by friends, by my church, by family members, by total strangers.

Yeah, it was bad.

And, maybe now I am learning to accept the limitations, the isolation, and the restrictions. And, I'm learning that it's not all bad. Maybe that's where "finding the good" has helped. Finding little joys on the journey. Like rounding a corner and finding a scenic overview. Like driving through a thunderstorm and being rewarded with a rainbow. Finding a song amid the noise. Seeing a flower bloom between the cracks of cement. Unexpected little pleasures.

A cup of coffee with a friend, the songs of birds, laughter shared, seeing compassion grow in your heart for others who are hurting, blue skies, a baby's smile, a young child's antics, a phone call from a dear friend, an encouraging word from a friend who is going through something much more difficult than you are, a kind deed from a stranger, and hand reaching out to hold yours. I'm beginning to see that life, overall, is still good, even though it is difficult.

I've had to adapt my lifestyle to fit the needs of my husband and while it can feel smothering, or limited, or perhaps restrictive, I have found a little slice of contentment. I have found that I like keeping my hands and my mind busy, that listening to music soothes my soul, making quilts and being creative calms me, opening my home and loving people keeps me connected and whispers of praise and thanksgiving to my Creator keep my heart focused on Him.

I've found that anger makes me ungrateful. That it shuts my heart and spirit to learning. That it causes me to be unpleasant and chases the people I love away. I leads to unkind words and thoughtless deeds. It tears down relationships and kills love. It robs and steals and destroys.

So, I am seeking acceptance. I'm taking it in and saying, Teach me Lord.

2010-01-08T10:54:00.000-06:00

Begin by thanking Him for some little thing, and then go on, day by day, adding to your subjects of praise; thus you will find their numbers grow wonderfully; and, in the same proportion, will your subjects of murmuring and complaining diminish, until you see in everything some cause for thanksgiving. ----Priscilla Maurice

Finding the good.....

2010-01-07T11:04:00.002-06:00

it's not always easy, is it? It's not like we need to just get over the fact that our loved one is sick and be happy. When you are a caregiver, almost every moment is consumed with illness, pain, suffering and difficulty. And, it can be an emotional drain.

My last post, I discussed my resolutions, and honestly they are my attempt at finding the good and learning to enjoy the little things. I doubt I will ever be that light hearted, silly, happy go lucky girl I once was, but I want to have a grateful heart. I want to enjoy the days I'm given, even if they are difficult. And, that may just mean that I will have to search harder and harder as Dear Hubby's disease progresses.

He is spending more and more time in bed, he is feeling bad most days and is getting weaker, but one thing I am grateful for is that I do get to spend time with him. I am able to be home with him, talk with him, laugh with him, have a cup of coffee with him, kiss him, hug him and just be with him.....that is truly a blessing.

We lost a dear friend at Christmas time, and I have thought about how empty it must be without him in the home. Yes, they are grateful his pain is over and would never call him back, if they could.....but I know they miss him terribly.

I am given this day to be with my sweet heart and I am grateful.

New Year's Resolutions

2010-01-03T23:58:00.002-06:00

I never make New Year's Resolutions, but there has been much blogging out there about them, and so I've been giving resolutions a thought or two. I've decided that maybe they aren't all bad. So here are some of my resolutions.

This year, I resolve to.....

...spend time doing things I enjoy.

...hug an old person.

...hold a baby.

...forgive someone who has wronged me.

...laugh til I cry with a friend.

...make room in my life for coffee dates with people I miss.

...appreciate beauty when I find it.

...brush my daughter's hair, realizing that in the very near future, she won't want me to do that.

...look into the bright blue sky, and remember that God made this day and I WILL rejoice in it.

...dry the tears of someone I love.

...share a memory with my husband.

...call someone, just to tell them I love them.

...write a note of encouragement.

...take a trip with my girlfriend.

...share a smile with a stranger.

...pray for someone who is hurting.

...cry with someone.

...feed the squirrels.

...listen to birds singing in my back yard.

...watch a child play.

...sit under the trees.

No, I'm not resolving to change my life in big ways, but to live my life in small ways that have great meaning.

2010-01-01T09:40:00.002-06:00

Happy New Year care giving friends. May this year be a year for moments of joy. May you have time and energy to enjoy little pleasures. May those we care for feel loved and may we each feel appreciated.

We don't know what our futures hold, but we can face it knowing our Father walks before us.

Much love and peace,
Paula

Loss of a friend....

2009-12-28T00:58:00.002-06:00

A fellow caregiving wife has lost her precious husband this Christmas. My heart grieves for his sweet family. I know his family is grateful for the time they had with him, and also that his pain and suffering is over, but they will miss him terribly.

The memorial service will be this week, so please pray for them.

Merry Christmas

2009-12-24T01:52:00.003-06:00

From our family to yours, Merry Christmas. May this Christmas bring the blessings of love, joy and peace to us all.

"For unto us a child is born, unto us a Son is given...." Isaiah 9:6

New Poll on Spousal Caregiving

2009-12-20T18:35:00.001-06:00

Our old poll asked how long you have been a caregiver. Most responded 11 or more years. I was surprised at that. Talk about long term care!!!

We now have a new poll and I'm curious, what do you find more difficult to handle when it comes to caregiving. Let's see if I am surprised by your answers to this poll.

Finding Daily Respite

2009-12-19T18:14:00.003-06:00

Everyone knows that a care giver needs time of respite. We needs breaks from the demands of being constantly on call. Wouldn't it be wonderful if we could take a 4 day break every month or so to get away and refresh? Most of us don't have the time, back up caregivers, money or energy for that, but we can take a daily respite. There are days that my Dear Hubby doesn't need me as often, and those are the days that I find time for short respite.

Today, I took a three hour nap. Like an old family friend once told me, if you slept, it was because you needed it. I also sewed a bit on a few quilt blocks. Yesterday, I took my oldest daughter out to a late lunch. Sometimes, I get Dear Hubby settled in bed, water on his side table, remote control in hand, and say, I'm going to go in the other room and read some quilting blogs. Or sew a bit. Or when the weather is a bit warmer, I sit outside on the deck and drink a cup of coffee or Dr. Pepper. I have taken time to write a note to a friend, listen to music, read a book, or walk to the mail box.

One day soon, maybe in January or February, I'm kidnapping a girlfriend, and hitting the road. I'm taking a respite trip for a few days. The last respite trip I took was August 2008. That's too long!!! So until then, I'll make do with a few hours or even minutes here and there.

So, what do you do for a daily respite? Share your ideas.

So, I just have to ask......

2009-12-17T22:20:00.006-06:00

how has YOUR day been?? Have you had a rough time of it today? or have things gone smoothly?

I'll be honest, and maybe you'll feel free to be honest too. Today started off rather badly. I had plenty of time to get things done before heading out the door to spend time with my daughter, but something went wrong and then went from bad to worse.

It never fails....when I need to get out the door at a certain time, things always go wrong. My back has been bothering me the past few days and of course, this was the day that Dear Hubby needed to be transferred several times in a row. Ughh. So between painful grunts and whines, I was feeling the pressure build inside. Certain things around here can only be done by me, and when I'm not feeling 100%, well, we're just asking for TROUBLE!

And, then, literally 10 minutes before I walk out the door, we have a catheter issue and everything has to be changed. I was NOT happy, and everyone knew it. Dear Hubby was snappy, Dear Daughter dawdled, couldn't find her shoes and I was time pressured!!! I left the house with a bad attitude, snapping at my hubby and my daughter.

Of course, ten minutes down the road, I felt HORRIBLE. I did have a nice time out with Dear Daughter and when I got home Dear Hubby and I both apologized for our ugly words, sharps tempers and bad dispositions. And, of course, I apologized to my daughter.

The day has ended well, though. And, we're all on speaking terms....nice speaking terms.

I need to remember to plan better, prepare for last minute hang ups and most of all, remember to cut myself some slack, forgive myself and try again.

And, remember, tomorrow is a brand new day!

2009-12-16T13:15:00.001-06:00

God of our life, there are days when the burdens we carry chafe our shoulders and weigh us down; when the road seems dreary and endless, the skies grey and threatening; when our lives have no music in them, and our hearts are lonely, and our souls have lost their courage. Flood the path with light, run our eyes to where the skies are full of promise; tune our hearts to brave music; give us the sense of comradeship with heroes and saints of every age; and so quicken our spirits that we may be able to encourage the souls of all who journey with us on the road of life, to Your honour and glory.

-------Augustine

Where is my Joy?

2009-12-16T10:54:00.004-06:00

We often think of joy as the thrilling, jubilant voices of angels singing praise to the newborn KING!!!! And, yes that is joy. Radiant, abundant JOY!!!!

But what happens when you are going through the most difficult trial and test of your life? What happens when year after year you labor to care for the one you love, and the joy seems to be fleeting or maybe even, dare I say it, gone? How can we watch the one we love change, grow weaker, suffer and hurt and still feel JOY?

Dear Hubby and I discussed joy this morning....wondering what does it look like? Is it a constant PRAISE JESUS moment? Is it smiles, rainbows and hearts?

Our conclusion is perhaps joy in the midst of suffering is more like this: a quiet hope and peace.

When caring for someone with chronic illness, perhaps joy comes not as a smile, laugh or happiness. Perhaps it comes as a prayer.

Lord Jesus, today, there isn't much to smile about. I am hurting. My loved one is suffering. But this I know, you are here. Things may not change, they may worsen. But you are steadfast and faithful. My hope is in YOU. I know that you hold my heart and hand. I remember that my eternal security rests in YOU. I lie here, at your breast, as John did and say with Simon Peter, "Lord, to whom shall we go? thou hast the words of eternal life."

Great Opportunity!!!

2009-08-30T19:42:00.003-05:00

The Lord recently allowed me the Great Opportunity to share with a group of ladies what HE is doing in our lives and hearts. What a blessing it was for me to share HIS faithfulness with a receptive and loving group of ladies. I was asked to teach a lesson entitled, "Enduring Through the Difficult Times" at a ladies' retreat on August 7th.

I was able to share the path that my husband and I have walked together, the difficulties we have faced, including many hospital stays with our children, our daughter's preterm birth, miscarriages, trials and testings and the past 10 years of walking the road of chronic illness.

The Lord has taken me on the dark, difficult roads so that I would find HIM. I am amazed at the work the Lord does in our lives to draw us into relationship with HIM.

Thank you so much Christi, for giving me the opportunity to share my heart!!!

Where are you today? Do you feel alone on the difficult road? You are NOT alone. Our Father allows difficult times to cause our focus to be on Jesus and HIM alone. He walks the path before us, and calls us to follow Him. Can we say with Job, "Though he slay me, yet will I trust in him:" (Job 13:15).

Impossible Situation or Great Opportunity???

2009-04-19T09:38:00.000-05:00

I recently came across this quote by Chuck Swindoll:
"We are all faced with a series of great opportunities brilliantly disguised as impossible situations."

I shared it with a friend, who responded:
"I would not take away one brilliantly disguised impossible situation, would you?"

My answer???
"No, I wouldn't. I'm glad the Lord took me through them, I learned so much. But, I don't want to relive the pain of them."

Would you take away your brilliantly disguised impossible situations?

Facing the illnesses, disabilities, pains, disappointments, fiery trials, fears and worries, causes our hearts to be turned more fully to Christ. And, for that reason alone, I would not remove one of the impossible situations I have faced.

They say hind sight is 20/20....but I'm afraid, for some of us, it's not. Some of us face these impossible situations and walk through them, barely surviving and at the end of it, become bitter towards God and others, instead of taking them and using them as great opportunities to grow in our faith. At the end of the trial, some may look back and say, "What a waste." It doesn't have to be that way.

I've walked that narrow tight rope between spiritual growth and bitterness. Sometimes, I leaned precariously close to falling off into bitterness. Thankfully, the Lord continued calling my name, drawing me to HIM. I am still walking the tight rope toward Christ, eyes fixed on HIM. There are still plenty of opportunities to fall into bitterness, but God is faithful.

Each of us, regardless of what we are experiencing, can find great opportunities for growth. That is the purpose of trials. Trials are not easy and there are times that we just want the pain of the trial to end.

We have no guarantee when it will end or if it ever will. We may live to the end of our days with this difficulty. Each moment, we must make a conscious effort to accept whatever the Lord gives us, knowing it is for our good. And, then we must look for the opportunity to share with others HIS faithfulness. We must reassure our hearts with HIS word. HE is with us, HE walks before us.

What are the opportunities we will have because of this trial of care giving? I don't know....today, our time and energy may be high demand, but we don't know the future and the way the Lord wants to use us. We may be able, along the way, to encourage another brother or sister in the faith. Perhaps we'll change another person's perspective on suffering. Maybe we'll find ourselves with a ministry we never would have thought of before. Where ever the Lord leads us, He will use us.

Let's not waste this time of learning and growing. Let's learn the lessons the Lord wants to teach us and wait for those opportunities to show themselves.

2009-04-16T08:04:00.001-05:00

Fear thou not;
for I am with thee:
be not dismayed;
for I am thy God:
I will strengthen thee;
yea, I will help thee;
yea, I will uphold thee
with the right hand
of my righteousness.

Isaiah 41:10

Happy Resurrection Day!!

2009-04-11T10:24:00.003-05:00

Photo: Freefoto.com

2009-04-08T17:59:00.004-05:00

Wondering where I've been???
Visit my quilting blog, A Latte Quilts,
to see what I've been up to!!!!

2009-04-08T00:22:00.002-05:00

Psalm 16:8-11

I have set the LORD always before me:

because he is at my right hand, I shall not be moved.

Therefore my heart is glad, and my glory rejoiceth:

my flesh also shall rest in hope.

For thou wilt not leave my soul in hell;

neither wilt thou suffer thine Holy One to see corruption.

Thou wilt shew me the path of life:

in thy presence is fulness of joy;

at thy right hand there

are pleasures for evermore.

The Least of These.....

2009-02-26T10:44:00.003-06:00

There is always the danger that we may just do the work for the sake of the work. This is where the respect and the love and the devotion come in - that we do it to God, to Christ, and that's why we try to do it as beautifully as possible.

-Mother Teresa

Mother Teresa devoted her life to serve God, and she did this by serving humanity. She went into the slums and loved the unlovely, the neglected, the sick, the destitute. She was the epitome of "caregiver". She understood that her service was really to Christ. She saw each person that she ministered to as Christ. She understood the verse, Matthew 25:40,

"Verily I say unto you,
Inasmuch as ye have done
it unto one of the least
of these my brethren,
ye have done it unto me."

Matthew 25 will help us to put our service to those God has placed in our lives into perspective. Lord, help me to remember to give a cup of cold water in your name.....and keep my motive pure, let me serve out of a heart full of love for YOU!

Gratitudes...

2009-02-21T12:55:00.000-06:00

Copied from my quilting blog.......

Yesterday, my plans were to spend time working on the secret project, but life interrupted. I got a phone call that Dear Older Daughter was in a wreck. I went to pick her up and call the wrecker service, set up the repair, etc. As we pulled away from it all, I decided she needed to go to the hospital.

She banged her head and shoulder pretty badly, and while she was dazed at first, she seemed to be better. Once we got into the van and started driving, she became dizzy and nauseous. A quick (6 hour) stop at the ER, one CAT scan and some x-rays....we're a tired bunch around here today. Thankfully, Dear Older Daughter has some bruising and is REALLY sore, but honestly, we have so much to be thankful for!!!

We will find out over the next week the total damages to the car. Hopefully, it can be repaired.....and not totaled. Aren't we grateful we have full coverage?? Wow....insurance is really worth it, not to mention the fact, required!! LOL

Off to get a haircut today, and I'll be enjoying some wonderful singing this afternoon. Dear Older Daughter, Dear Younger Son, Dear Friend of the Family and Dear Future Daughter in Law are having quartet practice here at our house!! Yay, I love hearing them sing. They will be singing at a local church tomorrow.....so glad I'll be able to hear them, even if I can't go to the service with them. Life is good.

2009-02-14T09:58:00.000-06:00

Happy Valentine's Day
Dear Care Giving Friends!!!!!

Caring for more than your spouse????

2009-02-08T23:35:00.004-06:00

Wow....it's been a week. My mom has been down with her knee. Sunday, I had to call my sister to take mom to the hospital. I didn't have anyone to leave Dear Hubby and Dear Younger Daughter with. She was having really bad knee pain and her knee and the bend of her knee were really swollen.

They did x-rays and said she had arthritis in her knee and needed to stay off it for 2 days and then she could go back to work. She did, kind of.....which means, I was waiting on her and Dear Hubby! She went back to work Wednesday and Thursday.

Thursday afternoon, she came home and her knee was in BAD shape. She didn't tell me. But she rested with it up. Around 6-7, I realized that she was really favoring that knee more. I looked at it and it was HUGE. The entire leg was swelling. So up on the couch again but even with it up, throughout the night, it got bigger and bigger. I thought it was a blood clot and took her to the ER again. (This time, Dear Older Son was home and could stay with Dear Hubby.)

Ultrasound and x-ray show that she has arthritis, bursitis and a Baker's cyst. The cyst is leaking causing the swelling. But should resolve itself. She had to sit with her leg above her heart so that the leg can drain back toward the body and her body can get rid of it. She was down for another several days, unable to do anything for herself or to help me like she normally does. So, I was back to doing everything!!

Sometimes, when it rains, it pours. She is doing SOOOO much better today. She was actually up and walking around and didn't have any pain. The leg still has a tiny bit of swelling, but it's so much better!! She's going to her Dr. for a follow up tomorrow. Hopefully, she'll be able to get back to her regular schedule.

I hated to see her hurting so terribly. I did my best to wait on her, but honestly, she doesn't like it!! She is so used to being the one doing the waiting on someone else. We never knows what lies ahead.....but we have to learn to take one day at a time.

We're all hanging in there, aren't we???

2009-02-04T11:01:00.002-06:00

This past month has seen a slight progression in my Dear Hubby's illness. It seems that he is having more and more days of "I just don't feel good." It seems to me that he is spending more time in bed, less time on the computer and just generally feeling tired. He is taking Aleeve each night now to help with his aching legs, his tailbone and hip pain. Not fun for him at all!

You know, this is what I've been talking about. Just as you get settled in your routine and things are going along smoothly, you have a change in your loved one's illness. Something doesn't seem right, or maybe it's just a progression. Oh well, he and I are dealing with it.

I recently had two friends send me brochures about a caregiver's conference coming up this month. I've been before, and as I read through the brochure, I realized that this conference was not for me.

It seems that most caregiver conferences, sites, etc. deal with caring for an aging parent and/or someone with Alzheimer's. This conference does the same. I'm grateful for that because the two friends who sent the brochures are currently dealing with their mother/mother in law who both have Alzheimer's. But what about those whose spouses are young....relatively? What about those who care for someone with physical disabilities? What about those who are caring for spouses, younger children and parents all at once? Yeah, I didn't think so. There just isn't much out there.

I recently spoke with some ladies from the church who came by to visit. I have had a difficult time dealing with all this because I was unprepared. I long to have a mentor, someone I can call and ask for advice. I mentioned to the ladies that I wish there was someone in our church who had walked the road before me, could illuminate the path and give guidance....and there is no one. Talk about feeling isolated! That's when I was told that there has to be a first. There has to be an adventurer who takes the unknown path, clears the way, draws the maps, points out the pitfalls, etc.

Well, honey, that's not me. I'm a follower, not a leader. I take direction well, I can listen and learn. But, please, don't ask me to lead!!!

Yes, I am on the journey into an unknown area, but along the way I am finding places to rest and nourish my soul. I've found people who walk the path beside me to keep me company, I have diversions to occupy my hands and mind while I rest. My food? The word of the Lord. I have found nourishment and refreshment in the words of my Father.

The road will be long, the path rocky. Beset with pitfalls, dangers and loneliness. Some days will be dark and the rain will fall, but I have hope..... while I walk the path, I can rest in the knowledge that Someone walks with me and carries me.

I don't have to be an adventurer going into unknown territory. I have Someone to follow. Sure, I'll still seek out advice from others, but I know that ultimately it is the grace of Christ alone that will allow me to walk the path He has designed for me. Wow....HE designed the path, so HE must know the way. Following Christ, wherever HE leads.

2009-02-02T21:16:00.000-06:00

The LORD will give strength
unto his people;
the LORD will bless
his people with peace.

Psalm 29:11

Click for the link to the article

2009-01-31T12:27:00.002-06:00

Everything changes when a spouse cares
for a partner with a chronic illness

By Bill Kettler

Hurting, in more ways than one....

2009-01-29T08:06:00.003-06:00

It's nothing traumatic or dangerous. It's not extreme....but for the past two weeks, my Dear Hubby has not felt well. He can't really put a finger on it, exactly. He is having a hard time turning and moving in bed. He can't move his legs on their own, but I made some leg lifters for him quite a while back and he's been able to use those, up until now. His legs are aching more and more, he's getting weaker and some days, it's just better for him to rest in bed.

I hate times like this. Times when the one you are caring for needs help and while you do what you can, it doesn't alleviate their discomfort. My husband does not complain....but it's hard to hear him say time and time again, "I don't know honey, I just don't feel good." "I just can't get comfortable." My heart hurts for him and I just wish I could wave a magic wand and make him feel better.

If you have a few moments, please pray for him and for us. That he will be able to rest comfortably and that his legs will stop aching. And, pray for me, that I will have the energy and strength to do what needs to be done each day.

2009-01-27T00:42:00.000-06:00

True happiness is not attained
through self-gratification,
but through fidelity
to a worthy purpose.

Helen Keller

2009-01-26T06:19:00.000-06:00

I will praise thee, O LORD,
with my whole heart;
I will shew forth all
thy marvellous works.
I will be glad and rejoice in thee:
I will sing praise to thy name,
O thou most High.

Psalm 9:1,2

What is so difficult about chronic illness??

2009-01-23T12:42:00.005-06:00

I've been thinking again. Uh oh....it usually gets me into trouble. LOL But, here goes anyway.

Having a disease that is chronic and progressive brings to my mind one word. Change. Each morning is a new day in many different ways.

The word "chronic" means marked by long duration, and often by slowly progressing seriousness, always present, constantly vexing, weakening or troubling. Hmm....that definitely sounds like MS.

The word "progressive" means increasing in extent or severity. Yep, that's MS.

The thing is, each day you awake you really aren't sure what you are going to be able to do that day. Each and everyday, you wake knowing that you have an illness that isn't going away. It's not a cold, the flu or a virus that will run it's course, and tomorrow you'll be feeling better, back to your old self. Nope, this awful fatigue, these aches and pains, the blurry vision, the partial paralysis, the spasticity, the weakness, will all be here tomorrow.

The other thing is that not only will it be here tomorrow, it may be worse. Sure, it might let up just a bit in one area or another, but it seems that another area will be worse. And each day you wake, something is going to be more difficult to do.

These changes take place slowly and sometimes they are almost unnoticeable. And, the way you adjust is almost unnoticeable.

One day, about a year ago, Dear Hubby and I were talking about his illness and the resulting care that was required. I had noticed that one night, when it came time to go to bed, he asked for me to help lift his legs into bed for him. I did it automatically without thinking, and he settled in for the night. From that day on, I helped lift his legs into the bed, after he transferred from his wheelchair and sat on the side of the bed. No big deal...

Fast forward a few months, and Dear Hubby was needing help transferring. He was no longer able to lift himself from his wheel chair to the side of the bed. Hmm...no big deal. Transfer, lift his legs, he gets settled, we go to sleep.

Fast forward a few months more. I transfer Dear Hubby, lift his legs, he begins to get settled, and then says, "Honey, I'm sorry, can you help roll me over?" Sure, no big deal.....The next night, I transfer, lift his legs, get him into the prone position, roll him over. See, no big deal.

And, so it continues. Now, I transfer, lift his legs, lay him down, roll him over, pull him to the side of the bed, pull his legs up, put a pillow between his knees, shift his pillow down under his neck, pull up the covers, tuck him in, kiss him goodnight, park the wheelchair out of the way, turn out the light, get into bed, turn out my light. Where I once slept through the night, I am now awakened periodically to help adjust him in bed in the middle of the night. No big deal.

Now, imagine this same scenario in every area of life. Bedtime, baths, restroom, eating, etc. Each and every area of his life now requires care. Even when he is lying in bed resting, he needs help. You know how it is when you lay down to rest. You turn, you raise your left leg, you put it down, you shift your weight from one hip to the other, etc.

Amazing....my husband's disease is chronic and progressive. And, you know what? My caregiving is too. Chronic in that each and every moment it is here, it will last a long time, always present. My caregiving is progressive in that each day I will need to do more.

And, you know, it's ok. I'm fine with that. I signed up for this when I vowed "in sickness and in health". Maybe I didn't REALLY understand at the time what that would mean, but the words are still real and the committment is the same.

I've also seen the way things have changed in my personal life too. For example, I'm a quilter. I have met with several ladies from church once a month for years. We get together, have a devotional, sew, have a meal, show our projects, ask advice, laugh, cry, giggle, and such. I've enjoyed doing this for years. The beginning of the year, I realized that I really can no longer attend our regular quilt bee. I can't take one day where I am gone for 6-8 hours and spend that time with my quilting buddies.

Does that make me sad? Sure, it does. But honestly, considering all the things Dear Hubby and I have lost, it's not that bad. Really. I can't grieve over every loss, or Dear Hubby and I would spend each morning crying in our milk. Each day brings loss.

I can no longer make 6 hour lunch dates regularly. Each year, when Quilt Show rolls around, I assume I won't be able to attend. Because I'd rather be pleasantly surprised that bitterly disappointed.

I'm learning to deal with change. I don't have time to sit and visit like I once did. I can e-mail rather easily because I do that between responsibilities. I can take time to write on my blogs, because Blogger saves my work as I go and I can take all day to write a post. I can enjoy short 2 hour visits from friends periodically. But life has changed.

Where once we had people over frequently and they were apt to stay until the wee hours of the morning, we can't do that any more. Dear Hubby tires having people in our home. Even having our friend D stay with hubby or my MIL here, tires Hubby out and he needs time to recoop afterwards. It throws him into a fit of fatigue where he can do nothing but rest the next day.

Dear Hubby has seen some really awful changes in his abilities and in his own way, he mourns those losses. There are times that I hear him struggling to do something he's been doing for all his life, and I hear him mutter, "dadgum". Yeah, that's as bad as his language gets....then I hear, "Honey, I'm sorry, can you come here. I can't....... will you help me?" And so he looses another bit of freedom and I gain a bit more responsibility.

We work together through our frustration and find what works for him and for me. We have discussions like, "You need to do it this way" and I say, "Well, I'm doing it, so you need to let me do it the way that works for me" and he says, "well, that hurts me, so you can do that" and I say, "ok, is that better?" and he responds, "yeah, that's great." We're learning to work together, all day, everyday to make his life and mine better.

Yeah, sometimes we're gripey and complain, but honestly, we're closer today than we've ever been. (Which is a miracle when statistics show that 80% of marriages faced with chronic illness end in divorce.) We giggle and laugh, we cry and whine together. We make fun of ourselves and each other, and mainly we stick together through thick and thin, through heartache and pain, joys and laughter.

We've grown in our faith, we understand scriptures we never did before. We're learning to walk in grace and faith. We're learning to "come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16 We are seeing our Father in heaven in ways we never have before. We are learning to trust that God is working even when we cannot see His hand. We are trusting that "all things work together for good to them that love God, to them who are the called according to his purpose." Romans 8:28

And we are finding that the scriptures are true:

"Two are better than one;
because they have a good
reward for their labour.
For if they fall,
the one will lift up his fellow:
but woe to him that
is alone when he falleth;
for he hath not another
to help him up.
Again, if two lie together,
then they have heat:
but how can one
be warm alone?
And if one prevail
against him,
two shall withstand him; and
a threefold cord is not quickly broken."

Ecclesiastes 4:9-12

The "C" Word

2009-01-21T23:23:00.004-06:00

Please pray for two dear friends who are battling cancer.

The first friend is one I met through blogging. J loves the Lord and has become a fast friend. J will be having surgery on the 26th of this month. Please pray for J's spouse who will begin care giving. Pray for grace, peace and comfort for them both, as well as their family.

The other one is a friend our family has known for 14 years. The entire family are sweet, sweet Christians that each member of my family has grown to love. D will be having surgery on the 10th. Please pray for D's spouse, who is continuing care giving. Pray for strength, peace, and wisdom. D's spouse has been dealing with all this for quite a while now. And, please pray that D will recover quickly.

Thanks so much Dear Caregiving Friends.

2009-01-19T21:18:00.002-06:00

Never bear more than one trouble at a time.
Some people bear three kinds -
all they have had,
all they have now,
and all they expect to have.

Edward Everett Hale

Overcoming Part 3

2009-01-16T08:41:00.004-06:00

Overcoming Part 1 discussed the importance of encouraging yourself through God's word, and Part 2 discussed the importance of music in our lives as a way of keeping our hearts encouraged.

This blog post, Overcoming Part 3, I would like to discuss "thinking". Our thinking is so important to the health of our hearts, minds, emotions and spiritual lives. The Lord gave us a mind with which we are to think the thoughts He thinks. We have the mind of Christ, I Corinthians 2:16. The scriptures tell us that, "For as he thinketh in his heart, so is he:" Proverbs 23:7a

When we were lost and without Christ, we were under the bondage of "wrong thinking". We thought that the way to happiness was in pursuing our own desires. We thought that if we did everything we wanted to do, everything we dreamed of, we would finally find happiness and fulfillment. Once we came to Christ we began to see that the only way to find our life was to loose it (Matthew 10:39). The only way to have fulfillment was to give our lives fully to the cause of Christ.

I've struggled with thinking sad and depressing thoughts. It's so easy to get sucked into. I mean, seriously, when you look at this caregiving thing.....it can be depressing. I'm not always good at keeping my thoughts under control.

Here are some areas of thinking that I've had to bring under control.

1. I can't do this another month, week, day, minute. That's right, I really can't, but the Lord can. After all, aren't we called to full and complete dependence on Him? He doesn't call us to more than we can bear. But, He can and does, stretch us to the very limits though. I've seen it happen time and again in my own life. I have learned that when those thoughts hit me, as they surely will, I must take time out. Time away from the difficult situation. I may take 30 minutes at my sewing machine, 20 minutes to read, 10 minutes on the back porch to breathe deeply or 5 minutes alone in my closet....literally. Sometimes a short break is not enough, and I need a few hours. I make arrangements for breaks. And on the days that are really hard, I just tell myself, "You can make it to lunch. Then you can rest." Or "You can make it for another 30 minutes." Sometimes, you have break the day into manageable bits. On those days, a nap certainly wouldn't hurt!

2. No one understands. Sure, no one really, truly gets it. I mean, after all, the illnesses are different, the disabilities are different, the needs and amounts of time and work are different. But, what I have found is that there are some who do get the general idea of how I feel and what I am experiencing. I find myself gravitating toward those who live a life similar to mine. Finding that there are others who get what I am experiencing and live it each day, helps me to know that if they can survive, surely I will too.

3. I can't. I can't do this, I can't do that. Limits, limits, limits. But, honestly, I can do the things that are really important to me. I may have to limit my activities, but if I choose wisely, I can do some of the things I've wanted to do. The help that I have in my home weekly, 4 hours, 2 times a week, have allowed me to get my "regular errands" done. Grocery, hair appointments, dental appointments, post office, etc. But, in order to do additional things like taking our youngest child to the Rodeo, I've had to ask for additional help from my children. I've found that I can ask friends to drop something in the mail box, run by the bank, pick up 3-4 items from the grocery, etc. so that I can use some of my time off for a fun outing. I'm still working on this....and I'm learning to prioritize. Not easy for any of us, right? A friend once shared with me that we change the things we can....nothing wrong with that. I mean, if there is something particular that is bothering you, causing stifling limits that you can't imagine living with, and you can change them, then do. Other limits we will just have to learn to accept God's grace for.

4. I want my old life back. Ok, the truth is, the is the one that I have had the hardest time controlling. Why is that? Because, I had an AWESOME life. My kids were great, my husband was great, I loved my role as wife and mother, I enjoyed home schooling....I was comfortable. Our family went on vacations together, we visited family, we enjoyed friendships and times together. Life was good. But, you know, sometimes things change. I can't understand why God chooses some to suffer illnesses that change everything and chooses some to continue their lives as they had always planned. You know, I won't ever have my old life back....and that is sad. Thankfully, the Lord does give us memories to carry with us. My husband and I frequently talk about the "old days" before the diagnosis that changed our lives. I am trying to learn to live the life the Lord has chosen for me. I'm not trying to be depressing, but knowing that the only things that you can share and experience with your husband will have to take place in your home, or maybe even from his hospital bed. It is limiting. But, on the other hand, we are both learning to enjoy the simple things in life. A shared conversation late at night, an old black and white movie that leaves us both in tears, a paragraph from a book, a belly laugh over a funny slip of the lip or a funny clip from YouTube.

I want to learn to live a life of gratitude. I do have much to be grateful for. I have a family that loves me, a husband that loves and appreciates me. We are still able to communicate in many ways. I have a church family who cares and shows their love for us in so many ways. We have a roof above our heads, food in the pantry and provision each day for our needs. We have a Heavenly Father who sees and knows us. A Father in heaven who gives grace for the moment. I am grateful that I am healthy enough to serve my husband and family.

My thinking is not always right, but I know that the Lord is faithful to continue teaching me the lessons He wants me to learn. This doesn't mean that each day I live will be filled with nothing but gratitude....but that is what I am praying for. In those times of deepest sadness, and difficult times, I pray that the Lord will open the eyes of my heart to reasons for gratefulness.

My prayer is that my heart's mind will focus on the things of Christ in my times of trial and testing...on Christ Himself.

Finally, brethren, whatsoever things are true,
whatsoever things are honest,
whatsoever things are just,
whatsoever things are pure,
whatsoever things are lovely,
whatsoever things are of good report;
if there be any virtue,
and if there be any praise,
think on these things.

Philippians 4:8

What is MS?

2009-01-14T21:36:00.002-06:00

Video from YouTube.....

Overcoming Part 2

2009-01-13T00:01:00.005-06:00

My last post talked about strengthening and encouraging your heart in the Lord. I'd like to continue this thought with another way in which we can encourage our heart.

I'd like to remind us of a well known story found in I Samuel where David played his harp to refresh King Saul. The scripture speaks of Saul having an evil spirit. I'm sure Biblical scholars could argue and debate the meaning of the word evil, but my study has shown that the word evil could have several meanings.

Could it be that Saul was dealing with a disagreeable, sad, unhappy, hurtful, and distressful spirit? Feeling unsettled, unhappy, and distressed, Saul called for David to play music for him. The scriptures tell us that the evil spirit departed from Saul. Now, I really am not a Bible scholar and have not studied this story out thoroughly, but from my experience, music really does play a vital role in the way we relate to our Father in heaven. I do know that music will be heaven. Revelation 5 tells us that the saints in heaven will sing a new song. I can not wait until that day.

For quite a while, I had cut music almost completely out of my life. One of the problems that my husband experiences with his MS is that noise bothers him. Regardless of whether this noise is "good noise", like music or family chatting, listening to sermons or background noise. It overwhelms his system and causes him to tire quickly. In order to accommodate his weakness in this area, our family has tried to control the level of noise in our home. Including cutting out loud discussions, endless chatter and even music, unless listened through head phones. It's not easy, because by nature we are a "loud" family!! LOL

I began to realize that music really did minister to my soul, especially good Christian music. I decided that whenever I was in the other room, away from my husband, doing my tasks throughout the day, I would make a point to listen to music. I started playing it while I sat at the sewing machine, while I worked in the kitchen, when I was alone in the vehicles, etc. And, it was like a balm to my soul.

I began to listen to the words of the great music I was being exposed to and found my heart being reminded of God's goodness, His greatness, His faithfulness and steadfastness. Now, I am not saying that everything out there with the label "Christian music" will have this affect, but I also refuse to try to tell others what to listen to. Just like every other area of our life, we must listen to the Lord's direction.

Find ways to nourish your soul with music. When we evacuated last year, late summer, we took up residence in a hotel in Ft. Worth Texas. My daughter and I were able to take one evening and spend it listening to a live concert of The Singing Men of Texas. I sat and cried as I listened to approximately 250 male voices singing praises to the Lord. I can't even begin to describe the spiritual reaction I had that night. It had been a very stressful time and sitting there hearing my Father in heaven praised and glorified brought with it a deep sense of gratitude and love for Him.

Another time, a small group of young adults came to our home and sang for us. My husband and I sat, listening, with tears streaming down our face as they sang, "Untitled Hymn"and several other songs. The words were like a medicine to my hurting heart. What a ministry it was to us.

Now, in my home, I have found a way to listen to music that ministers to my heart. I found an online radio station where I have some control over what I can hear. I typed in the name of an artist that I remembered listening to many years ago and one whose songs are sung in our church by a godly man with a wonderful baritone voice. Other songs come up and I can click whether I like them or not, and the program continues presenting me with songs to choose from. I've been able to find new artists and new songs that I've never heard before.

One reason I am not going to mention artists that I am listening to is that honestly, I do not want to be judged. There are some who will say, "This artist is this, does this, acts this way, etc." I am learning to hear the voice of my Savior as He directs me. I am learning to understand that God's voice will tell me no when I don't need to listen and if I don't have that, I listen with freedom. I choose to listen to only Christian music.

Perhaps you have CDs that you can listen to. I do. My children and several of their friends at church made a CD and I listen to that. I also have other young adults that have made wonderful CDs with singing, piano and violin music. These are the ones I listen to in the vehicle.

The main thing is that we find ways to nourish and refresh our souls. Make sure that music is soothing to your heart, edifies the child of God to follow Christ and exalts the name of Jesus. You will see that it will be like a medicine to your heart.

Overcoming Part 1

2009-01-12T12:35:00.009-06:00

Until you've walked the road of caregiving, you can't begin to understand the depth of emotion that you can experience. It's like taking everything you've ever known and throwing it up in the air. Fifty percent of it will still apply, and the rest, while the truth will remain the same, will have to be reapplied differently.

I'm learning more and more about myself through this difficult time. I've learned that I AM NOT like everyone else. I have a different past, a different personality, a different spiritual gift, a different bent, a different situation, and I will have a different course of personal healing. None of us can be expected to apply Step 1, Step 2 and Step 3 and be done.

These are deep waters through which we pass. These are difficult times. These are trials and testings. These are the things that reveal who we are. These are times that try the soul and test your faith. These are times that strip us of our independence and cause us to fall on Jesus. These are the times that remove our judgmental spirit and teach us to love and accept people just as they are. These are the situations where we say, "I can't take another step" or "I can't do this." These things are beyond ourselves.

It's difficult to "Just Deal With It".

I have struggled in the past with depression. I won't go into all that lead me down that path, but let me say right here, it was not a lack of faith, a turning of my back on God, or a self-centered focus. It was many things, but I have never FOR ONE MOMENT, doubted my Father in Heaven. I have questioned whether this was too much for me to bear. I wondered where was the way of escape?

There hath no temptation taken you
but such as is common to man:
but God is faithful, who will not
suffer you to be tempted above
that ye are able; but will with
the temptation also make a way
to escape, that ye may be able
to bear it.
I Corinthians 10:13 .

If you are dealing with deep sadness and depression, may I suggest that you discuss this with your doctor? Please call a professional counselor. Get some help. It is nothing to be ashamed of and nothing to cover up and try to "deal with" yourself.

If, on the other hand, you are dealing with sadness and just struggling with feelings of fear, know that you can strengthen your heart in the Lord.

Focus on scriptures that will strengthen and encourage your heart.

Luke 18:27 "And he said, The things which are impossible with men are possible with God."

Deuteronomy 31:6 " Be strong and of a good courage, fear not, nor be afraid of them: for the LORD thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee."

James 1:2-6 "My brethren, count it all joy when ye fall into divers temptations; Knowing this, that the trying of your faith worketh patience. But let patience have her perfect work, that ye may be perfect and entire, wanting nothing. If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed."

Romans 8:31 and 32 "What shall we then say to these things? If God be for us, who can be against us? He that spared not his own Son, but delivered him up for us all, how shall he not with him also freely give us all things?"

2 Timothy 2:1 "Thou therefore, my son, be strong in the grace that is in Christ Jesus."

Colossians 3:2-4 "Set your affection on things above, not on things on the earth. For ye are dead, and your life is hid with Christ in God. When Christ, who is our life, shall appear, then shall ye also appear with him in glory"

Colossians 3:23 and 24 "And whatsoever ye do, do it heartily, as to the Lord, and not unto men; Knowing that of the Lord ye shall receive the reward of the inheritance: for ye serve the Lord Christ."

Mark 9:23 "Jesus said unto him, If thou canst believe, all things are possible to him that believeth."

John 16:33 "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world."

Romans 8:18 "For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us."

Joshua 1:9 "Have not I commanded thee? Be strong and of good courage; be not afraid, neither be thou dismayed: for the LORD thy God is with thee whithersoever thou goest."

Romans 8:37-39 "Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."

Psalm 27:13 and 14 "I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD."

Psalm 31:2 and 3 "Bow down thine ear to me; deliver me speedily: be thou my strong rock, for an house of defence to save me. For thou art my rock and my fortress; therefore for thy name's sake lead me, and guide me."

Rom 8:28 "And we know that all things work together for good to them that love God, to them who are the called according to his purpose."

Mic 7:8 "Rejoice not against me, O mine enemy: when I fall, I shall arise; when I sit in darkness, the LORD shall be a light unto me."

Phil 4:13 "I can do all things through Christ who strengtheneth me."

1 John 4:4 "Ye are of God, little children, and have overcome them: because greater is he that is in you, than he that is in the world."

Philippians 1:6 "Being confident of this very thing, that he which hath begun a good work in you will perform it until the day of Jesus Christ:"

II Timothy 4:7, 8 "I have fought a good fight, I have finished my course, I have kept the faith: Henceforth there is laid up for me a crown of righteousness, which the Lord, the righteous judge, shall give me at that day: and not to me only, but unto all them also that love his appearing."

These are just a few of the scriptures that I have found over the course of many years of searching for an encouraging word in the Bible. God's Word is our source of truth, encouragement, wisdom, counsel, and guidance. I encourage you to stay in The Word as you walk this path.

Quote by Katherine Hepburn

2009-01-09T10:45:00.004-06:00

Love has nothing to do with
what you are expecting to get
— only what you are expecting to give —
which is everything. What you will
receive in return varies.
But it really has no connection
with what you give.
You give because you love
and cannot help giving.

I certainly can't agree with every aspect of Katherine Hepburn's life, but I certainly do agree with this quote.

We are caregivers. We do love our care recipients, and we know that regardless of the response we get, we will love and care for them. Because, after all, love is not what you get, it is what you give.

I'm so grateful that today, my husband can and does communicate his gratefulness and thankfulness for the things I do each day to care for him. But what do you do when the person receiving care either cannot or, even worse, will not express gratitude? What if they are a grouch? What if they are mean, harsh, and impatient?

I'll be honest, I don't know how I would respond day after day if I were in that place. But what I do know is that the Bible gives us some instruction and practical guidelines on how to walk this walk.

Here are some scriptures that we can use to encourage ourselves in the Lord. The Lord can do his work, without my preaching this truth. I know that the best lessons I've learned are those where I simply read the scripture and listened to the voice of the Lord.

“Bless them which persecute you: bless, and curse not” (Romans 12:14).

“Charity suffereth long, and is kind…” (1 Corinthians 13:4).

I must admit, I cannot love the way I should apart from a personal relationship with Jesus Christ. He will love through us and give us the grace to help in time of need.

“Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need” (Hebrews 4:16).

“And be ye kind one to another, tenderhearted, forgiving one another, even as God for Christ's sake hath forgiven you” (Ephesians 4:32).

My Dear Hubby and I recently had a discussion about this. I asked him, "What do you do in this case? How would you handle that?" I asked him to think it over and give me some scriptures that would address this. The above scriptures are ones he shared with me. Thanks Sweetie.

2009-01-07T21:58:00.001-06:00

This is my commandment,
That ye love one another,
as I have loved you.
Greater love hath no man
than this, that a man
lay down his life for his friends.

John 15:12 and 13

Love and Respect

2009-01-06T10:45:00.004-06:00

We all know what love is....or at least we think we do. Years ago, Dear Hubby and I went to a conference all about love. It was called, "Love is a Decision". And, that's what I think love is...a decision. I chose my husband to be a part of me. I decided that he would be the one and only in my life. I chose him to be at the top of my priority list, right under my commitment and love for my God. There is never a day that I question, "Do I love my husband?" The decision was made, never to be rethought.

Fortunately for us, not only is the decision there, but usually the emotion of love is there too. I FEEL love for my husband. Yes, he irritates me at times, and I have a pretty good idea that I frustrate him too....but we both "feel love" for one another. Some days, I look into his eyes and my heart is flooded with love for this man. I would give my life for his. Sometimes I even wish that I could take his disease from him and carry that burden for him. I truly, deeply love my husband.

I also respect my husband. Back when we lived the traditional roles of husband and wife, that respect translated in the way I related to my husband. I asked questions, listened to his answers and then did my best to please him and follow his wishes. I tried to "obey" him as I promised in my vows. Not in the sense of "blind obedience", but I tried to place his plans and wishes above my own. The special thing about our relationship? He tried to do the same for me. We had mutual giving. He wanted to please me and I wanted to please him. Today, some things are different.

My husband no longer has the ability to make all the decisions in our lives. There are times that I have to make decisions that go against his wishes. I hate that. I hate having to decide when and which wishes to follow. I've had to learn to say no. There are times when I physically or mentally cannot take another step. There are times that I must leave my home to get a break even though I know he wants me home with him.

Today, my respect can be shown to my Dear Husband in the way I treat him. I still try to do things that please him, but with our situation, there are times that I can't. I can't be here with him 24/7, although that is what he would prefer. I can't always get him exactly what he needs. Sometimes, I have to ask him to wait while I finish something, whereas before the illness struck, I dropped everything and ran. Now, it's just me doing the things that have to be done, and sometimes he must wait.

Respect is showing honor and esteem to another. I respect him by honoring his value as a person, by showing he has worth.

His feelings matter, his thoughts are important, his needs are important. This in no way negates my own, but as with all marriages, there must be giving of respect from both. Things change though. He cannot serve me in the way he once did, but he has found little ways to show honor and respect to me.

If you are caring for your spouse, here are some ideas of things you can do show love and respect for the one you care for:

1. Take some time throughout the day to sit with your loved one and visit with them. The work will be there later....choose the person over the project.

2. Show interest in what they are doing. My husband is still able to type....very slowly...and still likes to write out devotionals. I have to make time in the day to read them and re read them as he edits. It shows respect. He has found websites and shared them with me. We like to spend time together doing what we can. Sometimes that means watching an old war movie that I'm not necessarily interested in.

3. Ask opinions and give them choices. I frequently ask if he would prefer spaghetti tonight or soup? Peanut butter or turkey? I try to ask his opinion about whether I should do this or that on Friday or today?

4. Touch is a great way to care for my husband. He may not be able to stand up and hug me, but I can lean over his bed or wheel chair and give him a hug. Touching his face, kissing him, or rubbing his shoulder helps him to feel connected to me physically.

5. Talk kindly to your loved one. I try to use words that I like spoken to me. Sweetheart, honey, please, thank you, I'm sorry, Do you need anything? Can I help? It takes very little time to speak kindly to one another, but the rewards are great.

6. Share your feelings with one another. For some of us, that is easy. For others, not so much. I have been amazed when my husband has shared his thoughts. The only way that someone shares with you is if they feel accepted and loved. They must know that they won't be rejected before they are willing to open their hearts to you.

Our life will never be the same as it once was, but it can be good, really good. It is like everything else in life, it takes work.

Changes??

2009-01-03T10:22:00.002-06:00

The new year is all about Resolutions. People make them, with good intentions....and then in 3 weeks find that it's just easier to keep doing the same old things.

In caregiving, and in chronic illness, we like things to stay the same, don't we? I mean, even if something is hard to do, if we've done it before, over and over again, at least we have confidence that we CAN do it.

This year is going to be all about changes for us. My Older Daughter is working lots of hours and is helping two moms who are going through difficult times. One mom has had a difficult pregnancy and just delivered a premature baby. Another is having neurological symptoms caused from an inner ear issue. Both have 3 children that need care. So, she is pulling mommy duty for 6 kids under the age of 5. She's loving it.

Many have asked us, "why doesn't she do more to help you?" Well, I'm putting this on the internet to answer the world's question. I don't want her to. She is a girl. She needs her dad to be her daddy, not her patient. They have a special relationship and I don't want them to loose it. What our older daughter does for us is important. She is my friend and running buddy. She takes her little sister with her frequently to run errands, giving Dear Younger Daughter a break from routine. When Dear Older Daughter is home, she helps around the house, cooks, runs errands and keeps things straightened up.

Dear Older Son is getting married in a few short months. He has been out of the home for several years now, working with various ministries. He has been a help to our family in ways I can't go in to. He is a dear son, who wants to care for his mom and dad.

Dear Younger Son is taking a few classes at the community college near our home. He works four hours a day and will need time to study in the afternoons/evenings. He has been my right hand man. I don't leave our home unless he is here. But, now, it is time for him to start making his future happen. He wants to do something in the medical field, like an RN or a Physician's Assistant. I'm sure he'd like to marry and start a family some day, and now is the time to prepare for that. He's been very sacrificial, but it's his turn.

Dear Hubby requires 24 hour supervision. He may not need something for an hour long period, but someone has to be here to protect him, make sure he doesn't fall, get him water, food, to help him in and out of bed, get him out if the house catches fire, etc.

So, our lives are changing. I've talked to one family in our church, and the husband has agreed to come once a week and sit with Dear Hubby for 4 hours. What a blessing. This is a $50-80 gift, once a week. During this time, I will be focusing on Dear Younger Daughter. She needs to have mama time and we have plans for some little field trips and we'll even run errands.

We will probably have to hire outside help. The thought of that is overwhelming. Finding someone you trust, someone who will not abuse your husband while you are gone, and someone who will not rob you of your small, sentimental treasures.....I've even heard of people who steal toilet paper and shampoo. Can you imagine???

No, Medicare does not pay for what is called "custodial care". This was taken from Medicare's Website:

What is Long-Term Care?

Long-term care is a variety of services that includes medical and non-medical care to people who have a chronic illness or disability. Long-term care helps meet health or personal needs. Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom. Long-term care can be provided at home, in the community, in assisted living or in nursing homes. It is important to remember that you may need long-term care at any age.

This year, about nine million men and women over the age of 65 will need long-term care. By 2020, 12 million older Americans will need long-term care. Most will be cared for at home; family and friends are the sole caregivers for 70 percent of the elderly.

While there are a variety of ways to pay for long-term care, it is important to think ahead about how you will fund the care you get. Medicare pays only for medically necessary skilled nursing facility or home health care. However, you must meet certain conditions for Medicare to pay for these types of care.

Most long-term care is to assist people with support services such as activities of daily living like dressing, bathing, and using the bathroom. Medicare doesn’t pay for this type of care called "custodial care". Custodial care (non-skilled care) is care that helps you with activities of daily living. It may also include care that most people do for themselves, for example, diabetes monitoring. Some Medicare Advantage Plans (formerly Medicare + Choice) may offer limited skilled nursing facility and home care (skilled care) coverage if the care is medically necessary. You may have to pay some of the costs.

The truth is: If you have any income other than Social Security or any savings you will find there is no help for you financially. I found one website where people who are caring for chronically ill spouses shared that even WITH Medicare coverage, they were spending an average of about $5000 a year on additional medical expenses. This included co pays, deductibles, custodial care help, and medical supplies.

Think it through....could your family afford to pay an additional $300-500 a month for medical care? Many cannot and that is part of the reason caregivers are worn out, burned out shells of who they once were.

While custodial care sounds like easy stuff, it's not. It's heavy lifting, being on call 24 hours a day, be wakened in the night, and still having to run your home and family.

So, our life is about to change....again. I'm feeling overwhelmed and frightened about it. I'm so grateful that we are out of debt. I'm grateful that we have learned to live a simple life. I'm grateful that I have a loving and supportive family. But things change, and for some of us...that's difficult.

If you are a caregiver, take some time to think this through. Do you need to make changes? Is it time for help? I know from personal experience that it is difficult, but we have to survive to the end. Call someone and ask for help.

Do you know someone who is a caregiver? Perhaps it is time to contact them. Take a day to visit. Do give at least one hour's notice...not much more or the caregiver will have mowed the yard, cleaned the house, bathed the family member, washed the car and made a "little snack to share"!!!!!

Get a first hand peek at what type help they need. Take a look at the yard. Is yard maintenance needed? How about house repairs? Housework? Would a meal once a week benefit them? Maybe a call to pick up $20 worth of groceries now and then would help. How about a plate of cookies and a cup of coffee?

Warning: Caregivers are tough nuts to crack. We don't like to ask for help, we don't know why....we feel like we should be able to handle this, but we can't do it alone. I think deep inside we all know this. Maybe the family is pressuring the caregiver to do more, alone. Or maybe the ill person is refusing help. Someone has to step in and have a heart to heart. If you aren't a caregiver, maybe YOU are that person. Be gentle, loving but firm. But ultimately, it is their decision. Wait....things will change, and maybe your help will be needed tomorrow.

Happy New Year!!!!!!!!

2008-12-31T22:30:00.003-06:00

Have a wonderful
New Year Friends!!!!!

May you have a
blessed year,
filled with peace
and comfort!!!

Definition: Caregiver

2008-12-28T23:12:00.002-06:00

An individual, such as a physician, nurse, or social worker, who assists in the identification, prevention, or treatment of an illness or disability.
An individual, such as a parent, foster parent, or head of a household, who attends to the needs of a child or dependent adult.

I found this exact definition on three or four different sites. Seems a bit anemic to me!!!!!

So, I thought I'd share what I think a caregiver is....

hmmmm.....how would you define "caregiver"???

A caregiver is someone who cares for another, whether their needs are emotional (depression, bipolar) or physical (blood pressure, diabetes or other chronic illnesses), whether it is just a little bit (1-2 hours a week) or a WHOLE LOT (24/7)!!!!

I recently talked to someone who said that they weren't a caregiver yet, but knew that someday soon they would be. After further discussion, I learned that this lady was talking about her mother. She knew that someday soon, her mother would need 24 hour care. She told me that right now, all she does is take her mother to the grocery once a week, helps do some light housework and calls or visits daily to see if her mother needs anything and if she has taken her meds. Well, I informed her that she already was a caregiver for her mother. She said, "I really don't do that much."

Whether long distance or short, whether a lot or a little, your family dynamics change. You find yourself thinking of the other's need, finances, aches, pains more and more. You may think "it's just what family does for one another" but it's not always the easiest thing to do.

If someone depends on you to meet a need in their life, you are a caregiver. For many, this happens before we ever realize it. At some point, we go from finding phone numbers for our children, to finding them for our parents. We go from reminding our children to take their medicine, to reminding our parents to take theirs!!!

It's funny when you think about it, but not too funny!

If you have children at home, and are caring for your parent, you are part of the sandwich generation!!! What if you help your parent, have a child at home and care for your disabled spouse???? That's a "double decker sandwich"!!!!!

There are 44 million caregivers in the US. And, while there are varying degrees of care involved, we are doing a great service to our nation and to those we serve.

Yeah, well, now you know that not even a caregiver can define the word caregiver!!! LOL

Dove Dark Chocolate Wisdom

2008-12-28T22:22:00.001-06:00

Sometimes, a helping hand is the best gift.

AND

Love is always the perfect gift.

2008-12-27T22:01:00.004-06:00

When thou liest down,
thou shalt not be afraid:
yea, thou shalt lie down,
and thy sleep shall be sweet.

Proverbs 3:24

Tonight, Lord, as I lie down to rest, let my focus be on you. Fear can steal my rest, only you can bring peace and comfort. Let my sleep be sweet....and let me wake with a renewed sense of hope in YOU.

2008-12-24T12:01:00.003-06:00

God rest ye merry, gentlemen
Let nothing you dismay
Remember, Christ, our Saviour
Was born on Christmas day
To save us all from Satan's power
When we were gone astray
O tidings of comfort and joy,
Comfort and joy
O tidings of comfort and joy.....

May you find Christ to be your Comfort and Joy.

Smile

2008-12-23T10:32:00.002-06:00

I will smile today, Lord.
Much is happening
that may not seem to merit smiles,
but I will smile today.
I will smile because
a gentle smile reduces stress.
I will smile because
to frown would not change anything.
I will smile today because
my smile may light up someone else's life.
I will smile and someone
may mirror that smile back to me,
and I do need a smile today.
I will smile as witness to the world
that nothing can separate me
from the joy of having
You in my life.

Just when you think you're all alone.....

2008-12-22T17:49:00.004-06:00

the Lord sends you confirmation that your life matters.

Today has been a little difficult and sad for me. Some days it just hits me. I feel alone, sad and like no one understands. After my 5 minute cry, I checked my e-mail and what did I find??? An e-card from a friend at church, another e-mail from someone who told me she was "enjoying seeing the way the Lord is using you", and another note from someone who said it was "helpful knowing there was someone out there who could understand completely how I feel".

I started this caregiving blog for myself. I really didn't think that anyone would find it, much less read it. I wanted to write my thoughts on caregiving, just for my own personal growth. And, maybe, I thought, that if someone DID happen to find my blog, maybe what I wrote would help them to realize that they weren't alone. But, guess what has happened? I have been so encouraged by your e-mails, comments and notes of encouragement. YOU have helped me....you have reminded me that I am not alone.

So, I would like to say thank you to those of you that are reading this blog, commenting and contacting me. You have been a blessing to me. I am grateful that you've shared your prayer requests with me. I appreciate your kind words and I've enjoyed "meeting" so many others who understand.

If you are reading and haven't commented because you don't want to be identified, please feel free to comment as anonymous. It is an encouragement for me to know you are reading. Please know that you are not alone. I am here.

Let me know if I can pray for you, I'd be honored.

Advice to Sufferers

2008-12-19T10:34:00.004-06:00

"We also, before the temptation comes, think we can walk upon the sea, but when the winds blow, we feel ourselves begin to sink... And yet doth it yield no good unto us? We could not live without such turnings of the hand of God upon us. We should be overgrown with flesh, if we had not our seasonable winters. It is said that in some countries trees will grow but will bear no fruit, because there is no winter there.

It is not what enemies will, nor what they are resolved upon, but what God will, and what God appoints that shall be done....And as no enemy can bring suffering upon a man when the will of God is otherwise, so no man can save himself out of their hands when God will deliver him up for his glory...We shall or shall not suffer, even as it pleaseth him...God has appointed who shall suffer. Suffering comes not by chance or by the will of man, but by the will and appointment of God...God has appointed not only who will suffer but also when, where, in what way, and for what truth they shall suffer."

John Bunyan
Seasonable Counsel: or Advice to Sufferers

2008-12-16T21:30:00.002-06:00

Let nothing be done
through strife or vainglory;
but in lowliness of mind
let each esteem other
better than themselves.
Look not every man
on his own things,
but every man also
on the things of others.
Let this mind be in you,
which was also in Christ Jesus:
Who, being in the form of God,
thought it not robbery
to be equal with God:
But made himself
of no reputation,
and took upon him
the form of a servant,
and was made in the
likeness of men:
And being found in fashion as a man,
he humbled himself,
and became obedient unto death,
even the death of the cross.

Philippians 2:3-8

I thought you were my friend.....

2008-12-13T10:24:00.003-06:00

Have you noticed that Chronic Illness changes your relationships? It’s sad, but true. It can happen. Things just aren’t the way they once were and neither are your friendships.

I remember the first time I realized that my friendships would never be the same. I was talking on the phone with a close friend. We talked almost daily. She knew what I was going through. She knew the difficult time that I was having adjusting to my “new life”.

I told her that I was exhausted. I was afraid of what was going to happen to us, financially and spiritually. I shared that I was really sad and didn’t know if I could do this for another twenty years. I had just spent 15 minutes sharing my deepest feelings with her. As I talked, she said all the right things. I’m so sorry. I know. I cannot imagine. Right….

As I finished up my last few words, she said, “Man, I know what it’s like when things are hard. We are having such a hard time right now. We were looking at tile for the kitchen the other day and can’t decide which tile to get. See, I like the one with some brown in it and hubby likes the one that has more white in it. I hate it when we can’t agree. It’s just so stressful right now.”

That is when I realized, she just didn’t understand. I didn’t get mad at her, not really. I just felt an overwhelming sense of sadness. She just didn’t get it. It wasn’t her fault, but it hurt. I felt alone.

A few months later, needing a break from the routine, and just needing to get out of the house and away from the care giving, I went to a friend’s house for a few hours to help her pack. They were moving, and I knew that I could pack without having to really think. I thought that I had my emotions under control, but found out I didn’t. There were about 4 of us there, helping our friend.

As we chatted, one opened the conversation with, “And how are you doing?” I thought one second and decided to be honest. I told her that I wasn’t doing too well. I began to cry and told the small group of friends, people I had known for about ten years, I didn’t think I was going to be able to do this much longer. I needed help. I was talking of the sadness, the loss, the change in roles, watching my husband’s disease progress, seeing how this illness was affecting my children, the entire gamut of emotions that you experience when you face chronic illness and disability.

She looked at me with the strangest look on her face. She said, “Do you need help with housework? Is that what you’re talking about? Aren’t your kids old enough to help out?” I couldn’t believe that she would think I was concerned about housework. Who cared if the house was clean, the laundry done? I was dealing with real life issues and she didn’t understand. I remember walking away that day feeling more and more isolated

Sure, my husband looked ok, but didn’t everyone understand what a diagnosis of Progressive MS meant? Hadn’t they seen the commercials when they were younger that talked about MS being the “silent crippler”? They knew my husband’s diagnosis, hadn’t they understood when we talked right after we got the news, what this would mean to our family?

You see, we told everyone right after the diagnosis. Within three years of the diagnosis, he was no longer working. This is where we were. Our friends knew he wasn’t able to work. They knew he was home full time and needed a wheelchair and needed someone with him 24 hours a day. It was obvious that things had changed. We had already begun turning down invitations to friend’s homes. We’d stopped attending church regularly, we didn’t go out to dinner, to friend’s homes, and had even started having holidays at our house, because it was just easier than going to mom’s like we had our entire married life. I’d stopped teaching Sunday School and my husband had really struggled the last few times he had preached. Our lives had already changed drastically.

I walked away from that day, knowing that I would never have the same relationships with the people in my life. As much as they tried, they would never fully get it. They loved us, they hurt with us, but they didn’t really understand. And, that’s ok. One who has never walked this path will ever get it.

Then, one day, as I was thinking about people we had known and hadn’t seen in a while, I thought of Anna (name changed). She would understand. Her husband had been ill for quite a while. I wondered how they were doing. Maybe I could get some advice, some understanding from her. I worked up the nerve and called her. I was amazed at how easy it was to talk to her. We struck up a renewed and different friendship with one another. As we talked, I realized that she was struggling just as I was. She was exhausted, worn out, worried, frustrated, and felt so all alone too. We decided to meet for lunch. And, thus began a friendship with my “Tough Life” buddy.

While our husband’s illnesses were different, the emotions and struggles were the same. We understood the frivolity of kitchen tiles, and knew what it was like to see your husband change right before your very eyes. We decided this was something we needed on a regular basis. I enjoyed our time together and we discovered that neither of us could really enjoy meeting our former friends for lunch like we once did. Things had changed. We had such a difficult time relating to them. We both felt like we had nothing to talk about. I was almost at the point where humor was unheard of, unless it was black humor. Finding the humor in things that are normally not at all humorous. Laughing at death, disease, and our inability to think clearly. These are things that most people would be offended by. And yet, we decided, you laugh or you cry. And we were the only ones who could laugh at our situation.

We decided that we were good for each other. We developed the kind of friendship where we were able to look into each other’s lives and see things that maybe the other had overlooked. Many of our sentences began with, “have you ever looked at it this way” or “maybe you should” or "no, that's not crazy, you're thinking clearly here". And neither of us was offended by the advice given. She had a right to be in my business, to offer advice. She had walked the same path, she had been to the brink of the pit and she understood. There was no accusation in her voice, no lack of compassion, no cluelessness here. She got it. She cried with me and said, “What are we going to do?” Our answer was the same, we didn’t know, but we knew we would survive.

As I began to share my heart with someone who understood, I began to see my other friendships for what they really were. They were links to the past….friendships that were built on common ground. Homeschooling, children, church, family, all the things that had changed so drastically in my life. Homeschooling and little activities were no longer high on my priority list. Sure, I still had to do those things, but much less of my time and thought was devoted to them. Do the basic requirements and move on. We couldn’t even attend church regularly. Everything was different. It wasn’t anyone’s fault, it just was.

Once I found my “Tough Life” friend, I realized that my other friends could still have a special place in my life. It would always be different, but I still loved them and they still loved me. Honestly, casual friendships drifted away and I was left with only 3 or 4 close friends. Our “Couple Friends” weren’t there any more, and that was ok. It’s hard to keep those friendships alive. I can still share my heart with my friends and while they don’t get it, they do get that it’s tough. Maybe they are grateful it’s not them. Maybe they think I’ve lost it. It’s ok. It is what it is. When I do spend time with them, I sometimes feel like an alien, but I’m learning to roll with it.

I’m beyond the difficult days of being sad seeing them live their normal, everyday lives. I no longer cry when I hear of their plans to go on a family vacation. I no longer tear up when they talk about their daughter’s wedding, realizing that my husband won’t be able to walk his daughter down the aisle. I no longer hurt when they discuss their retirement years. Yeah, our lives are different, but it’s ok.

Maybe you still have great relationships with your friends…but maybe it’s time to search out new friendships. Try going to a support group meeting. Attend a caregiver’s conference. Look around you and see if there is someone out there who understands.

It takes a while to adjust to the changes this life brings and if you can find someone on the same side of the struggle, it will make the adjusting a bit easier. No one wants to feel alone….so even though it’s hard, follow the advice of scripture. “A man that hath friends must shew himself friendly: and there is a friend that sticketh closer than a brother.” Proverbs 18:4.

Make an effort to show yourself friendly. You’ll find a rare treasure if you find someone who walks the same path as you.

2008-12-10T05:56:00.002-06:00

Welcome Cross

'Tis my happiness below
Not to live without the cross,
But the Saviour's power to know,
Sanctifying every loss:
Trials must and will befall;
But with humble faith to see
Love inscribed upon them all,
This is happiness to me.

God in Israel sows the seeds
Of affliction, pain and toil:
These spring up and choke the weeds
Which would else o'erspread the soil:
Trials make the promise sweet,
Trials give new life to prayer;
Trials bring me to his feet,
Lay me low, and keep me there.

Did I meet no trials here,
No chastisement by the way,
Might I not with reason fear
I should prove a castaway?
Bastards may escape the rod,
Sunk in earthly vain delight:
But the true-born child of God
Must not, would not, if he might.

William Coper

2008-12-09T20:08:00.000-06:00

Trust in the LORD, and do good;
so shalt thou dwell in the land,
and verily thou shalt be fed.
Delight thyself also in the LORD;
and he shall give
thee the desires of thine heart.
Commit thy way unto the LORD;
trust also in him;
and he shall bring it to pass.
And he shall bring forth
thy righteousness as the light,
and thy judgment as the noonday.
Rest in the LORD,
and wait patiently for him:

Psalm 37:3-7a

Taking Care of You

2008-12-08T11:29:00.003-06:00

We live a “me” society. It is evident everywhere we turn. Ever been to an after Christmas sale? Have you ever driven in rush hour traffic? Ever asked for volunteers to help with a worthwhile project? It’s amazing how very selfish people can be.

Anytime you read about care giving, one of the major topics will be “Taking Care of You”. If you’re a Christian woman, you may be tempted to pass over those pages and go on to the next chapter, “Being the Best Caregiver You Can Be”. Well, I’m thinking that maybe someone should combine those two chapters! Learning to “take care of you” may very well lead to “being the best caregiver you can be”.

Now, while I must admit, despite some searching, I could not find any scriptures that read, Take care of you. But, I do know that the scriptures teach that we are to care for our own….our home, our family, our loved ones, and that we are to love others as we love ourselves. Here is a short list of scriptures that repeat that theme.

Leviticus 19:18 and 34
Matthew 19:19; 22:39
Luke 10:27
Romans 13:9
Galatians 5:14
James 2:8

Now, I’m not going to argue scriptures but I do know this, we must first care and love ourselves before we can care for and love others. People can and often do take things to extremes, including caring for self. This is not what I am talking about. I’m talking about caring for our own, personal needs, very real needs that each of us were given by God Himself.

Try seeing it through this word picture. Suppose you had a car that you used everyday. This vehicle was the one you used to do all your errands….grocery shopping, doctor visits, trips to the Post Office, getting to and from work and church. Now, what would happen if you failed to add gasoline, or if you failed to change the oil? You would very soon find yourself in big trouble. You would be stranded on the side of the road, out of gas and unable to accomplish everything on your “To Do” list. You wouldn’t be able to care for your home, your children, your husband. Don’t change the oil and even I, an auto novice, know that you will destroy your engine and will find yourself on the road to a major repair. We’re talking big bucks.

If we understand the importance of maintaining a vehicle, why can we not see the importance of maintaining ourselves? I mean, seriously, do you think that we can neglect our own needs and not find ourselves staring at a huge repair bill?

As caregivers, we neglect to care for our very basic needs. We feel it nobler to “wear out than to rust out”. We think if we take a moment to do something for ourselves, the world will self destruct. Doctors appointments, hair cuts, clothing shopping, these errands aren’t just fun, they are necessary. Taking time for peace and quiet, time for reflection and devotion, prayer and thanksgiving. We even need time for good, pure enjoyment.

For me, there were two obstacles to caring for myself. First, I found it extremely difficult to ask someone else to stay at home with my husband while I left the house. It’s difficult to ask for and to receive help. If my older children stayed at home with their dad, I felt as though I was shunning my responsibility to be there for my husband and at the same time robbing my children of doing the things that they wanted to do. Invariably, our schedules would collide and someone had to give. It was just easier for me to say, “Its ok, I can always do it next week.” I hated to ask friends because I felt that it wasn’t their responsibility, and I wasn’t going to pay someone! I mean, really. That’s just too much.

Secondly, if I am honest, I really didn’t care to be around people. Once you’ve shut yourself up from the world, it is difficult to emerge from your safe cocoon. I just “didn’t want to bother with it”.

That was a sure sign to me that I had a real problem. It was a sign that I had neglected myself for so long that I no longer wanted to be around the human race. Honestly, I felt like an outsider every where I went. I felt very alone.

If you have children, surely you remember the days when you just felt overwhelmed by the diapers, the meals, the laundry and the constant “why mama”? Remember those days of feeling like you just needed a break? Remember longing for nap time, so that you could have a few minutes to yourself?

I talked to girlfriends with small children and we all agreed, we needed a time out. We would call our mothers, our friends or if we had to, hired a babysitter. No one thought we were selfish, no one accused us of being wimps because we couldn’t handle life with a couple of kids. You know why? Because everyone has been there. Anyone with a child or two knows how vital it is to get away and renew.

I remember leaving my children with my mom. I knew she would care for them. I knew that though they cried and “missed me”, it wouldn’t kill them. Many times my husband and I left them with Grandma and just got away from it all, and spent some time alone. It was like a breath of fresh air. And, the return? Actually, we couldn’t wait to see the kids again. We loved them and yeah, we even missed them. I was a better mother to my children after those breaks.

Why do we think that things would be any different when it comes to caring for our loved ones? It can be overwhelming. Too much to do and not enough time or energy to do them well. We get worn out and need time to rejuvenate. Just as people with jobs have days off and vacations, we too, need to find some time off. A time when we can safely leave those we care for, even if just for short periods. A few hours here and there, and maybe even a trip alone.

I have begun to see that I need one day a week off. One day where I don’t have to account for every little thing I do. Some weeks, it might only get a half day, but I need it. I may get my hair cut, have a pedicure, stop by a bookstore, visit a quilt shop, even a trip to the Farmer’s Market….the only rule? No stressing. No worrying about making it here or there on time. No schedule. Just enjoy being me and doing the things I love.

There are things from your former life that you enjoyed. You know, your life BC….Before Caregiving. You loved reading, writing, quilting, painting, exercising, volunteering, camping, hiking, concerts, going to Bible studies. Try to remember….are there still some things that you say, “I wish I could…..”. Well, why can’t you? Find one thing and make a commitment to yourself that you are going to devote 2 hours a week to it. Find a way to work it into your schedule. Then MAKE IT WORK. Call someone, a friend, a relative, or if you have to, hire someone to sit with your loved one while you take the time to do something you love. You’ll be shocked at how refreshing, how rejuvenating it is.

Take an hour each week to spend alone, reading your Bible in a quiet place, write in a journal, pray, just reflect. When I talked with my counselor, she said it like this. We have external noise and internal noise. When your life is busy with caring for someone, when you live with people, when you have responsibility, that is external noise. The responsibility, the outside pressure to get things done. Internal noise comes from the stories that we play over and over in our mind. The story that I’m not doing a good job. That I’m not qualified. I can’t do it. It’s too hard. We need time to shut out the noise. We need time to read the scriptures and let them minister to our hearts, the Great Physician’s Salve. Medicine to an aching heart.

The place I chose as my place of quiet was a nearby park. Near water, under trees. As I sat and opened my Bible for the first time there all alone, I couldn’t even read. I cried. My heart was flooded with emotion. The park was not a particularly beautiful park, but just being outside under God’s creation was amazing. The trees, the birds, the sound of the water flooded my heart and I began to open up to the Lord in a way I hadn’t in a long time. I was only gone for one hour, but the medicine had begun its work. Each time I left the house, I felt a burden lift. As I arrived at the park, I knew that the Lord was going to meet me there and speak to me. The notes I took might not make a really great sermon, but the Lord was faithful to meet my needs. I had some revelations, some words from the Lord that only He and I will ever know.

I have also taken time alone, and spent a few days away. One time, I went to a Christian Encampment and rented a small apartment. I took my own food, my quilts, handwork, Bible, journal and enjoyed some time away. I spent three days and two nights. I slept as late as I wanted (which ended up being not as late as I thought I would sleep). I took walks, I read, and quilted. I just was……Some thought it was terrible. Maybe that was because they aren’t where I am. But, I need time to be by myself. I have become my own best companion. There was a time when I couldn’t imagine that much time in Solitary Confinement; I wanted to be with people. But now I relish any time I spend alone. If you aren’t a loner, try taking three or four girlfriends and renting a house in a pretty area and have a two day slumber party. Movies, nails, handwork, whatever you and your best friends enjoy. The point is, find what sounds fun to you and do it.

If all this sounds like too much, start with 30 minutes on the back porch, uninterrupted. Take a walk around the block. Go out and pull a few weeds and pour your heart out to your Father in heaven. Start with reaching out with all that is within you to the Great Physician and ask Him, no….beg, that He do a work in your heart. Oh Father, be near me, one moment at a time.

The Silversmith

2008-12-07T15:34:00.005-06:00

And he shall sit as a refiner

and purifier of silver:

and he shall purify the sons of Levi,
and purge them as gold and silver,
that they may offer unto the LORD
an offering in righteousness.
Malachi 3:3

A Sunday School class began studying this passage of scripture. One of the ladies belonging to the class offered to go to a silversmith and ask him to explain to her the process of refining silver so that the class would have a better understanding of the passage.

She made arrangements to meet the silversmith, but chose not to reveal the purpose of her trip to him. He agreed to show her the process. He put the silver over a fire and sat and watched it.

As he began working, she noticed that he never took his eyes off his work. She asked, “Do you have to watch it every second?

“Oh, yes,” he replied, “If you leave it on too long it will damage the silver. On the other hand, if you take it off too soon, it will not be purified.”

The woman could not help but to draw the parallel between the silversmith and God. God leaves us in the middle of trials for as long as he needs to leave us, and it is for our own good; to purify us.

The woman watched as the dross (impurities) would rise to the top of the silver, and the silversmith would skim it off and dispose of it.

Finally, the silversmith removed the silver from the fire. The woman asked the silversmith, "How do you know when the silver is refined and ready to be used."

“I know it is finished when I see my reflection in it!”

Author Unknown

2008-12-06T00:25:00.004-06:00

Therefore being justified by faith,
we have peace with God
through our Lord Jesus Christ:

By whom also we have access by faith
into this grace wherein we stand,
and rejoice in hope of the glory of God.
And not only so,
but we glory in tribulations also:
knowing that tribulation worketh patience;
And patience, experience;
and experience, hope:
And hope maketh not ashamed;
because the love of God
is shed abroad in our hearts
by the Holy Ghost
which is given unto us.

Romans 5:1-5

Definition: ADLs

2008-12-04T14:32:00.003-06:00

ADLs (activities of daily living): The things we normally do in daily living including any daily activity we perform for self-care (such as feeding ourselves, bathing, dressing, grooming), work, homemaking, and leisure. The ability or inability to perform ADLs can be used as a very practical measure of ability/disability in many disorders.

From MedicineNet.com

Finding Help

2008-12-04T12:13:00.003-06:00

I have shared in previous posts how I had struggled with getting help in my new role as caregiver. This post, I'd like to share some ideas on how to find the help you need.

First of all, realizing you need help is the first step. If your caregiving began because of an accident, you probably received some help right away. The change in your loved one was almost instantaneous, and you immediately found yourself shocked by all the new people, specialists, aides and equipment just to keep your loved one alive and comfortable. If your caregiving began because of an illness, you may have had an experience like mine.

In all honesty, several years before I became a full time caregiver, I was a helpmate to my husband. When he began showing signs of neurological symptoms, I started doing research. His diagnosis of Secondary Progressive Multiple Sclerosis came after he had already had 2 years of consistent and unusual symptoms (although he had 10 years of intermittent symptoms prior to that). They were symptoms that had already changed our lives. Once the diagnosis was finally made, there was no huge adjustment to my work load. We just continued along, me helping out when he was fatigued, running some errands so he could focus on work, etc. No big deal.

But, as his illness progressed, my work load became heavier and heavier. I'm sure you've heard of the frog that was placed in a pot of lukewarm water. Slowly the heat was increased until the frog found himself boiled to death. That's kind of how I describe my caregiving responsibilities. Increasing amounts of "aide" to my Dear Husband until one day, I woke up to a pot of boiling water. It's difficult to see the changes in our responsibilities because they happen so slowly. Some wise counselors once told me that if you are asking, "Is it time for help?" the answer is yes.

Next, a friend encouraged me to write down exactly what my responsibilities were. I was shocked when I kept a log for two days of exactly what I was doing. Each time I did something, I wrote it on a piece of paper. At the end of the first day, I had filled three sheets of notebook paper. I looked at it and thought, "I need a vacation." While none of the jobs were REALLY difficult, each little job on top of the other added up. It was like the straw that broke the camel's back. We’ll call it the Accumulation Factor. I found too, that I really didn't have time to keep a journal, I was too busy. THAT was an eye opener...I didn't even have time to make a journal.

As I looked at the list of things I did for my husband, I noticed they fell into a few categories. Here are my categories and some sample items in each.

1. Things I don't mind doing and/or love to do.

Preparing his meals and snacks and helping him eat

Rubbing his muscles to help with aches and stiffness

Visiting with him and being his companion

2. Things that can easily be delegated.

Getting him a glass of water, several times a day

Putting his socks on for him

Finding his hairbrush (how does it always disappear???)

3. Things I can't stand doing.

Bed baths

Haircuts

Then, of course there are other things that have to be done. Don't forget to add items like maintaining the car, banking, groceries, bill paying, cleaning, laundry....on and on.

Decide what kind of help you actually need. Do you need skilled nursing care, help with housework, a personal care aide, or family and friends to fill in the gaps? Skilled nursing care may be covered by insurance, Medicare, or Medicaid. I found that my children (those who were still home) were a valuable resource. Without overloading them, or abusing my role as parent to burden them down, I found they were able to handle some things and relieve some of the stress. We hired an aide to come to our home and give my husband a bath once a week, with me doing sponge baths between her visits, as needed. And when my mom moved in with us, she became an enormous help in areas of housework: laundry, dishes, dusting, etc.

Be bold and get the help you need. Now, take the list of responsibilities and decide who can do them. Family members, an aide, or maybe friends? Find the right person for the job.....Make a list of people to contact and put under their name the job you need them to do. I have found that friends and family will tell you, "Let me know if there is ever anything that we can do to help." Take them up on the offer. Next time they offer, ask them what they would like to help with. Or give them some ideas. Tell them that your gutters need cleaning, or that you have a leaky faucet.

You may need to contact your doctor and set up a visit from a Home Health Company to evaluate your loved one's needs. Some care may be covered. Or, you may find, as we did, that care is only offered long enough to train you. You may have to budget some finances to hire help yourself. Only you can decide whether it is best to hire an individual or to hire an aide through a Home Health Care company.

The point is this....you can get help, but it will cost you. Time, energy, thought, possibly money and sometimes it will force you out of your independence, and out of your comfort zone. But, help is necessary in this caregiving journey. No one can do it all alone for long, extended periods of time.

Most of the time when we begin caregiving, we can only think of what our loved one needs. And we love them so much we find it a joy to give of ourselves. But, we will find that we only have so much time, energy, money, and patience to carry on for extended periods of time.

Compare the two scenarios. Your healthy spouse wakes up one day with aches and pains, a cough and sniffle. You both realize very quickly that this is the flu. For two weeks, while he recovers you pamper, coddle and love. You prepare tempting meals and snacks, you rent all his favorite movies, you cancel all previous engagements and spend every moment meeting each and every need. Two weeks pass, your husband is well and you're exhausted. Yet, you feel great that you were able to care for him and did a great job of it too.

How many times has this happened and you've done it, you've passed the test? Anyone can. It's short term. Our game plan for a chronic illness cannot be the same as for a two week flu. The flu rules do not apply. We're in this for the long haul. We may be at this for years....and we must survive to the end. Other aspects of our lives will continue, regardless of what we must do to care for our spouse. Groceries still have to be purchased, food prepared, house cleaned, laundry, financial decisions made, etc. No one person can do the work that you and your spouse once did together.

So, please do what it takes to get the help you require. And don't dare feel bad about it. We want to have energy left to lavish love on our spouse and that can't happen if we do it all alone!

Boundaries

2008-12-03T02:09:00.006-06:00

Have you ever had a difficult time saying no? Have you felt pressured to do things that you really didn't have time to do, or didn't want to do?? Do you feel that you have to meet everyone's needs?? Here is a book that will help you work through deciding when to say yes and when to say no.

This book was a life changer for me. I've always wanted to make the people in my life happy. I have always felt an inner pressure to please. What I found happening in my own life was that I came to resent those I was serving. Through this book, I've learned to free my life up to do what the Lord calls me to do, instead of what I "should" do, what I "ought" to do and what "others expect".

Here is a brief synopsis:

Having clear boundaries is essential to a healthy, balanced lifestyle. A boundary is a personal property line that marks those things for which we are responsible. In other words, boundaries define who we are and who we are not. Boundaries impact all areas of our lives: Physical boundaries help us determine who may touch us, mental boundaries give us the freedom to have our own thoughts, emotional boundaries help us to deal with our own emotions and spiritual boundaries help us to distinguish God's will from our own.

Written by McCloud and Townsend

The Holidays

2008-11-30T11:11:00.003-06:00

Just so you know, this is no complaint....it's just reality. Things change when you have a ill spouse. They just do. If you are a caregiver, you've seen how what used to be and what is - are sometimes two very different things.

This year, Thanksgiving was a bit strange for us. My brother and his family weren't able to be here. They recently moved 1000 miles away and they just weren't able to juggle a long drive or an expensive plane trip here. My sister and her family were spending Thanksgiving with her hubby's parents this year. My daughter was still not well and slept ALL day. I only saw her twice, I think. Maybe just when I went in to her room to see if she was breathing and if she was running a fever.

So this year, we had two grandmas, both who have lost their husbands in the past 2-3 years, my hubby and I, our four children and our future daughter in law. A small group compared to Thanksgivings past.

Dear Hubby told me on Thanksgiving morning that he had a difficult time breathing the night before. The turkey was in the oven most of the night cooking and meat odors affect his breathing. That should have been a warning to me of how he would feel that day, but I went along blissfully unaware. As we sat down to eat dinner, Dear Hubby became weaker and weaker and finally asked to be fed the rest of his meal. As soon as he finished his last bite, he wanted to be put to bed. Dear Son helped get his dad into bed and we cleaned up the meal without his presence.

Mom left immediately after dinner to spend the rest of the day with her friend, Mrs. H, who is in the nursing home. My MIL stayed for a while and visited and then had to leave to spend time with her family, Dear Hubby's brother and uncle....who were both having meals at their house.

I visited with my two sons and future daughter in law for several hours. It was so unusual. Thanksgiving at our house in the past has been everyone stays, we sing, we play games, we drink coffee, we laugh and cut up and we have to MAKE PEOPLE LEAVE!!! No one wants to leave because we have such a wonderful time.

I suppose the reason that I am writing this is to remember. Maybe this is going to be the new normal for holidays, or maybe it was just a quirky situation. Maybe Christmas will be family and fun...but it is what it is.

Being a caregiver, we have to learn to roll with it and adapt. Adapting is easier for some than others....and let me say, practice makes perfect. The more we adapt, the more we are able to see that it really is ok. We have to learn to lower our expectations, or perhaps remove them altogether. The main thing is that we take what time we have a use it as best we can. That may mean we only get to spend time together at the dinner table this year....but who knows what next year will bring??? I am grateful that my children were home this year, even if one was sick all day. At least she was here.

The main thing to remember about holidays is this: relationships are what matter. Our health may change, our finances can be unstable, sometimes a dish is ruined, or bad weather strikes. What is important are our relationships with one another. As we sat at the table this year, it was wonderful knowing that we each loved each other. We accepted each other, and we treasured time together.

We don't know what the future holds, but we know that love is all that really matters. This year, did I love my family? Not for what they can do, because we know that changes. But for who they are? Yeah, it was a good Thanksgiving. After all, we do have much to be thankful for.

Happy Thanksgiving!!!

2008-11-26T12:09:00.003-06:00

Click on the picture to enlarge.

I was going to list things that I am grateful for, but there are just too many. I do sometimes focus on the hardships and difficult times, but I really do have much to be grateful for.

As we prepare to celebrate, I ask that you please pray for our older daughter. She has battled Scarlet Fever all week and is now coming down with bronchitis. Dear Hubby's back is getting better, but still hurts some. I'm rather tired myself, not getting as much sleep as I usually do and that can make for a churning mind and fearsome, worrisome thoughts. Please pray that I will keep my mind on Christ alone! Pray that I will keep a thankful heart!