Tuesday, May 3, 2011

Hoping to get out....

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. :)

Sunday, May 1, 2011

Windy day....

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.

Sunday, April 17, 2011

Staying busy....

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.

Thursday, April 7, 2011

...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.

Friday, April 1, 2011

You're gonna miss this

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.

Tuesday, March 29, 2011

Getting it all done.....

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.

Friday, March 25, 2011

"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

Wednesday, March 23, 2011

Grace and Peace

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.

Tuesday, March 22, 2011


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

Sunday, March 20, 2011

Emily Dickinson

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.

Friday, March 18, 2011

Keeping it in balance

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
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.

Friday, March 11, 2011

Subscribe and Save

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!

Monday, March 7, 2011

Too many sickies.....

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.

Sunday, March 6, 2011


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.

Friday, February 25, 2011

Misplaced guilt....

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?

Thursday, February 17, 2011


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......

Saturday, February 12, 2011

Still here

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.