Wednesday, December 31, 2008

Happy New Year!!!!!!!!

Have a wonderful
New Year Friends!!!!!

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

Sunday, December 28, 2008

Definition: Caregiver

n.
  1. An individual, such as a physician, nurse, or social worker, who assists in the identification, prevention, or treatment of an illness or disability.
  2. 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

Sometimes, a helping hand is the best gift.


AND


Love is always the perfect gift.

Saturday, December 27, 2008

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.

Wednesday, December 24, 2008

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.

Tuesday, December 23, 2008

Smile

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.

Monday, December 22, 2008

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

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.

Friday, December 19, 2008

Advice to Sufferers

"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

Tuesday, December 16, 2008

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

Saturday, December 13, 2008

I thought you were my friend.....

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.

Wednesday, December 10, 2008

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

Tuesday, December 9, 2008

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

Monday, December 8, 2008

Taking Care of You

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.

Sunday, December 7, 2008

The Silversmith

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


Saturday, December 6, 2008

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

Thursday, December 4, 2008

Definition: ADLs

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

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!

Wednesday, December 3, 2008

Boundaries

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

Sunday, November 30, 2008

The Holidays

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.

Wednesday, November 26, 2008

Happy Thanksgiving!!!

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!

Tuesday, November 25, 2008

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

Sunday, November 23, 2008

This too shall pass

I've heard this several times since my care giving began. People say it when trying to be encouraging. I began to ponder these words to see if they truly applied to my situation. I wondered where they came from. I knew they weren't scripture. Maybe it was quoted as such by some, thought to be found right beside "Cleanliness is next to godliness", but I was rather sure I'd never read it in the Bible.

So, I went to my great research tool, the internet and found this on Wikipedia.....

This too shall pass is a phrase occurring in a Jewish wisdom folktale involving King Solomon. The phrase is commonly engraved on silver rings. Many versions of the folktale have been recorded by the Israel Folklore Archive at the University of Haifa. Heda Jason recorded this version told by David Franko from Turkey.

"King Solomon once searched for a cure against depression. He assembled his wise men together. They meditated for a long time and gave him the following advice: Make yourself a ring and have thereon engraved the words "This too shall pass". The King carried out the advice. He had the ring made and wore it constantly. Every time he felt sad and depressed, he looked at the ring, whereon his mood would change and he would feel cheerful."


Wow, interesting way to deal with difficult situations, don't you think? Yet, what would happen if you were to look at the ring when you were feeling happy, when all was right with the world? Ah.....then you would become depressed because you would read, "this too shall pass" and would understand that happiness is fleeting.

I've been thinking about "this too shall pass". The thought spoken right after someone says, "this too shall pass" is usually, something to this effect: "don't be discouraged, this is only temporary". Well, exploring this further lead me to think some more.

I thought of difficult times in my past. Difficult pregnancies, the flu, babies in diapers, sleepless nights from crying children, car trouble.....These are what I call transitory, short lived and temporary. The pregnancy does eventually end....sometimes well, sometimes sadly. I've gotten over the flu. My children no longer wear diapers, although, with some we wondered if they would wear them for the rest of their lives! My babies learned to sleep through the night....eventually. And, the cars, at some point get fixed or replaced.

Applied to my situation, is this difficult time I am going through just temporary? I then thought of others that I know who are going through difficult times. Are their circumstances temporary? Let me think: cancer, brain tumors, death of a spouse, MS, Brain Injury, Alzheimer's, Paraplegia, etc. Hm....would I consider these trials and difficult times to be temporary? Not hardly. They last a lifetime.

MS is the one that touches me personally. My Dear Hubby, apart from intervention of the Lord, will ALWAYS suffer from MS. He will not be able to walk again. As a matter of fact, the things that he is able to do today, he will mostly likely not be able to do in the future.


Depressing? Sure....but, where do we turn when we realize that for some of us, this will not pass. It's not going to go away. With MS, a person's life expectancy is rarely affected, and if it is, it's usually by just a few years. Cancer is no longer a deadly disease that takes all it's victims. With new treatments, cancer has almost become a chronic illness. Brain Injuries do not heal themselves and loved ones do not return from the dead. Alzheimer's patients do not wake one day to have their minds restored.

I suppose many would say, "But, Paula, compared to eternity, this IS temporary." My answer, "Compared to eternity?" Sure....compare anything to eternity, and you find yourself in temporary situations. But, honestly, 5 years on earth is a long time. 10 years, 20, how about 40? Wow, it's a long time for some of us. We've had a diagnosis since 2000. Certainly not temporary.

So, if Jewish folktales about King Solomon can't give us the answer to dealing with difficult situations, what can? How about the Holy Scriptures?

Yeah, let's start there. And end there.

If I were to look at a Biblical example of a man who was able to endure trials....trials that weren't transitory, trials that lasted from the moment he gave his heart to Christ to the time of his death, I would have to turn to Paul.

Start by reading Acts 22:6. Paul dealt with thorn in the flesh to start with from his Damascus Road experience. He asked the Lord three times to remove it and the Lord said no. (II Corinthians 12:7-9) He carried this thorn, regardless of what it was, for the rest of his life. Temporary? Nah.....


II Corinthians 11:24-28 tells about the other things that Paul struggled with in his life. Maybe they were transitory, but let me tell you.....one transitory thing piled on the other leads me to call Paul's experience "Chronic Trials"!!!

Beaten with rods, stoned, three times shipwrecked, in many journeys, water, attacked by robbers, persecuted by his countrymen, and the heathen. In
danger in the city (I can relate), in danger in the country. Wilderness, the sea, dealing with false teachers, weary, in pain, hunger, thirst, fastings, cold and naked, and finally the care of the body (the church) falling upon his shoulders. This man really suffered. And, these weren't just small, short term items here. Compare my list to his, and all I can say is: My life is a cake walk.

One day, several years ago, I was reading through the book of II Corinthians and came across a passage of scripture that just about knocked me down. I read it and couldn't believe it.

II Corinithians 4:16-18

For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.

Amazing at the depth of Paul's understanding.

I always like to read the verses before, to get an idea of what is being discussed. Do this in this chapter and you'll find more amazing stuff.

Starting in verse 8: "We are troubled on every side, yet not distressed; we are perplexed, but not in despair; Persecuted, but not forsaken; cast down, but not destroyed; Always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. For we which live are alway delivered unto death for Jesus' sake, that the life also of Jesus might be made manifest in our mortal flesh. So then death worketh in us, but life in you. We having the same spirit of faith, according as it is written, I believed, and therefore have I spoken; we also believe, and therefore speak; Knowing that he which raised up the Lord Jesus shall raise up us also by Jesus, and shall present us with you. For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God. For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal."

Ok, so this too shall pass? Maybe, maybe not. It just depends on our perspective. Whether our trial is short lived or lasts a lifetime, there are lessons to be learned. While we experience difficult times and go through horrible situations, though we hurt, cry, and think we can't take another step....if we let these things in, and in turn let the Lord use them we will find that our inward man CAN be renewed, day by day.

Joseph spent time in the pit, he went through the hate of family, was sold into slavery, and lied about, but all the time, God was working. He could not see the hand of God, but He was there, seeing, knowing and allowing these things.

I don't always like what the Lord chooses to do in my life....but I am learning, day by day to trust Him. I don't know that I will ever ascend to the throne, like Joseph did at the end of his story. I don't know that I will ever lead a nation to safety. I don't think millions of lives will be affected by my life. But as my Pastor says, "I'm just one beggar telling another beggar where to find bread."

We have to believe God. My childhood Pastor told me once: God is too loving to be unkind, too good to do wrong, too wise to make mistakes, too great to be petty, spiteful, small or mean; above all, too powerful to be thwarted.

I must have faith that He is working in my life. I may have to go through the pit, the rejection, the loneliness, the trial.....but the other side, which WILL come, will bring with it the eternal weight of glory. God is NOT finished with me yet, of that I am sure. I choose today to trust HIM, whether this passes or not.

Finally, let me end this with another great scripture written in Philippians 1:12, "But I would that ye should understand, brethren, that the things which happened unto me have fallen out rather unto the furtherance of the gospel;"

I want the difficulty God allows in my life to be used by Him to spread His Word. His Word of salvation and His Word of hope.

II Corinthians 12:9b
"Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
Come unto me, all ye that labour
and are heavy laden,
and I will give you rest.

Take my yoke upon you,
and learn of me;
for I am meek and lowly in heart:

and ye shall find rest
unto your souls.

For my yoke is easy,
and my burden is light.



Matthew 11:28-30

Saturday, November 22, 2008

Definition: Chronic Illness

Chronic Illness is defined as long-term or permanent illness that often results in some type of disability and which may require a person to seek help with various activities. A long-standing illness for which there is no known cure. It is not immediately life-threatening but can give rise to unpleasant and painful symptoms.

The Caregiver's Report Card

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.
Colossians 3:24


There are times when we can feel so overwhelmed in our role as caregiver. The frustrations, the interruptions and the confusion can lead us to some real hair pulling. I think what is most difficult for "outsiders" to see and understand is that we are not frustrated at the person. We are not mad at the one we care for. It is the constancy of need. The increasing work and tiring days and nights.


My husband is not usually in pain. His legs sometimes ache at night, but he's not a complainer and a lot of times, I never know that he's been awake for hours, hurting, until the next morning. Having my Dear Hubby in bed moaning and hurting, has been difficult for me to watch these past few days.

As he has called my name, I have felt true compassion for him. I know he is hurting and I want to make him comfortable. While there may be nothing to ease his pain at that moment, I can know that I am meeting a need as best as I can.

We may not be able to take away their pain and discomfort. We may not be able to adjust them in the hospital bed and get it just right. We may walk away from them, knowing that they have not had their need met just perfectly, but we can rest assured that if we have done our best, then that is all that really matters.

I remember as a child, coming home with my report card. In elementary school and most of Jr. High, I really didn't do well in school. I don't know what the reason was, maybe I was just a late bloomer. I was discouraged by one particular report card, and was really dreading showing it to my mom. As I handed it to her, I hung my head. She read over it and asked me what had happened. Like most kids, I just kind of shrugged my shoulders and said, "I don't know." She asked me if I had done my best at school. I thought it over and while I did think of some work that I could have done better, overall, I really had tried and had done my best.

She looked me in the eyes and said, "All I expect from you is that you do your best. If this is the best you can do, then I am proud of you." What gives a mother wisdom like that? An intuition and direction from the Lord? I felt a renewed sense of pride. While that may sound a bit naive.....I was satisfied with my best. I would never be as smart as my brother, but I had learned to try. And I had learned to accept my limitations.

You must understand what happened to me during that next semester. I tried really hard. My mom expected my best. She would be satisfied with my best, regardless of how I compared to others. I did bring my grades up just a bit, but I never did have a report card with mostly A's and some B's until high school.

I've thought about this same idea when it comes to my life of serving my husband in his time of chronic illness. Am I doing my best? I mean, what are my goals in caregiving? Is it that my husband will always be comfortable? That I will run when he calls my name? That I will meet each challenge with a smile on my face?

No, my goal will be to do my best. If I look back over my caregiving, I see times where I felt like such a looser. I had a bad attitude, I grumbled and complained, and whined a bit. Was I the perfect caregiver? Did I have a great attitude? Did I do my best?

Well, maybe it's kinda like me and the report card.....maybe there were some areas where I could have tried harder and done a better job, but honestly, at the time, I really did do my best. It's hard to be giving when you are drained emotionally, physically and mentally.

I can't go back and change those report cards, but I can know this: My heavenly Father looks at me with eyes of understanding, deeper than any mother could possibly have. He made me. He knows me.

Psalm 103:13 and 14 says, "Like as a father pitieth his children, so the LORD pitieth them that fear him. For he knoweth our frame; he remembereth that we are dust."

Paula's Paraphrase: But as a father loves deeply, has tender affection and compassion on his child, so our Father in Heaven loves, has tender affection and compassion on His children...those who reverence Him. He knows and perceives our purpose, our form, who we are; He remembers that we are just dry earth, dust and ashes. He understands my weaknesses and limitations.

If I could have done better at the time, I probably would have. That's what I remind myself of. As a caregiver we are growing and changing. We are learning and adjusting. There have been times when I have thrown my hands up in the air in frustration, but I'm not going to go back there and relive those times. I'm going to go back to my role as caregiver and do the best that I can today.

I'm so grateful that it is the Lord I must answer to. I've been bought by the blood of Christ and that is what my Father sees. Sure, I have to deal with my shortcomings, my anger, my hurt feelings for what they really are: sin. But the past can be forgiven, it already is....it's under the blood. And, today, I can face my Father in Heaven and say, "Here is my report card on caregiving. I've done the best I can. And by your grace, tomorrow, I will trust You to work in my life and help me to do a bit better."

In the classroom of caregiving, there is no comparing. We can't look around and say, "He or she is doing so much better than I am." Our Father sees us individually and deals with us individually. Rest in His hands, and remember, He is your Father who loves deeply and has compassions that do not fail.

Friday, November 21, 2008

What Lies Around the Corner?


No one really knows.....

We are up really late most nights. Dear Hubby likes to watch Fox News and old black and white movies. He has a difficult time getting to sleep at times. Wednesday night, while trying to get comfortable in bed, he pulled a muscle in his back. Yep. He did.

He has trouble with spasticity (definition below) because of his Multiple Sclerosis. Needing to bend his legs, but having them refuse, he has to pull hard on the leg lifters I made for him. He is so sweet to try not to wake me at night and do this himself. But, sometimes he can't. Well, Wednesday night, while trying to pull those legs up, he injured his back.

It hurt all day Thursday, but he just dealt with it. He's always had a very high tolerance for pain, but since his diagnosis, he has a much lessened ability to tolerate pain and discomfort. We were up really late last night, but he was so uncomfortable he woke me very early this morning to rub his back with BioFreeze and then we went back to sleep for few hours.

By mid morning he was really suffering. Taking a deep breath hurt his back and he even felt it in his stomach. After calling the Dr. this morning and waiting for her to return the call after lunch, we decided to just make an appt. this afternoon and try to get in before the weekend hit. Trouble worsens at night and on weekends, have you noticed???? And anything left untreated usually doesn't heal itself.

I am so grateful that Dear Older Daughter and Dear Younger Son were still home before leaving to go to a friend's birthday celebration. Dear Older Son went with us to the Dr. and packed up the LARGE power chair and lifted his dad in and out of the van. Whew!! What would we do without him???

So now, we have discussed pain medication and Dear Hubby has relented and is taking some. And the Dr. has prescribed Baclofen to help with the spasms and rigidity. So, maybe if he continues taking it as prescribed, he can prevent more pulled muscles. Even I have had a sore muscle or two at times when trying to move those stubborn legs!

Like all caregivers, I'm learning to roll with the punches and just go with it. I'm always amazed at the way things seem to fall into place. Normally, this is my week to be gone quilting all day....and the two older kids were planning on leaving a bit earlier, but didn't. Hm.....maybe the Lord was working???? LOL


From Wikipedia: Spasticity or muscular hypertonicity is a disorder of the central nervous system (CNS) in which certain muscles continually receive a message to tighten and contract. The nerves leading to those muscles, being damaged and unable to regulate themselves (which would provide for normal muscle tone), permanently and continually "over-fire" these commands to tighten and contract. This causes stiffness or tightness of the muscles and may interfere with gait, movement, and speech. Spasticity is most common in spastic diplegia and in other forms of spastic cerebral palsy, but it also presents extensively in multiple sclerosis and to different degrees in most other neuromuscular diseases and conditions as well, both progressive and not.

Tis the Set of the Sail



by Ella Wheeler Wilcox 1916

But to every mind there openeth,
A way, and way, and away,
A high soul climbs the highway,
And the low soul gropes the low,
And in between on the misty flats,
The rest drift to and fro.

But to every man there openeth,
A high way and a low,
And every mind decideth,
The way his soul shall go.

One ship sails East,
And another West,
By the self-same winds that blow,
'Tis the set of the sails
And not the gales,
That tells the way we go.

Like the winds of the sea
Are the waves of time,
As we journey along through life,
'Tis the set of the soul,
That determines the goal,
And not the calm or the strife.



Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
Philippians 4:6

The Job I Never Applied For


If you are a family caregiver, it’s probably not a job you applied for. Many of us find ourselves thrust into this job after a diagnosis or an accident. Maybe we were first choice and maybe we were the last resort. Nevertheless, here we are.

Were we prepared? Probably not. Do we feel qualified? Most of us don’t.

I’ve been a full time spousal caregiver since March 2003. And, honestly, it was a job I never dreamed I’d have at age 38. I really thought I’d being doing something else with my life. Seeing my kids into their teenage years. Completing our homeschooling of the older children and participating in school activities. Taking family vacations. Enjoying hobbies...but caring for my spouse full time? No way.

As I found my role as caregiver increasing and other roles shrinking (because of lack of time and energy), I admit it, I panicked. I didn’t know what I was doing. I was lifting, transferring, doing stretching exercises with my husband, bathing, and a lot of cleaning up after accidents….of all sorts. And, I had no clue if I was “doing it right”. I was burning out. I was tired and every day I battled feeling inadequate. I didn’t always like my job. I got frustrated. I worried, I cried. I fell apart in front of friends. I shared my heart with some and then regretted that I couldn’t just “get it together and handle things myself”.

As I entered my fourth year, I realized that something had to give. Sure, my kids were a great help. They picked up the slack in areas like laundry, housework, trips to the grocery store, etc. But overseeing everything was my job. Being in charge of the house and taking care of my husband was my job. My role was changing. The job I once had, wife and mother, seemed simple. This new one? Overwhelming.

Finally, one day, after many tears and weeks of self doubt, I did it. I cried out for help. I talked with my husband and told him I didn’t think I would make it to the end if I didn’t do something. I had some ideas, but honestly, in my world…..there weren’t a lot of options.

You see, I thought that if something came into my life, I should be able to handle it. The Lord never gives more than you can bear. Scripture tells us in I Corinthians 10:13, “There hath no temptation (trial or proving) taken you but such as is common to man: but God is faithful (trustworthy and can be relied on), who will not suffer (allow) you to be tempted (tested and tried) above that ye are able; but will with the temptation (trial) also make a way to escape, that ye may be able to bear (to bear patiently and endure) it.” As we have trials, our strength increases. And yet, I wasn’t feeling it. And I wasn’t coping well. I was a failure, not only as a caregiver, but as a Christian woman.

I felt like I had lost my compass. I still read the scriptures…periodically. I prayed, often…almost continually, crying out to the Lord for help and even relief from my burden. But, instead, I felt just more and more pressure heaped upon me. So, I sought help.

First, I met with a counselor. I found a woman who understood and agreed with my Biblical World View. I sat down and explained all I had been through, a recent miscarriage, changes in my role as wife and the burden of caring for my chronically ill husband, as well as other extended family issues that were burdening me down. As she listened, I could tell she understood.

As I opened my heart and shared where I was, and the things I was dealing with, I told her that I could no longer see truth. You see, being under the burden of my responsibilities, I could no longer see what truth was and what was a lie. I had expectations of myself, and I was falling short. I was mad at myself for not handling things right. I was struggling with what Ideal Me would do in this situation and what Real Me was actually doing.

You know, Ideal Me was patient. Real Me got frustrated easily. Ideal Me could handle anything thrown at me, Real Me had limited resources of time, money and energy. Ideal Me walked in peace, Real Me couldn’t find a moment’s peace. The counselor was able to help me work through some things in my life and helped put my life back into proper perspective. She helped me to see that I could not do this alone. She showed me that Ideal Me was just an ideal and that I could never reach the expectations I set upon my own life. Real Me is the person that my family and friends knew and even loved.

Secondly, the day came when I had to talk with my husband. I shared my heart and told him that I needed help. We worked through it and I called our family Dr. We set up an appointment to have a Home Health Care company come out and give me some instruction in caring for a chronically ill/disabled person. We were given a hospital bed, a lift, a new beside commode, and some other helps. I was amazed at how just a few changes made such an enormous difference. Contrary to popular belief, Medicare does not cover long term care of chronic illness. This was to be a time of training and help would be very short term.

As my husband and I discussed his care, I realized that there were some jobs I just couldn’t stand doing. I also found that some of my methods were time consuming and energy zappers. No wonder I was so exhausted. I was wearing myself out needlessly. There were easier, better ways to do the things that had to be done. And watching the “professionals” work made me realize that I did need help. We decided that there were a few jobs that I could delegate and even pay someone else to do.

The Lord doesn’t give us more than we can bear, but why do we think that means we must bear those burdens alone? Galatians 6:2 tells us to “Bear ye one another's burdens, and so fulfil the law of Christ.” We are to help those around us who find their burdens too large to carry on their own. I believed those scriptures, but I always thought my responsibility would be to help bear a burden of a fellow Christian. Instead, at this time in my life, I found myself on the receiving end. I was the one who needed help in bearing my burden. I just had to ask for the help I needed.

So, maybe we weren’t prepared for this job. Maybe we’re in over our heads. Maybe the job is too big. But, we have options. We just have to be creative and look outside of ourselves to find it.

If I were to talk with a caregiver face to face, this is what I would say. It’s a tough job that few of us applied for. We don’t have the all the skills, experience, and training needed to do our jobs. So what are we going to do? Crater? Cry? Give up? If we do, who will care for our loved ones? I did that for several years. Let me tell you right now, it doesn’t accomplish anything….you’ll still find yourself right where you are. Instead, don’t be afraid to ask for the help you need.

I guess I see it this way. Laundry is a big task. But, imagine how much bigger a task it would be if you had to do it alone, without a washing machine and dryer, without an iron. The task would be almost unbearable. But, we have help. We have washing machines that pour water over our clothes, agitate, wash, rinse and remove excess water. We have dryers that tumble our clothes while heating them causing the water to evaporate. And when those tasks are done, we can iron our clothes, getting them nice and smooth, ready to be used. Are you cheating by having these items to make your life easier? Are you less of a woman or housekeeper? Or are you working smarter? Are you saving yourself time and energy so that you can focus on the important things in life?

Let’s get the help we need to do the job we never applied for. Sure, the task is difficult, sometimes overwhelming, but with the help of equipment, aides, friends and family, we can get the job done, and still have some energy left to love the one we care for. What can be more important? And maybe, just maybe, we’ll find a little time for ourselves in the process.