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Could MS Be a Blessing?

Posted on mscaregiverdonna on July 17, 2011 

First off let me say that I would not wish MS on anyone.  Nor do I believe that God gives people MS either as a blessing or a curse; MS, like all diseases, is a consequence of a fallen world and Adam and Eve’s free choice to disobey God.  That said, I believe God can use the hard times in our lives to strengthen and bless us.

I must admit that I don’t particularly appreciate it when someone tells me that “God doesn’t give us anything we can’t handle.”  Most of the time, I want to respond that His idea of what I can handle and mine are world’s apart, but I have to admit that for the most part, that saying is true.  Or maybe it’s not.  What I have found is that God doesn’t expect me to handle it alone. 

I’m someone who wants to be in total control of my life.  I don’t like the unexpected.  I plan everything.  I do not leave things to the last minute just in case something might come up.  I like to know what’s happening and I want to have closure.  One of the hardest things for me to learn as my caregiving requirements have increased is how to handle not being in control.  I’ve had to learn to trust God.  I’ve had to learn that I cannot do everything myself.  I have to acknowledge that I am not superwoman, and I need help.  It’s through all that I’ve had to learn that I have realized my greatest blessings.

When Lynn and I got married, we both loved the churches we belonged to before marriage, so we decided rather than either of us give up our church home, we would find another one.  We looked around but felt the most at home at Gethsemane Church of Christ in Mechanicsville.  We both liked to sing, and I wanted to act.  Lynn was a very talented tenor, and I was a passable alto, so we joined the choir.  Through that, we became part of the cast annually for a Christmas dinner theater. We also joined the handbell choir, and Lynn became the drummer for the church praise band.  I helped with the start-up of a support group called Discover Freedom (the group was initially started to support people with addictions but was soon found to help people with all types of needs).  I also helped create a drama team and helped both write and present many of the scripts. We were at church 4 out of seven days and loved it.  We made so many friends and received so many blessings from participation. 

Then Lynn started getting weaker.  First, he had to drop out of the choir.  His fatigue was too much to allow him to sing or to stand and perform.  Then he had trouble holding the drum sticks plus his legs got too stiff to drive safely, so he had to drop out of both the worship band and bells.  I continued participating for a while until one day he fell while I was not at home and had to lie on the floor for three hours before I could get back to help him up.  The trauma of that experience and the fact he became very overheated and dehydrated lying next to the heat register caused him to become very weak.  I ended up having to work more from home.  He had to stop going to church and eventually so did I so I could stay home to help him.  We missed the fellowship from church and the opportunity to worship with our church family.  

When we stopped going, it would have been easy for the church to forget us, but they didn’t. We get cards and phone calls all the time.  The entire choir came last Christmas to sing Christmas carols.  The church collected money, and one of the members built a beautiful wheelchair ramp for us.  Between Thanksgiving and Christmas, Lynn was continuously in the hospital.  A group came over to our house and decorated both inside and out so we would come home to Christmas cheer.  While at our house they saw our refrigerator was almost worn out and they brought in a second-hand one that was in much better condition than ours. A few months later, they collected money to put in a handicap shower, and two of the members installed it.  Another group came by in the spring and helped remove several broken down things in our yard. One of the members is cooking our meals, and several are donating money to her to do so.  Someone else is baking us bread every week, and another one is helping Lynn with reviewing the books he is writing.  The blessings of this group are overwhelming!  We are so taken care of and so loved that even though we are not able to do as much as we used to, all we have to do is mention something to someone and the next thing we know, it’s done.

Then there is also the blessings of my job.  My supervisor is a wonderful caring woman who has supported my need to work from home.  She has approved me to have computer equipment set up so that I can work whatever hours I can so I can care for Lynn and still meet the demands of my job.  My team is fantastic as well–doing whatever I need to help me get information and keep up with things at work. My coworkers often offer their support and encouragement, and they’ve been known to send me extra help like getting carpets shampooed and delivering meals.

Our children are always doing things for us and helping us out. Our parents and siblings do the same.  So as you can see, we have had a blessing upon blessing.  Though God hasn’t chosen to remove Lynn’s MS, He has given us so much instead, and when I can’t do things myself, He sends someone along to help me/us out.   

I hope you have a church home.  If not, I encourage you to find a church like ours–one that lives their faith and puts into practice what Jesus taught to love your neighbors as yourself.  God’s blessing can be more than you ever imagined.

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The Many Faces of Care

As a caregiver, I understand that my role involves providing a lot of physical care.  For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring. For me, the physical demands are many because Lynn’s physical limitations are many. But, in addition to providing his physical care, I also need to provide mental, emotional, spiritual, and social care.  The physical care is pretty consistent in that I know in advance what I’m going to need to do for him and how to do it; however those other “care” needs are more unpredictable.
Mental and Emotional Care
We’re pretty lucky in that so far Lynn’s MS has not affected him mentally in any significant way.  He has had periods of depression and is in fact, on an anti-depressant to address that problem.  When he first became depressed, I didn’t catch on right away to what was happening.  I expected him to be down; after all, he had gone from being a very physically active independent person to someone totally dependent on others to provide for his every need. He had a right to feel frustrated, angry, discouraged, afraid, sad, and any number of other emotions.  Plus, he just felt bad. Since he had so many legitimate emotions that were healthy and normal for anyone going through what he had to endure, I didn’t catch on to the fact that his level of depression was growing deeper and deeper. When I did finally catch on was when he started making statements such as, “Why bother (to exercise); it’s pointless anyway.”  “What am I any good for anyway?  All I am is a burden.” He also stopped eating, stopped being interested in any decision making and seemed totally disengage from his life. Suddenly, I had that “ah, ha” moment and got in touch with his healthcare provider to get medication to help.  Fortunately, it did.  For the most part now, he manages depression pretty well and doesn’t go into long periods of being down, but it’s something I look for all the time.
In addition to depression, he has a little forgetfulness but he’s lucky; he doesn’t really experience the memory issues that many with MS battle every day.  He occasionally needs a reminder but most of the time the memories come back with a little prompting.
Spiritual Care
I believe that we are spiritual beings.  I know that, for Lynn and me, we count a lot on God for meetings our needs.  We look to our Lord and Savior to carry us through a crisis and to look out for our needs.  Our spiritual side is what keeps us going, what provides our comfort, and is often what restores our hope. Therefore, it is essential that I factor in that he needs spiritual care as well as physical care.  When there are no viruses or other contagious bugs in the air, he goes to church; however, during the winter months, that’s too risky…too much flu and other nasty bugs to be shared.  Therefore, it takes more effort to maintain the spiritual side of life.  Lynn has CDs that he listens to which bring God’s word to his mind and helps him stay connected to his faith.  In addition, he listens on line to the actual sermon presented at our church.  We also have many discussions about our interpretations of God’s word and how Jesus’ teachings affect our lives. It’s a very important part of his care to help him meet his spiritual needs and is why I feel he has been able to avoid greater bouts of depression.
Continue reading at: http://multiplesclerosis.net/caregiver/many-faces-of-care/

Hold My Hand

Dear Lord,
I don’t know why you do the things that you do
or why you let happen the things that you choose.
I’ve often doubted your wisdom and resented your ways;
not willing to accept what I was facing that day.
Like when I was a young and my friends turned away,
I was sad and alone and tempted to stray
but you taught me the value if I would obey
and brought me a new friend I have to this day.
I went on through school and a nurse I became
my dreams of my childhood were just not the same
I landed a job that allowed me to grow
in ways that prepared me for what I must know.
The trials of a marriage destined not to succeed
taught me reliance on faith for my everyday needs.
Single parenting was hard and many failures I see
Looking back at my choices and need to be me.
But God was right there standing close by my side
keeping me going and being my guide.
A special needs child and another too free
some hard times, some good times, some just meant to be
Though hardships were many and challenges not few
to loving and caring adults they both grew.
My spouse I did meet through your influence as well
A personal ad I did answer, do tell.
We married but struggled in our attempt to unite
our children and habits and expectations weren’t right.
I prayed we’d find closeness and a true family become
But try as we might that “oneness” didn’t come.
Then much to our sadness MS found its way
into the dynamics of family each day
I asked many times “why us?” and I prayed
for a miracle or something to take it away.
But in your wisdom this hardship worked out to our good
We’re closer and happier than we thought that we could.
So thank you, Lord Jesus, though I don’t understand
I’ll trust you and turn to you, just keep holding my hand.
Amen

Thus the Week Before Christmas

Thus the week before Christmas and all through the house
Not a creature was stirring not even my spouse
A small Christmas tree had been placed on a stand
So he could “see” Christmas from his power wheelchair
The last of our children this past year had been wed
So most of my parenting worries I’d shed
While Lynn takes a nap, I put on many hats
I cook and I clean and on my keyboard I tap
When out of the quiet, I hear Lynn start to chatter
I listen intently wondering what’s the matter?
“Hey Sweetie,” he calls, “can you come get this trash?”
Now what is he doing? I muse as I dash.
The room as I enter looks peaceful and glows
With the lights from the tree and the wreath’s bright red bow
When what to my wandering gaze should appear
But his hand inching forward and heading straight to the gear
With a fear of disaster, I step over a split drink
Knowing in a moment he’d cross the room in a blink
More rapid than careful toward the joystick I aim
As he questioned my purpose and asked me my name.
Waking up a bit more, he asked, “What’s that you’re fixin?”
I give him my answer and head back to the kitchen.
In less than ten minutes once again he does call,
A deep sigh I do make and turn back toward the hall.
As I care for his needs and my hands I do dry,
I think of our blessings and tears of joy I do cry
I admit that at times my thoughts are quite blue
But I know in my heart that our faith is our glue
When I fear we won’t make it, I see I have proof
That our Lord is providing with His Word as the root.
His promises have power; His love does abound
His voice is a whisper, it makes not a sound.
Through Christmas He gave us the hope of new life
In His wisdom He gave me to Lynn as his wife
With God’s grace and Lynn’s love, there is nothing I lack
Through my service to both, a small portion I give back.
As I settle back into my chores for the night,
I pray for endurance, understanding and insight.
With a smile I keep going, there’s more to get done
But Christmas is here and we’ve been saved by the Son.
Merry Christmas!

English: Nativity scenes in Sanok
(Photo credit: Wikipedia)

Adjusting to Disappointment

I had a serious disappointment tonight when I got home from work. Not about Lynn but something work related.
Once a week I go to the job site where I touch base with my staff and take care of a few meetings that I feel need to be done with “face time” rather than over the phone.  On those days when I get home, I catch up with emails that I can’t really address while on site. As I was reading my emails tonight, I got a denial on a request I had made.  It was something that I had expected to get an affirmative response on and the denial came as a shock.  Obviously I can’t go into what this was about because it’s confidential but what I want to share is how it brought up all the fears again that what I’m doing–being both a full-time caregiver and a full-time employee–is negatively perceived by others.
The reality is that the rejection I received was not directly about me but it was something that impacts me indirectly–a lot.  I can tell myself intellectually that this “no” was not about the value others place on what I do.  But emotionally, what I hear myself saying is that what I do is not as important to my organization as I thought it was…and that’s hard to accept. I work SOOOOO hard to do a good job.  Thinking that those efforts are not appreciated hurts me to my core.
What has this got to do with caregiving you say?  Here’s how I link it in my mind.
…I think that I’m very good at what I do.  I believe that my staff and I actually save the company a lot of unwanted pain and suffering through the interventions we do. However, what we do is intangible. We don’t bring in any income.  We do “prevention” work so there is no tangible return-on-investment.  We “know” that if we did not step in to resolve many of the issues we get involved in that it would likely impact staff turnover and possibly there might be more complaints that have to be addressed both from internal and external sources.  However, you can’t prove the cost savings with prevention. So, many people feel what we do is an “extra” and therefore, non-essential.
That’s where my fear comes in.  What if the message I’m receiving by this rejection is actually that we are not needed?  What if this is the first step to them saying that others could do what we do in time so we are not needed?  That thought is too terrifying, so I’m not going there right now.
On the flip side…
My first response when I got the rejection was anger followed by depression and tears.  I was really hurt. It also made me feel unappreciated and undervalued.  Maybe I’m too sensitive which could certainly be true being that I only slept 5 1/2 hours last night.
Then I start thinking that if that is how they feel about what we do, maybe I should go somewhere else where I might be appreciated.  That’s where the brick wall comes in.  The reality is that I can’t go anywhere else no matter whether I’m appreciated or not.  I’ve worked here over twenty years.  I’ve worked my way up in the organization.  If I went somewhere else, I would be starting over.  I only have a bachelor’s degree. To make what I make now somewhere else, I really would need a master’s degree for my application to even be considered (their loss if they didn’t consider it though).  There is absolutely no way I could work on getting my masters degree.  I can’t commit the time or the money toward that pursuit.  So I’m stuck.
If I was not a caregiver, I would go back to school in a heart beat.  I love to learn and though it would be a challenge at my age, I’m sure I would enjoy the experience. But I already fit in 30 hours into a 24 hour day.  I can’t get to the store that is five minutes away to buy groceries without major planning and rushing through to get back. How could I sit through a three-hour class, even on-line, and be able to get anything out of it?  I couldn’t.  I had thought about getting my certification by doing self-study.  Then the day after I decided to do that, I had one of those thirty hour days where every twenty minutes I was called to do 15 minutes of caregiving and gave up THAT idea.
My reality is…I’m a caregiver first.  Then I’m an employee.  I need this job to be able to give us a place to live, insurance to pay the medical bills, and access to all the other things I need in life.  I can’t “give” to my job like I once did.  Where before I was exceptional and I amazed people at how much I could get done; now I do a good job, even a great job at times, but I can’t do an amazing job any more.  I just don’t have that option.  Now, I do the very best I can with everything I do and often don’t feel like I do anything well enough.  Some days that’s true; everything suffers.  Other days, I shine.  I just have to accept that I can’t be all things at all times and I’ve lost some of my perceived value by those with whom I work.
That perception by others that I don’t have the value I once did, hurts but not everyone feels that way, thank goodness.  Tonight I got a lovely email from someone I work with on occasion.  She was thanking me for sharing in my blog because she is just starting down this caregiver journey.  That really made me feel good.
So, I’m disappointed tonight…heartbroken for the person who will be affected by the denial even more than me, but trying to face my reality.  My priorities in life have changed.  This blog is now one of those priorities; its how I try to help others in some small way. I have to believe that maybe what I share helps others so maybe some of the trials have a greater purpose as well.  I hope so.
In the meantime, I take life one minute at a time. Have a good cry over the disappointments and move on…It’s just a job now…I have other things much more important to do.

Which Half of the Glass Am I Today?

I have become a “glass half empty” type of person.  I’m not sure exactly when that occurred but it’s definitely true.  Whenever something comes up as a possibility, I think about the risks associated with it and start preparing myself to deal with those possible traumas and disappointments. 
It drives Lynn crazy. 
Lynn is very optimistic.  He looks at the possibilities and he believes in potentials.  He talks about walking again and building the house we started years ago.  I respond with, “you have a lot of muscle groups to retrain. Don’t get disappointed if you are not able to walk by the time you want to be able to do so.”  In my mind, I don’t see walking even as a possibility.  In his mind, he feels that as long as he keeps a positive attitude and keeps trying, anything could happen.   I want to be more like Lynn.
So with that in mind, I’ve decided to turn over my glass and let it be half full today.

  • Instead of dirty carpets that are covered with stains that can never be removed, I see the blessing of dirty carpets that can have anything spilled on them and it not matter at all.  What’s one more stain?
  • Instead of worrying about cleaning up the clutter that has accumulated around the house, I see that I have immediate access to the things I need without having to climb step-ladders or go to the attic.
  • Instead of being sad that I never get to go shopping to pick out new clothes or browse whatever might be there, I realize that I’m not being exposed to the flu and other ailments so many others are getting from being in crowds and sharing door handles.
  • Instead of feeling sorry for myself because I can’t go into work and see people face-to-face so that I get a chance to get away, I’m thankful that I don’t have to put on make-up and do my hair and I can work at my desk in my scrubs and slippers while participating in conference calls with directors and VPs.
  • Instead of complaining about all the medical equipment we have stored in all our spare rooms, I’m thankful that he has access to so many things and is making progress toward moving back to the less dependent modes of movement.
  • Instead of complaining that he’s playing his music so loud I can’t hear myself speak when I’m at the other side of the house, I am thankful that with the music I can hear him sing when for so long he didn’t have the breath to say a full sentence.

I know that as a caregiver, I have to think about the “what ifs” and have contingency plans. I know I am responsible for his safety and for realistically planning for what lies ahead.  But I’m thankful that Lynn isn’t like me.  I’m thankful he doesn’t give up and he keeps hope alive.
I’m thankful that we are different; that he’s “half full” to my “half empty” and that when we blend together we are both “full.”

Just Say "No"?

I have never been one to find it easy to say, “no.”  I’m a people pleaser, I guess, but I find delight in making others happy and I enjoy helping people.  However, I guess for my own sake, and, maybe sometimes even for theirs, I should learn to say ‘no’ but how do you know when it’s the right time to do that?  Here’s some examples of times I’ve found it hard to say ‘no’ to Lynn.
When Lynn got his “back pay” from Social Security.
As is true for everyone, it took us long time to get social security benefits.  We had to wait until we could go before a judge who could see for himself that Lynn was totally disabled. So when he got his check, it was rather sizable.  At that time, he had not been in a wheelchair very long and still had good use of both arms.  Lynn loves to surf fish and he was looking ahead to vacation.  He wanted a way to still be able to surf fish and wondered if there was such a thing as a 4-wheel drive wheelchair.  He did some research and found just what he was looking for…in South Africa.  It could go over sand, climb steps, elevate his seat so he could look over things, had headlights, a horn, ahh…it was cool.  It gave him hope that he could continue to do what he enjoyed most in life for leisure time–fish.  But it was VERY expensive!  It would wipe out all the back pay if he bought it.  He really wanted it. To him it was a symbol that his disability would not wipe out his ability to have fun.  It represented freedom and gave him the feeling of being in control and out-smarting MS.  However, he felt guilty about using all that money for a toy.  He looked to me for permission to buy it.  What did I say?  “Yes,” of course.  How could I take away his hope? It was, after all, his money and not money we had already been counting on to pay bills (though secretly, I had several credit cards I wanted to pay off that I had run up with costs associated with his care). But, the main reason was I just could not take away his hope.
Was that the right decision? Yes for his mental health; no for our finances.  To this day, that machine has not worked.  We took it on one vacation and it would not move in the sand. We  sent the motor back to South Africa in March of this year and have yet to get it back.  Right now it’s a huge obstacle in my living room that has no motor and cannot function at all.  Had I known this, I would have said ‘no’ but not knowing this, his hope was more important to me than the cost.  Therefore, I still think it was the right decision because having hope when you are disabled is essential to life.
Purchasing a New Lift Device
Once again I’m faced with whether to say ‘no’ or participate in hope and once again, I’m going with hope.  Lynn wants very much to stand and if possible to walk, again.  Who wouldn’t want that?  He’s convinced that if he works his muscles well enough that he will be able to do so and that it is not the MS that has caused him not to be able to stand but the deconditioning he experienced when he was hospitalized two years ago for so long.  The doctors can’t say for sure though they believe that progression of his MS is the reason for his immobility.  However, with the change in his diet to following the Terry Wahl MS diet and his dedication to exercise, he truly is moving more than he has in years. Who’s  to say that he could not eventually stand if he was able to recondition all the necessary muscles?
The problem with reconditioning muscles necessary for standing is that there are so many of them.  Doing exercises to isolate one muscle group at a time requires considerably more energy than he has available.  Therefore, once again he has done his research and identified a device that will help him stand with assistance.  It’s called a Rifton TRAM. It allows the caregiver to put a saddle under the hips of the patient and gradually lift them to a standing position.  With the saddle in place, they have support in the amount needed to bear weight.  The advantage of this is that by bearing weight, he can activate more muscle groups plus the stress on the bones, makes the bones stronger.  Osteoporosis sets in when there is no stress to the bone and that causes bone deterioration which makes the person more susceptible to fractures.  So by using the TRAM not only could he strengthen muscles to stand on his own but could help prevent future bone fractures. 
We are in the process now of getting the information necessary to the insurance company.  However, even if they do not approve it, he still wants to buy it because he’s convinced of what he can achieve with it…and who am I to say he can’t?
What’s going through my head though?  Will he be crushed if he cannot stand and go into a deep depression?  Can we afford to pay the full price at a time when year-end bills are coming?  His son’s wedding is in four weeks and we have to prepare and pay for the rehearsal dinner as well as Lynn’s clothing and get their wedding present.  Christmas is coming which means presents.  And of course, there are the multiple bills that need to be paid.  Knowledge of all these needs causes me a lot of stress as I agree to buy the TRAM even if the insurance won’t pay. 
I really want it to work for him but I keep remembering that behemoth wheelchair in my living room and don’t want another useless device in my house so agreeing to this takes a lot of faith on my part.  I know however, that God will take us through whatever lies ahead and if it doesn’t work, He will help us both deal with that.  If it does work, then He will be gloried in helping us to get the device through faith. 
So, once again, I just say, “Yes.”