church

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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God's Blessings

Often my journal entries discuss the challenges of being a caregiver but today I want to share a blessing–my church family.
Before Lynn was diagnosed with MS, he and I were very involved in our church.  We both were in choir; I helped produce drama enactments to support the sermon;  Lynn played drums for the praise band; we both played  hand bells; and we both were in dinner theater productions.  Three years ago, Lynn had to drop out of most of the activities he did due to fatigue and loss of coordination and strength.  Two years ago, I had to drop out due to my need to be home to care for him.  Since December 2010, neither of us have been able to attend church but are blessed to be able to attend through listening to the sermons on the church’s internet site.
Though we were well-known when we attended, there were many people who did not know us when we attended and I am sure that there are many more who have never met us or had any contact with our family since we had to stop attending church.  I share that fact to emphasize that the blessings we receive from our church are not due to a family connection or special relationship.  No, the blessings we receive from our church are due to the outflowing of God’s love for us through them. I think you will agree when you read what they have done for us.
First off, we are on the prayer list regularly and we get uplifting cards for all occasions and sporadically throughout the year telling us that we are being thought of, prayed for and remembered.  That is such a comfort when we live our lives in somewhat of an isolated fashion.

  • When Lynn started having difficulty walking, a group of men put in a ramp on the back of our deck so he could come in and out using the wheelchair instead.  Without that ramp, he would not have been able to leave the house for medical appointments much less any other trip.  The labor and supplies were provided by church members.
  • We asked who in our church could advise up on getting a handicap shower installed.  Within days, a shower had been ordered and two men from church installed it.  Not only was the labor free but the shower was provided by donations from the church members.
  • When Lynn was in the hospital two years ago and I was depressed because I could not decorate for Christmas, a group came over and decorated our home.  Not only did they decorate, but discovered that our refrigerator was on its last ice-cube and they got us a nice second-hand one that works wonderfully (without multiple containers to catch the leaks it produces like my last one.)  Last year several people came over once again to help with putting up decorations AND taking them down.
  • Groups have come over to rake leaves, mow grass, clean up debris after storms, and do all types of yard work.  One group came and tore down an old play house and a fence that was falling down.
  • One of the angels from our church cooks for us each month.  She fixes all of Lynn’s special diet meals and freezes them in individual containers so all I have to do is thaw out a meal when it’s time to feed him.  You can’t image (or maybe you can) how much I appreciate not having to take the time to prepare those meals three times a day.  Several members contribute to the cost of the food she prepares so that most of what he eats, doesn’t cost us a thing.  There is another Sunday school class that brings us bottled water every two weeks.
  • One of the members comes each Thursday to help Lynn with his writing (typing).  She helps him write his blogs or chapters in his book or whatever other correspondence he needs to get out so I can concentrate on my work.

If the church finds out we have a special need, they take care of it or at least help us find a way to meet the need. Every once in a while we even receive donations to help us with some of our expenses (which you know are a lot if you’re caring for someone with special needs.) I know there is much more they have done than I have listed here.
In fact, what lead me to write this was what happened while we were on vacation.  We came home to a house that had a new coat of paint, a newly stained deck, and fresh landscaping for my azalea beds!  A group got together to spend their time off this past week painting our house while we were on vacation!  What a blessing they have given us!
Our church, Gethsemane Church of Christ in Mechanicsville, Virginia, (http://www.gethsemanechristians.org/welcome/) is a God centered place of worship.  Their mission to follow Christ faithfully through word and deed and to demonstrate Christ’s love through action.  The blessings they have provided our family are not unique to us.  They have done the same for many other members.  If a member has a need, they try to help.  They are not a wealthy church or a large church; they are a rural community church made up of average people who love their Lord and each other.  We are truly blessed by their generosity and faith and by the Lord that they (and we) serve. 
I wanted to publicly thank them for their love and support over the years.  As a caregiver, I can’t do it alone.  As a person with MS, Lynn has much he cannot do.  But through the love of Christ demonstrated through these saints of the Lord, we are truly blessed each and every day. 
I hope you are fortunate enough to have such a church family as well.  Their actions are not about religion or a particular faith-based group but are instead a commitment to the Lord Jesus Christ, our savor, and our healer, who never forsakes us and who will be there for anyone who chooses to be his follower.  Thank you, Lord Jesus, for being there for us.

Thanksgiving

This image shows a Intensive Care Unit.

Last year on this date, Lynn was in the intensive care unit of the Medical College of Virginia Hospitals (MCV). 
By today’s date, he had been in the hospital since November 6 and would remain in the hospital another two weeks. During that time I stayed with him 24-hours a day.  I slept in a reclining chair at his side and was up every few hours helping to make him comfortable.  He does not remember much of that time and what he does remember is clouded by the hallucinations he was having so at times he cannot be sure what was real and what was not; but I remember every bit of it.
I remember having my step-son stay with him while I went to work to teach a class 1/2 day on Nov. 5 and coming back to find he had not eaten anything all day and had drunk very little.  I remember being up with him most of that night and deciding at 4 a.m. that he needed to go to the hospital because he was feeling so bad, calling my son-in-law to help me get him into the car, and then driving the hour to the hospital.  I remember the kindness of staff who brought me coffee and a snack during the day; the visit by my daughter to bring me lunch and then her return to find out what I would need from home when the decision was  made to admit him.  He had stopped eating or drinking due to a urinary track infection that he could not get rid of due to a mistake in reading the urine culture and the wrong antibiotic being prescribed. 
He had become so debilitated that he just could not bring himself to eat so they put in a nasogastric tube to feed him thinking it might be an MS exacerbation.  During a tube feeding, he coughed violently and coughed up the tube causing some of the feeding to go into his lung.  As the week progressed, he began to sleep more and more.  The day before he was to be discharged, he slept all day and could barely be awakened.  His temperature would not register and his blood pressure was dropping.  It was discovered that his temperature had dropped to 95 degrees rectally; just barely at the level to sustain life.  He was sent to the ICU for the first time and put on a heating blanket for hours.  Pneumonia was discovered and he started “third spacing;”  (that means all his body fluids were seeping into the skin and out of his blood vessels.)  He looked like the Phlysberry dough boy.  They took 1000 cc off his lung and the diuretics took out about 3000 cc in fluid through his kidneys.  He was very sick. 
During this admission he was in the ICU three separate times before going home.  I wasn’t entirely sure he would make it home, but he did.  Thinking back to those days, I’m so thankful for all those people at the hospital who brought me food, stayed with him while I went to get a meal away from the room, found me a place to shower, brought me clean clothes and supplies, checked on me to see what I needed, took care of things for me at home, and prayed for us every day.  I could not have made it through that time without them.
I am also thankful for the friendships I made with the nursing and medical staff; the excellent care he received, and the diligence of the health care professionals in determining what he needed to get better. I am very grateful to my church especially who came to my house and decorated it for me for Christmas so we would come home to Christmas at our home without the work involved. We were and are so blessed.
That was Lynn’s first admission last year, ever.  He had two more during the year; each time he was in the ICU for part of the time.  Once he almost went on a ventilator which they felt he might not come off again.  We were so fortunate to have the best healthcare workers anywhere caring for him and pulling him through and many, many people praying for us.
This week is Thanksgiving and we have much to be thankful for.  It has been a very challenging and rewarding year.  It’s been full of fear, faith, hope, and joy and much more.  I hope the coming year won’t be a repeat but I know that if it is, I’m not alone and for that I’m truly blessed.
Have a safe and healthy Thanksgiving.
Donna

Shower Day

Walk-in; roll-in shower with handrails

For most people, a shower is just a routine part of their day.  It takes no more preparation than making sure you have shampoo and soap and clothes to put on afterward.  Not so, if the person who needs a shower is in a wheelchair and cannot help themselves.

When I first started bathing Lynn, I had a shower seat I put in the tube.  I lifted him onto the bench, shifted his legs over the edge of the container, and used a hand-held spray for bathing him.  Reaching over the side of the tub was difficult, and we were both soaked by the end of the bath.   My back also was usually aching by then too. We choose this method because it was the only room I could get a wheelchair into since bathroom doors are more narrow than other entries.  (why is that by the way?)

 

Then our church got us a shower into which we could roll a wheelchair.  That was wonderful.  I lifted him from the transport wheelchair onto the shower seat.  It allowed me to be in the shower with him and not get wet but have plenty of room to bathe him.  The only issue was lifting him back into the wheelchair while he was soaked.  Lifting him while soaked didn’t feel very safe, and a few times, I wasn’t sure I would make it from the shower seat to getting him back safely into the wheelchair due to slippery surfaces.

Then we hit upon the perfect answer…a shower wheelchair!  Now we have the best of both worlds.  I can roll him into the shower, stay relatively dry while I bathe him and I don’t have to lift him while he’s wet.


But still, shower day is a big job.  It takes a lot of preparation time to get everything ready, then time for the bathing and drying and dressing.  I always wait until after I bathe him to take my bath because I get pretty sweaty from working in the hot shower, but this is SO much better than what we had before.


One word of caution, though.  Today I was going to save time by coloring my hair while I also bathed him.  I put the color on and put a shower cap over it.  You’re only supposed to have the color on for about 30 minutes.  We had some unexpected events with the shower today, and an hour later, I still had not washed out the color!  Nothing happened. I still have my hair, and the color’s okay so no big deal but trying to combine the two might not be such a good idea in case you’re ever considering doing the same thing!