2011 MSCaregiverDonna

Ever make plans for the future that didn’t quite turn out as you had hoped?  Yeah, who hasn’t.  That’s how MS affects my life.  We make plans and then he has a new struggle to deal with and the plans we had, take a back seat.

This is a second marriage for Lynn and me.  When we got married, I had two children and he had one whom he had with him intermittently.  He had a log cabin with two bedrooms; I had a house with three and a foundation for a fourth.  Therefore, we moved into my house.  Lynn is a carpenter by trade and had built his log cabin. Therefore, we decided to buy land and build our own home, literally.  Lynn designed the house, sent the plans to a timber frame company who took the plans and created shop drawings. We bought the timbers, he then took those plans, and in his spare time after work, he cut the timbers for the tongue & groove assembly. On weekends, he put in a foundation for the basement which took two years for him to do on his own.  By the end of the two years, the fatigue from the MS made it difficult for him to tolerate working more than an hour.  If it was hot, he couldn’t work at all.  After finishing the foundation, he began to put stone on the columns that would be the porch.  I had to mix the cement, bring him the stones and help him hold them in place at times.  Gradually, he could not do even that.  So now we have land with a finished basement and a few columns with the stone in place.  He hasn’t felt like working on it in over two years.  Plans change…

During the past two years we have been dealing with his change in mobility.  Two years ago he was able to walk with a rollator. Now he uses a powerchair and has limited use of his right side.  In the mornings he can feed himself.  By night he can’t do that.  On his “bad” days, I feed him every meal and do everything for him including scratching any itch, helping him unclench his curled up fingers from spasms, helping him change positions…just about everything.  So instead of building a house, we have focused on adapting this one.

Has your loved one gotten a powerchair yet?  They are wonderful but not always the easiest thing to get into and out of tight spaces.  When Lynn first got his, he wanted to see how fast it would go so he would get at one end of the hall and “run” to the other end.  Sometimes he would try to make the turn into the bedroom door.  Not such a good idea.  We eventually had to take down the door  because he hit it so many times, it was coming off its hinges.  We also had to put up metal plates over areas in our walls where the metal foot plates of the chair would hit the walls and cut into the sheet rock.  We currently have a rather large hole in the wall where the handles behind the chair cut into the sheet rock when he turns into the bedroom.  Where before I used to care about my house looking neat; now I just care that it’s functional.  What’s important changes…

When Lynn first got his wheelchair, he was embarrassed to be seen in it.  He was dealing with the loss of his image as a man and a provider.  He did not want to be seen as weak or have people feel sorry for him so he would tend to avoid people.  Me, as I mentioned before, I’m a realist.  If he needs a wheelchair, he needs a wheelchair and I don’t care what people think.  The wheelchair made our lives easier and that’s all that mattered to me but I had to be sensitive to how he felt. That got frustrating because I wanted him to still go to church with me and I felt he was letting his pride get in the way of living his life.  So I would have to remind myself that this was his life and his way of coping.  I needed to let him adjust the way he needed to–gradually, a little at a time. So for much longer than we should have, we used a rollator as a wheelchair so that he could tell himself he was not wheelchair dependent yet.  He finally made the transition to the wheelchair when circumstances made it necessary for us to use one for a while on a trip and he saw how comfortable it was.  Adjustments take time….

We are at a point now where we are trying to decide whether to finish that house we started.  We have prayed a lot about it, especially Lynn.  He was talking to God one day and asked Him to let him know what he should do.  Out of the blue, he got a call from someone asking if we wanted to sell that land.  So you think, is that the answer, to sell the land?  We don’t think so.  The person who called wasn’t really interested in buying; he was a builder and wanted to finish it.  He wasn’t the one to do that because he had never built a timber frame house before but it got us thinking that we needed to make a decision.  I contacted a friend whose husband build’s timber frames. He was great!  We felt very comfortable with him and feel like he’s the one to build it.  Lynn can be the general contractor since he knows how to do that so he can feel that he’s still in control of finishing the house.  We have many friends who are tradesmen; so he’s contacting people for bids.  We are still deciding what to do–need to make sure we can afford it since this house might not sell well–but it’s giving him a project and a purpose which has been missing for a while.  So again,  plans change or do they just roll around again?

I have my fears about building the new house.  I’m the only one working…what if I get sick and can’t work?  What if we start building and he get’s sicker and can’t finish it?  Should we save the money so I can hire someone to help me provide his care?  Do we adapt this house more (we’re talking major bucks to make the changes we will need) or just fix up this house to sell and adjust the floor plan of the timber frame?  Either way is not cheap.  If we move, we will be further away from my daughter and her husband but closer to our two sons and my job.  My daughter is ready to start a family and I want to be near our grandchildren.  Will moving further away make that more difficult to do?  So many questions.  Most of my fears I try to keep to myself but sometimes they get overwhelming.  I’m the caregiver.  I have to look out for both of us and our future.  I want the new house but he’s been in the hospital three times already this year; is it a good idea to build a new home? So many questions and so few certainties.  So I leave this blog with the request for prayers from you that God will show me what to do…to make it clear what our decision should be about the house(s)… will provide a way for whatever that decision may be and help me to find peace in the decision.