Caregiver Perspective: Commitment
I’m starting my “staycation” today. You know the kind; where you vacation at home so you can get things done that you never have time to do when you’re working. We normally vacation at the beach each year with our children but when the time came this year to pay off the rental, we realized that though we had some good times when we were there, for Lynn, most of the experience was exchanging one bedroom view for another with a lot of recovery time thrown in without access to all his special needs supplies (though it felt like I packed the house each time we went.) We decided the work involved in going and having to work around his special needs while there would not be offset enough by the short periods of time that we had available to enjoy time with the family. We enjoy having the kids around but often they were in another room or outside so we didn’t really have them around that much. So we cancelled the condo at the beach (lost $3000 in canceling the date but in the long run we preferred the loss to going.)
At first, I thought about not taking any time off at all since I use my leave time fairly often to take him to appointments or to provide his care, but then realized it would be a great opportunity to get some things done around here, so now I’m really excited about it.
My main goal for this staycation is to clean out my garage so I can move items from the spare bedroom to the garage and move things from another bedroom to the spare room. All this moving around is in preparation for installing an exercise pool. An exercise pool, mind you, that I don’t want but one that Lynn has his heart set on getting.
The last time we were at the beach, Lynn was able to be in a pool and really enjoy the experience. Each day he was able to exercise in the warm water and be upright for about an hour. Though he was tired afterwards, he says the ability to be upright that long always left him feeling better. As soon as he came back home, he began exploring the possibility of getting an exercise pool. One day I came home to discover that he had cashed in his retirement money and put a down payment on a pool. He had talked to me about it at length and I had brought up several concerns that I thought he would see as prohibitive, but I guess I’m not very good at providing my arguments.
So far, he has just invested the initial down-payment. He has two years from the date of the down-payment to get the pool installed at the original purchase price. It’s been almost a year now and I have brought up my concerns on multiple occasions to no avail.
From my perspective:
- That’s a lot of money to invest in something that we don’t know how long he might be able to use.
- What if he gets worse and we need that money for his care?
- What if I have to go back to working in the office on campus rather than at home and we have to get someone to stay with him full time? Where will we get the money?
- What if I develop a medical condition and can’t put him into or get him out of the pool?
- When will I have time to put him into and get him out of the pool (not to mention the time in the pool helping him exercise and remain upright)?
- How much maintenance time will be involved?
- What impact will the humidity and chemicals have on the walls and pipes in the room?
- What will we do with all our stuff now in that room?
- What will be the resale impact on our house?
- Is moving forward with all these unknowns, really a good decision?
From Lynn’s perspective:
- Yes, moving forward is worth it because standing up will make him feel better even if he can’t do it every day.
- He says his sister who comes over once a week will help him exercise so it won’t be a burden on me (He tends to dismiss the fact that I’ll have to get him dressed to swim and changed to dry clothes afterwards; both of which is likely to take 20-30 minutes each.)
- Any price is worth it if he can feel better. It’s not so much that he expects to regain function (thought that would be a nice bonus if that happened); it’s about feeling better.
Lynn has felt bad for so long that he just wants to have some days where he is not miserable. Even if the number of days he can be in the pool may be limited, he just wants something to look forward to.
So, we’re putting in the pool and I’m committed now to making it happen for him. All my “what ifs” will be dealt with as they occur or if they occur and I’ll trust that God will get me thought those just as he gets me though everything else. I understand his need to just feel good every now and again and though it might not make good sense economically or financially, I’m committed to his project now. So, off to the garage to start making it happen…ugh.
Do you celebrate your MS Anniversary?