Multiple Sclerosis Carer

Last week, I said to Don, “Do you want to come home tomorrow?”  He just said without any enthusiasm, “Oh all right.”  (Yes, I know I wrote a blog entry a while back to say that it was all too hard getting him into the car with the lifter, but we seem to have it down to a fine art since then, and it has been going smoothly.)  I told him I had a nice piece of steak that he likes and he again said, “All right.”  (Steak is one of the things that of course they don’t do; when you have to provide for 124 meals in one go it’s not easy to  do “medium rare” or whatever the preference is!)

When I turned up in the morning, the nurse took me to one side and said, “He is adamant that he doesn’t want to go home.  We got him up and into the wheelchair to go home but he says he doesn’t want to go, and he has been saying all morning that he isn’t going home.”

I asked Don about it, and did he not want to come home after all? and he just said, “No.  It’s all too much trouble.”

“For you?” I asked. “Too hard for you?  Or do you think it’s too hard on me.”

“Both.”

I wasn’t sure what to do.  Was he just thinking of me, pushing the wheelchair along our difficult gravel (and deeply rutted) driveway, and the process of getting him in and out of the car?  Or was the effort really gettng too much for him, and he was deflecting that by saying it was too much trouble for me?  I didn’t want to pressure him, so I said, “Well I can stay just like I usually do, and sit here with you.  But I’ve got the steak out on the bench at home to thaw, and some other stuff I got ready for lunch, so I’ll just go home and put that away, and then I’ll bring the dog back with me and I can stay.”

“Oh no, if you’re going away again, then I’ll come with you.”

And so he came home after all.  And the transfers went smoothly and quickly, and we watched a couple of episodes of Seinfeld, and then we had the steak which he enjoyed very much and some tiramisu that I had (left over from something I made for the church), and then we watched a couple of episodes of A Touch of Frost and then Question Time in Parliament.  He dropped off to sleep during that (understandably!) and it was quite late when he woke up and decided it was time to go back.

So he had a really good day at home, just a normal sort of day like we used to have before.  And when I asked him if he’d enjoyed it more than staying in his room, he said yes.

But still, I do think coming home is losing its shine, and one of the sisters told me a while ago that she thought he was becoming “institutionalised” and getting so used to the place that he is more comfortable there than going somewhere else.  Don’t know how I feel about that.  I suppose it’s better for him, rather than hankering to be somewhere else, to be in the place you feel safe and comfortable.  But it’s so nice when he comes home and we can just have a meal together, watch TV in our lounge room, sit out the back and look at the Lake, just be normal.  But it seems he is getting to the point where he would prefer to be staying put.