Sunday, August 26, 2007

It's official

Another week of doctor visits and therapy. We saw the Movement Disorders specialist this week. He agreed with the previous neurologist that Grandma has PSP. With this visit came the realization, to her, that this is not a better diagnosis that PD. Up until this point she seemed to think that PD was about as bad as it could get. Unfortunately, PSP progresses faster and doesn't have medications that help. So, the doctor took her off of the Parkinson's meds she was put on last month and is putting her on an anti depressant. I was really happy about both of these things. I really think she needs the anti depressant, but didn't want to bring it up.
On the way home from the doctors, she and I had a serious conversation about what she wants for the future. After our talk with the Dr. it became clear that if we don't discuss these things soon, she won't be able to. Eventually this disease will take from her the ability to control all her basic functions. We have decided that she will continue to live with us as long as I can care for her. She understands(as best she can) that eventually her needs will surpass my abilities. At this point she has asked me to find an appropriate nursing home, close to our home, for her. This was a horrible conversation to have. She is petrified of what is going to happen to her. I can't imagine what that would be like.
For now, we are continuing with life "as usual". She is going to continue PT/OT as long as her insurance will cover it. Although she may never see an actual improvement, it may help slow the progression down a little. Even a little bit is better than nothing. In a few weeks, once the shock of this news is a little less fresh, I will start looking into nursing homes. I want to be prepared when the time comes that we need to make a change. I hope this is years down the road, but I don't want to wait to find out.
I'm having an easier time dealing with the every day interactions. I definitely think taking the time to exercise is helping. I haven't quite met my 5x/week goal yet. I find that reminding myself that she's not intentionally doing things to annoy me is helpful. I'm also adjusting to repeating the same information over and over.
We are discussing getting Grandma a pet. Probably an older small dog or cat. I think she would enjoy having something to dote on and care for as best she can. I have to keep in mind that whatever we choose, in the long run, I'll be caring for it. So, I'm thinking long and hard about whether I really want that added responsibility. At this point, if I honestly believe she'll enjoy it, I'll end up getting it for her. There are so few things she truly enjoys right now, I'd love to provide that for her.

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