Friendship

One of the saddest things for me to watch is to see how much my husband misses his friendships. Don't get me wrong, our friends have been wonderful and have been around. The problem is it wouldn't matter how much they visited, or tried to get Bob out, Bob would still miss them. He misses what he is able to do with them, going out and having fun, boating, camping, driving in the bush, going for drinks, even doing crazy things at times. He misses being able to participate in life with them. He feels now when he sees his friends he doesn't have much to talk about except his ALS, and he hates that. He wishes for his friends to be happy of course, but it makes him exceptionally sad too, that he isn't involved. And even if he wanted to do some of these things, it is hard for him to get out because of this nasty disease.

June 2007 Update

It is hard to believe that it is June already. Summer is here and it seems like it was just the beginning of the year. My husband continues to deteriorate because of his ALS. His right hand which has been pretty much the last body part that was working, now doesn't work very good at all. He manages to use his electric chair, but for the most part it is even hard to use the TV remote. This drives him crazy. One of the things about ALS especially for my formally very active husband is the boredom. You can only watch so much TV. Or he watches my daughter and I play, or he watches people come here and do stuff for us. Or he watches the caregivers do things for him. This drives him crazy too. I think if we could alleviate some of that boredom it would make it a little easier for Bob. We have tried audio books, he wasn't really into it though. What would be really good is some sort of video game that has a head control. He does have OK neck muscles still, they get tired easy and he has the head rest on most of the time.

We have a palliative doctor who is wonderful and comes to see Bob every week. She helps him with pain management and sleeping problems primarily. Plus we have home care nurses come 2 x a week to help with meds or any problems that we may be having. This has been a big help. Also because now that Bob is under the palliative care program we don't have to pay for most of his prescriptions. His prescriptions were costing about $400.00 per month, yikes!!! So now that is one thing we don't have to worry about so much.

One of the positive things in our life, is our daughter Skye. She still manages to make Bob smile and laugh. So that is what I hold on to. To see the two of them together is heartwarming. She is quite comical and she is a great little girl and that definitely is party attributed to who her daddy is.