May 7/12 There’s this guy living at my house. I couldn’t tell you exactly when he moved in because this guy looks like my husband, all my friends call him by my husband’s name, and he wears my husband’s clothes. But my husband is gone. This guy laughs like he used to sometimes, and his voice is very similar, but it’s definitely not him. And not only does he sleep in my bed, but I’m responsible for him! And he is a lot of work. I’m so busy taking care of this new guy, I hardly have time to think about the old guy – where is he? What happened to him?
April 25/12 She says when she walks into the room and looks at him she sees her husband, but as soon as he starts talking she realizes again that he is gone. The body keeps functioning but he is not there. She says she is weepy a lot. And it only makes sense. I have seen this a couple of times now. She has lost her husband but hasn’t buried him, doesn’t get to really grieve the way a funeral allows, and neither do friends or family. Everyone just keeps trying to behave as though he is still alive. And physically he is. But it is a tortured existence for both of them as well as for the closest of family and friends. One visit he says he is better and is ready to go home, begs it of her. The next visit says he doesn’t want anyone to see him like this – no one should come at all. When he was first diagnosed they said 10 years but of course the medical community is thinking of those who are diagnosed at 75 or 80 not at 55. No, we get 25 years or more of this. She can only make herself go a couple times a week now. The staff says that when he is without visitors he seems more content, it is the company and love of others that throws everything off kilter – like some tiny thread holding him to the rest of his former world. And she is exhausted, depressed completely worn out after each visit. Grieving the loss all over again, twice every week without end. And then the next day she gets up, goes to work and acts like life is normal.
March 12/12 Its almost a year since I wrote anything? That can’t be right. In my head I’m talking to myself continually. So what has changed since July 2011.
Still have not pursued the CCSVI surgery. I’m just chicken. And I know that I also kind of keep it out there as a last hope thing – when all else fails…..Al & I head to Arizona on Friday and I have him booked for a Venogram (doppler) and a surgical consult. I keep reading all the research I can find and I know that I won’t have anything surgically done in Arizona. First, I’m just chicken. I can live with Al how he is now rather than risk something bad happening – well that’s a joke – something bad is pretty well happening all the time now so who am I kidding? Anyway, it makes me feel better to think I am actually doing something.
Big break for me though. Joined a group in Calgary. All early on-set (55 to 62) Although one couple is way younger with 2 very small children. So my plate is looking less full. The group is fabulous and all sharing my story. It just makes it better knowing others are out there. I keep pretty good contact with a couple of them and we go every month.
Holidays last fall, this winter and next week. Al will get on a plane and just go anytime. He does love to be busy. Of course organizing all that is draining but I am getting better at it, and getting more help. Home Care in the AM so I can get ready without running back and forth – one pair of underwear is enough! Are those yesterday’s socks? A long sleeve t and a heavy shirt are enough….Al needs help to shave and now thatI don’t have to do it by the time we are sitting down for toast I am a lot more relaxed. But he needs to be cued almost continually now. But continues to be easy to get along with as long as I don’t hurry him too much and keep my cool.