| |
 Jan's husband, a doctor and partner in a suburban practice, was diagnosed with Alzheimer's disease in his early 50s. What's it like caring for a person with Alzheimer's?
It's difficult. It's really sad watching your best friend and the person you've been closest to just disappear. I suppose that's the hardest thing - watching him every day just go, so that now he's nothing like the man I knew. He's like a stranger. You are just looking after a different person. He's totally dependent. I'm the centre of his life. He's got no initiative, no way to fill his hours.
It's awful. It really is awful. But then, I think it's made us stronger as a family. It's made us closer. The positives are that it's given me lots of strengths that I don't think I would have had. I don't think I would have been as independent as I am. I was very comfortable being totally dependent on Jamie. Not totally dependent, but I was very comfortable having him make decisions - and that's all changed.
Do you get lonely?
It's lonely. It's lonely because he's gone and you no longer have relationships as a couple, and most of our relationships were with couples. That's all gone. I shouldn't say all gone, but most of it's gone. I still have lots of my friends and I have maintained those friendships, but we can't really do much as a couple. Jamie says we go to movies, but we only occasionally go to a movie because he can't really understand movies anymore. We go to concerts and we go to the opera; we meet friends there and it's a way that he can mix with people.
How has your life changed?
It's almost like your life's on hold. The whole day is just geared to filling Jamie's hours and keeping him happy. I do as much as I can on my own. I do some embroidery and so on, but it just feels like my life's on hold for the time being. I keep thinking there's a life after Alzheimer's and, for the time we're together, we'll just take it day by day. If you're looking to the future, it's horrifying. The next step always seems frightening, but once you get into it, it's like, 'Well, so what?' And the next step after that seems difficult. It seems slow. It seems very slow.
How has it affected your relationships with family and friends?
If I look at it from the positive side, it sounds like it's awful, and it's not. There are lots of really nice things that happen. In amongst it all, your close friends become closer. For us, our family's become much closer. My relationship with my mother - which was always fraught with tensions, as relationships with mothers often are - has become just wonderful. She's 89 and she's been the most wonderful friend and support through it. It's made a difference to her too. She's changed in lots of ways too. She's less demanding and less inward looking, I think.
For all of us as a family it's made a huge difference. Jamie's two brothers have become very close. They really have been wonderful. I think it's changed, in lots of ways, the closeness of our friendship with them; on the other hand, it's been hard for them too because there's the worry all the time of whether it's hereditary. You can't worry about everything all the time; it's a concern, but it's not something we're obsessed with, let's put it that way.
The positives are that it means you know how much time you've got left together. It means that you make an effort, that you put time into doing things with each other now, rather than putting them off. So we've done lots of things together, we've done lots of things as a family, and the children and I have talked about lots of relationships within the family and what's happened. I think they are things we probably wouldn't have talked about if Alzheimer's hadn't happened. I think we would have all gone about our busy ways. So that's been good, but it's not so wonderful that you'd want Alzheimer's so you'd have all that!
How are you coping with your changed role in your relationship with Jamie?
Well, now Jamie loves everything I do. So, rather than there being conflict between what he wanted to do and what I wanted to do, we now just do what I want to do because he thinks that's wonderful. Whatever I do is wonderful, whatever I say is wonderful; he thinks I'm absolutely wonderful and so I guess I lead a different sort of life. The best thing I did was organise the finances straight away, so that it was easy for me to manage and change house, and we got rid of things that we otherwise would have hung on to.
What would you like to say to someone who is caring for a loved one with Alzheimer's?
I don't know whether it's moving on, reassessing priorities or what. It changes your approach, your attitude, your outlook on life. And it's not all bad. That's what's so odd about it. You feel as though it should be all bad, but it's not.
> Find out more about Alzheimer's disease
This page has been produced in consultation with:
| |
