Carol’s story: living with familial Alzheimer’s disease

We all go upstairs on occasions and forgot why we’ve gone up, you know, and we laugh at ourselves. It’s very difficult to laugh when you know there’s a possibility you’re carrying the gene that might explain it. So it does tend to make you over examine, or perhaps extensively reflect about is this the beginning? So, there’s always that sort of unwritten question, are these the first signs? So that things that would have, things that concern me about Carol. For most families would have been oh, she’s going through the menopause, midlife crisis, or she’s at a certain age. Which is what many women with Alzheimer’s get told initially.

You don’t have that luxury, you know, the moment you know it’s there, it kicks in. The progression of the disease is slightly different for every person. No one person progresses the same, even though they carry the same genetic mutation. So the difficulty is that we see Carol’s aunts and uncles went through with it, and each was slightly different. And you wonder what path you will go, what will actually stop functioning first. The third issue is about generational. Carol is now the second generation. My children will be the third where we’ve been aware of the genetic. Now Carol’s dad and aunt’s and uncles were a generation before Aricept and Exelon, all those sorts of drugs.

Not that they do a great deal, but they enhance what remains. But the care was, the care was, I’m trying to be generous but the care was 40 years ago, and it reflected what people thought 40 years ago. So the next generation, Carol and her cousins are developing it now. The problem for us is that we’re trying to create a way forward about care about medical provision, and for many of us the image is what happened with the generation before, And actually we’ve moved on. So, we actually live with the vision of what we’ve already lived through, but not quite sure what’s available now. So, we’re constantly balancing the reality of the present with the fears of the past.

So, for those of us who are carers in the family, it’s actually more psychological. Or as much psychological as it’s actually physically different for people who just normally develop Alzheimer’s. We actually see the disease in the context of a much longer time and different context of caring and provision. Carol never had the genetic test. There was a stage where she could have had the test, but there was no purpose really. No significance in the sense that there’s no cure, there’s no delaying tactic. She was coming down here blindly, as a blind test sample, so I mean, they have here 20 odd years of MRI scans for Carol.

So I think she’s probably got one of the most MRI scanned brain anywhere in the UK. So, she was involved even then, even before the DIAN scheme kicked in. She was involved right at the start looking at this. The problem with the genetic testing, no cure, no control, no holding back. But the moment she knows she’s got the gene it has impact on mortgage, it has impact on insurances. Once you know you’re carrying it, you have to declare it. If you don’t know, you can’t declare it. And we were concerned because it would have impact on the children. Because then if they knew mum was carrying the gene, then it might shape their future.

I mean, they do know now, we are aware. But they, at this stage, haven’t had the test either for the same reason.