I’ve just seen November is Alzheimer’s Awareness Month in the U.S. It’s made me think about what my own awareness of dementia was like before my dad developed Alzheimer’s and vascular dementia.
I’m not sure I really knew there were so many different types of dementia. Starting the Instagram account for this blog has opened my eyes to the many forms it can take, and how it affects people of different ages and in very different ways.
I’m also not sure I understood that dementia was about so much more than memory loss and forgetfulness. The way my dad’s dementia affects his mobility and his body, in so many different ways, has been one of the things I’ve found hardest to comprehend.
When I think about what I did know, two films come to mind as having shaped my understanding of dementia more than anything else: Iris and Still Alice. I remember both affecting me deeply, making me cry. They showed something of the reality for loved ones: watching someone you know gradually disappear from the person they once were. Although both films focus more on the experience of a spouse than that of a son or daughter.
There have since been acclaimed films about dementia, including The Father, but I haven’t been able to bring myself to watch them. Living with the reality of dementia has been so intense that, when I sit down to watch a film, I don’t want to be reminded of it or upset by it any more than I already am.
It’s interesting, though, that it was films, stories, that first gave me a real understanding of dementia. I’ve always identified strongly with stories and personal perspectives, and I think many of us do. It reminds me why I started this blog.
I’ve struggled to find the time to write much here recently. As I’ve discussed before, I’m constantly juggling work, children and my dad’s dementia. Work has become more intense since I took on a full-time job after several years of freelancing.
It’s been interesting and good, but it hasn’t left me with much in the tank for anything else. What energy I do have goes towards trying to spend quality time with my children, who I always feel I don’t spend enough time with. They’re growing up so fast (such a cliché, but it’s true) and I’m conscious of wanting to soak them up while I can.
And, as usual, I feel I haven’t visited my dad enough.
I think about that other, rather horrible, cliché of putting an old person in a care home and never visiting them. It’s so much more complicated when dementia is involved. Visiting can be incredibly painful, on top of the practical difficulties of finding time around work and other caring responsibilities, or living some distance away.
If I wanted to raise awareness about something this month, I think it would be this: don’t beat yourself up about it. And don’t pressure friends who have a parent with dementia to visit if they’re finding it hard or don’t feel able to manage it.
Sometimes going to see your parent can destroy your day, your weekend, even your week. It can drag you down when you’re already struggling.
I called this blog Dementia in the Family because dementia affects everyone in the family. Of course, it affects the person with dementia most. It takes away almost everything from them. But it also takes so much away from everyone else. It changes how you feel, creating a grief that goes on and on and on. And it changes how you live your life, with the thought always somewhere in the background that this might happen to you one day, too.
When I started writing this blog, I worried that I might be seen as insensitive, that I should always be centring my dad and his experience. But what I wanted to do here was speak to other children of dementia, to those who feel they’ve lost a parent who is still here.
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