Difficulties and Confusion.

I wonder how other people feel about having dementia and if you’re reading this, I wonder if you’re experiencing the same difficulties.

I’m in a small weekly dementia group and when we get together, we laugh. A lot! I don’t find many other occasions for laughter but when I’m with my group everything seems easy-going and light-hearted. On reflection, and as they seem to crop up a lot in my mind, I think I’m going to call these people ‘The Thursdays’. (If I remember). So, sometimes we, The Thursdays, share our experiences.

There’s not an awful lot of time for that but when it happens it happens very organically. Dementia is a tricky journey where, I think, we probably all feel a bit lonely, a bit diminished and generally not the people we’re used to being. I’m more alone, both internally and externally, than I used to be and I guess, from my point of view, I’d just like more time to share with these new friends. But, given the time-frame, two hours once a week, the balance in the group works extremely weIl.

This part of my life, and maybe yours if you’re reading this, is like being on an uphill trudge, wearing boots that rub my feet and finding I’ve forgotten to bring a plaster, or anything to drink. But being with the people in that room is like walking down a gentle, grassy, slope on a sunny and breezy day. Everything there is easy. No-one has expectations of me that I worry about being able to fulfil.

Out in the real world I sometimes feel very lost, like I’m a needle in my own messy haystack. Or a cloud in a muddled sky. I’m like a child who can either irritate or amuse, whilst being an adult who knows what it’s like to be irritated by that helpless child, and simply cannot bear to be cast in that role. Because I can clearly see this side of myself I apologise too much. I feel too ashamed of my incompetence.

Writing this I can see I need to learn how to be more resilient and kinder to myself. To be my own defender and at the same time not to be defensive. But is that even possible? Because of all these feelings of shame and incompetence, the people who attend or lead the group, in some aspects, feel closer to me than my family and friends who, in fact, I’m starting to avoid. I do feel rather sad about that, but when I’m with other people with dementia there’s never any need for me to apologise for what I’ve done or for what I’ve forgotten to do.

I’ve found the people who have known me prior to my dementia now treat me differently. But I guess it’s hard for them because in so many ways I do feel like a different person, less confident, less able to hold a conversation, constantly getting myself in a muddle.

At the group we sometimes have a laugh about those things but even if we don’t discuss it, it’s still really cathartic and healing to be with others who are in the same boat, instead of paddling on my own against an increasingly tricky current.

In truth there’s probably no need to apologise to anyone, but I’m used to being able to sort things out, to help others, to be a confidante, a friend, a counsellor (which I was in another life) and a helpful rather than a helpless person. And yet if I’m putting someone out; bothering someone who’s busy with their own life and trying to sort out their own problems, someone who might be tired and fed up, how do I deal with the results of my own shortcomings.

The losing things, the forgetting, the panic and anxiety? The sadness? (I cry so easily now! Do other dementia sufferers do that?) So as I read back over this I see I have many questions, and not so many answers. A lot of muddle and no solutions.

This dementia stuff, it’s all rather tricky, don’t you think?