Drawing back the veil over My Hyde.
I wrote this yesterday and have been wondering whether to publish it. It sounds as if I am terribly depressed, but that’s not it. It is a tale of two halves, growing further apart. And of bereavement…
I’ve got brain disease, I’m told.
My symptoms are described together as a dementia. Well, mixed dementia actually, labelled Alzheimers and Vascular.
You meet me at a conference or a small meeting and you probably think “really?”.
Like many others, I can focus my brain on the matters in hand, as long as I have prepared. And as long as I am not tired.
So I’m a cheerful chap to most people, talking cheerfully about living with dementia, smiling away, saying hello to everyone around.
And I do really enjoy doing that. I get immeasurable satisfaction and pleasure from giving talks, chairing meetings, and just being around positive people who also want to make a difference.
But you don’t see me at home.
I’m reminded of the Chris and Jane Roberts Panorama film. You meet Chris, when he’s at an event, or over supper afterwards (curiously often in Weatherspoons), and he’s also cheerful, and talkative. But at home we all saw how he is different.
When I go home I’m also different. And in the last couple of months I have become aware that my symptoms have become more socially isolating.
I can’t do noise, and my lovely Lupin’s barking really crashes my head at times. It is overwhelming. Add another dog or two when friends come, thrashing playfully around, under my feet when I’m cooking, and I just can’t stand it. So I shout. And use foul language.
Well I’ve always had a colourful vocabulary, but I’m far less able to control it in social situations now. It’s like before I started Donepezil, three years ago. That made a huge difference, and I took back control of my self control. Now though it seems to be going again.
In a meeting when someone is speaking off the subject, or telling me things I already know, or just being really boring, I get intensely irritated and impatient. I start slapping my hand on the table. I want to shout at them. I haven’t got time to listen to you if you can’t do a decent presentation, or have nothing interesting to say.
And so, at home, I find suggestions about how I might do something, like cooking, or hoovering, or some other mundane thing, intensely annoying. I feel, often wrongly, that I’m being criticised, and not being allowed to be who I am, and make my own decisions. And I shout sometimes, and I upset others around me.
I know some good friends who came to stay a couple of months ago found me difficult to relax with, and it’s taken me all this time to really understand why.
Why, indeed, would people want to come and spend time with a miserable, angry, foul-mouthed person? Even friends have their limits!
I am seriously impatient at home. If, for example, I can’t get my walking boots laced up at the first attempt, I just lose my temper. I shout. I’m furious.
I have simply lost whatever it is in my brain that is the dam holding back that fury, and it explodes out.
So here comes Christmas. Lah de dah.
Four days with family…and I do love them all and love to see them. I’ll want to cook, because I enjoy doing that. But only if no one interferes at all. And by the time I get to the table I’ll be tired and fractious, especially if guests aren’t all sitting ready as I serve. And I’ll sour the general spirits.
Perhaps I should simply go into another room and preserve my energy and state of mind. Keep out of the way.
I’m not the person I once was, and it’s hard to accept.
I am writing all this not out of a sense of self-pity, but because I am certain that there are lots more people who have the same sort of experiences and difficulties. And most people don’t know. I live by the rule that if I experience or feel something, it’s pretty certain that other people do too.
It’s not just Christmas, though this season does adversely impact many of us. It goes on and on. We get tired. We feel we have to go on smiling and ignoring our inner feelings of frustration and helplessness, as we watch others do what we used to do seamlessly.
The best social events now are short and small and quiet. I’m only now beginning to understand the need for that quiet room at good conferences, where you can just sit and be…quiet.
I don’t know about others, but I feel huge pressure to be cheerful and chatty when friends and family are around, even when I am not feeling like it. I’m afraid that if I’m miserable they won’t want to come back again. I’ll be just a person whom they’d prefer to avoid.
There is this conflict: is it my responsibility to take whatever actions or strategies I need to in order to be nice, cheerful George, or is it other people’s responsibility to change how they behave and what they do, to help me retain my self?
When I visit my GP I usually become cheerful George again. It’s as if I feel I have to cheer him up, and not load him up with my difficulties. How stupid is that?
In any case, a GP is not the right person for this type of conversation. An Admiral Nurse, yes. But, of course, we don’t have them here! A counsellor? Nah.
What about the memory service people? Their risk aversion is stifling.
I have a terrible distrust of most health professionals I meet. They may know their professional medical stuff, but they really don’t get dementia and its effects on people. So if I get invited to an annual health review, do I go? No. Because it’ll be a practice nurse who has no idea about dementia and who will simply say let’s do a blood test. Oh and you know about diet and alcohol so I don’t need to tell you that!
It has happened several times. So I don’t have any real faith left there.
I’ll go on with my thoughts and conversations with myself, and try to work through these things. It’s a lonely place at times, and it’s going to get worse.
And I’ll continue in January to give talks and go to meetings, and organise DEEP groups.
Because that’s what makes life worthwhile at the moment.
In the next three weeks I’ll have time to reflect and recharge. And maybe I’ll be able to draw the veil across on Mr Hyde once again.