I can see it. Hidden away. Just grey hints showing through between tinsel and glass and green needles.
Christmas. Thank goodness it’s over.
But now comes the black hole. Or black dog.
There was a page of ideas from the Alzheimers Society tweeted around in early December about what it’s like for people with dementia at Christmas. Things to do to reduce confusion and anxiety.
Good ideas. I hope they worked.
For me Christmas was a time of controlled but high expectation in the days before, and total emptiness immediately after.
This is going to be a difficult blog to write, and you might read it as a piece of self indulgent tear jerking. But I am doing it because, as I often say, if I experience this it is very likely others do too. And if it’s part of the dementia disease process I want to share it.
I want you all to know through these blogs what it feels like living with a diagnosis of dementia, from the start to, well, later on.
So Christmas Day comes, all my wonderful children are here with us, and we do the presents, the food, the drink. The neighbours come round and drink and joke. It’s good.
And Boxing Day arrives. Some other friends and my children’s partners come for the day. We walk, we talk, we drink and we eat.
And I am getting tired by lunchtime. Not sure what of. Could be eating, could be drinking. Could be talking. Could be smiling.
And I begin to withdraw.
Next day I am well and truly in a black hole. I feel exhausted. I feel miserable. I can’t smile.
And the next day the same. Someone calls for supper. I can’t raise a smile. Must seem very unfriendly. Don’t want to talk. Can’t think of anything to say.
In fact I sit in front of the tele and find the Swedish Wallander series, with subtitles and a very blurry picture. And I sit and try to forget what is making me miserable. But I am not sure what that is.
Yesterday the same. My wife goes out and I have quiet in the house for a couple of hours.
I try to get my head together. I go out for a walk. God I’m tired.
In the evening I get a call from someone I have known all my life, and grew up with. We speak a few times a year, meet when something happens in the family. I never know whether she will be up or down. Often down. I haven’t told her about my dementia because her husband died with/of dementia twenty years ago and I didn’t want to upset her if she was down.
She tells me lots about herself, her children, her stuff. When she asks me how I am I tell her about the dementia.
Well if you’ve got dementia I must have too. I can’t remember things, have to write it down, have to ask people what I gave them for Christmas. Then more about herself. And more.
I rather quickly wound the call down and said goodbye.
I was seethingly angry. I had avoided telling her in order to protect her from her own depression. And she did not express a single bit, let alone megabit, of understanding or empathy. Family.
Yes you can tell me that she couldn’t face something she had gone through once. But no, it was not there. It did not register.
And then I saw it.
Behind the Christmas tree.
A bloody great elephant.
And round it’s neck was a label.
All through Christmas no one had asked me about how it felt to have had the dementia diagnosis. How I was with my memory and things.
Cheerful George. Happy George.
There had been one or two jokey comments about forgetting things, not me, them.
And after Boxing Day I found that I was looking into a big black hole which was 2015 with dementia. That my memory, confusion, lack of balance would get worse. I might lose my driving licence. I already know that I am worsening back to how I was before I started Donepezil, which is said to give about 6 months relief from symptoms.
Black hole. Black dog. Whatever you call it, it is just nothingness at the moment.
And then last night I had one of my really bad nightmares (Donepezil induced) which was about my parents and sisters and others when I was a young.
Yes, you could say it’s depression. And it’s not uncommon.
You could also say that I, and others with dementia, especially early in the disease, need to talk about it, to be listened to. So we don’t feel when everyone goes home and we are on our own, and our lives return to the regular routines, that we are completely alone with our disease.
If you think this is a self indulgent piece of tear jerking I apologise.
But if you know someone with dementia, early or not, talk to them about it. Listen to them. Don’t shy away from the subject just because it’s a happy day or a day when you’re supposed to be happy.
Every day with dementia is a day with dementia. It’s a day knowing that it will get worse. And that there is nothing much you can do about it.
If it was cancer I’d have a good chance of beating it. Dementia? No chance.
I’ll try to “live well” again in a few days when activity starts again. In the meantime, I’ll wait for the light to improve.
And writing this is making me feel better too.