Why do I write blogs about dementia?
Why do I want or choose to tell people what it’s like? The ups and downs.
Is it just navel gazing?
And, for that matter, is what I write about just about dementia, or is it all the rest of my long term disease conditions?
There are two guys I frequently meet when walking Lupin. S thinks he may have dementia since we have been talking about it recently. One GP (you know, that one) told him of course not because he passed the simple test. But he knows better…something is wrong. So I told him to try a different GP.
B, on the other hand, doesn’t see my dementia therefore thinks I cannot have it. I can talk, after all, lucidly, about dementia! And Brexit. He also blames immigrants and muslims for everything! That’s a bit trying so I try to avoid him.
Now, the point is…
I write about living with my disease because I want to help others understand what it’s like.
When people I meet say ‘oh yes, that happens to me too’ I think I may have helped them forward.
When someone says ‘you can’t have dementia if you can have a conversation like this’, I think, well ‘you don’t look stupid either!’
So I write for everyone to improve their understanding.
I have just been away for a few days to attend a wedding. We booked a house for us and our grown up children.
It was down in lovely Monmouthshire, near Abergavenny, where I spent many school holidays walking up hills, having camp fires, slashing at bracken and climbing trees. I loved that area, and still do.
Hence, I was really looking forward to a week there.
We arrive and the house is fine, on the side of a hill of old oaks and chestnuts.
The others arrive. And all is fun and welcoming.
Then I find I have to go outside on my own for a while, in the evening. I cannot sit inside and listen to their talking. I feel I cannot get into the conversation even. I feel I am being excluded because I cannot keep up.
So I get a bit annoyed and withdraw.
Next day I begin to feel a bit confused in the new house. Not sure where things are. Up a stair, down a stair, round a corner, squeeze past a chair…frightful noise of chairs scarping on the tiled kitchen floor. Send me mad.
And when I show that it makes me mad I get told not to be silly and annoying.
So I withdraw outside again. And fume. Because they DON’T UNDERSTAND.
That evening I cook a meal. It’s my way of keeping out of the group conversations and doing what I enjoy, with a drink.
Well, where are the pans? The knives? The plates? How do you use the electric cooker? There isn’t enough prep space…etc, etc.
And I get annoyed. Because I cannot just get on and cook.
Then the roasting tin doesn’t fit the oven. Wonderful.
And I burn my self twice using oven gloves (supplied) that are worn thin.
So I start swearing and cursing.
And throwing things around.
And get steaming bloody angry and noisy.
So everyone else gets upset and annoyed with me. And they try to ignore me.
We eat, and they go in the other room.
I sit and drink, listen to some music, read my ipad…feel bloody miserable…
And I storm off to bed, slamming the door.
Next day is the wedding. And I’m not in the mood for it.
I feel really exhausted after not sleeping well. And bad dreams. And unfriendly looks from my family after the night before.
I really don’t want to go to this wedding. They know that. I know that. But I have got to, I am told. Just behave and put up with it, they say.
I try. I do try. But I’m feeling tired.
And there are 130 people and I only know 10. And have very little to say to more than five. And I’m trussed up in a suit and tie.
We stand around afterwards. We exchange pleasantries. I stand on the edge and smile at people.
Then off to the party in a marquee. Lovely setting, truly.
But…more smiling and pleasantries, drowned by loud music. So I withdraw outside.
And sit and drink and watch the world go by. But I know I’m being unsociable, and probably rude to the guests and hosts. So I feel guilty.
And oh so tired.
Then the dreaded part. Sitting opposite people I vaguely know but with whom I have almost nothing in common. And one is a priest! (Moderate language!) And I can’t hear what anyone is saying.
Christ. This is a torture. I turn to another guest I know a little, and ask an introductory question that I know will lead him on for hours. And yes, it does. I nod and grunt and he whines on.
The world is full of people who know everything and cannot stop themselves telling you. And I’m too polite to say stuff off.
By 9.00 I am finished. My head is bursting. I almost fall over on the uneven, slightly dazzly matting. I have to escape. So I go for a walk through their garden. Peace at last.
Luckily I am not the only one who wants to leave early so I’m away by 10.00.
Of course, then there’s the sitting outside with a drink, chat with son, and feeling angry that I have just been subjected to an ordeal I could not stand, and did not want.
Next day I am utterly exhausted. All my body has stopped. My blood pressure drops. I feel ill. And I am still angry. That I cannot go for a walk. That I wasted yesterday. That I cannot do what I used to do. That my body is broken.
And for two more days I am utterly out of it.
My mind is torn. I am imploded.
All I want is to sit in my real home and watch the clouds and the butterflies drift by. Sleep in my own bed. Know where everything is.
Take life at my own speed and just recover.
So we come home early.
If you are still reading this let’s look at the lessons.
Remember, dementia results from brain disease. Physical, organic disease. It’s not a choice!
A person with dementia is not just the person you see when you meet them now and then.
A person with dementia can and does get freaked out very easily, sometimes quite unexpectedly.
A person with dementia can get very tired quite suddenly and can take days to recover.
Most people with brain disease have other diseases too, which make everything worse.
Changes of surroundings are difficult to adapt to.
Noise and distractions can incapacitate you.
Dementia can lead to reduced capacity to control and moderate language and actions.
Dementia can allow hidden personality traits to emerge that may not be pleasant.
My philosophy, if I could only follow it…
Stop doing what you SHOULD do, what is EXPECTED of you.
Do what suits you, and what you enjoy doing.
Avoid what upsets you.