I am defeated by dementia!

People tell me they don’t know how I cope. I say, ‘I don’t. Sometimes I throw up my hands and scream, ‘I am defeated by dementia!’

Most of the time you can still talk to mum and hold a conversation. It’s true you can have this same conversation over and over again but still, she is capable of having opinions and grasping logical ideas. She is for example very interested in the upcoming elections.

But then, suddenly you find yourself in the midst of a complete communication breakdown. It’s like there are these little whirlpools in mum’s mind where narrative logic breaks down. The first times it happened I got incredibly frustrated, ‘So thoughtless!’ I ranted to myself. ‘So selfish!’

The second time, it happened I got so angry I thought I was going to give myself a stroke, I swear I felt something pop in my brain. ‘So thoughtless! So selfish! Can’t she see this is stressing me out? Can’t she see that I’m really tired? Doesn’t she care?’ I tried to reason with her and it was like talking to a brick wall.

But I’ve realised, there’s absolutely no point in getting my knickers in a twist. Dementia’s like being on a boat that’s sailing peacefully down the river, going with the flow as it were. Then for no apparent reason, the boat ceases to go forward. Instead it’s caught in a whirlpool, going round and round and round. And it’s like that with mum, she gets these little whirlpools in her brain and she just can’t think beyond them.

For my own sanity and well-being, I have to learn to recognise when we hit one and learn to walk away without losing my cool. Because it’s quite clear, these whirlpools are only going to increase.

Mum sees a Golden Squirrel

Last week Mum saw a golden squirrel in the garden. She said it looked beautiful, gambolling around on the lawn. She says she called me to come and see but I didn’t hear her. A pity, because I would have liked to have seen this fabulous creature. I did wonder if she had been seeing things but there are often squirrels in the garden. I thought perhaps it had been a genetic mutation and reserved my judgement. ‘If it’s living around here,’ I said, ‘I expect we’ll see it again.’

The next day she cried out, ‘There’s a donkey in the garden!’ This time I was there to see that the garden was empty, but I knew there was no donkey. Of course there wasn’t! However mum saw it walk through the fence on one side, across the garden and through the fence on the other side.

Later she said ‘it wasn’t a donkey but a Shetland pony, golden with black, brown and white markings. It was lovely.’ That evening there happened to be a Shetland pony on TV. Mum told me ‘that one is the same as the creature I saw in the garden, except the one I saw had more markings.’ She described the markings to me quite clearly. This is someone who has no short term memory, but she can clearly see this horse in her mind’s eye.

Hallucinations can be a symptom of urine infections and mum is just recovering from one. When the District Nurse came she remarked on how much brighter mum seemed. I agreed but I had to mention that mum had seen two golden creatures in the garden. The nurse ran some more tests but so far everything seems clear. And in a way I’m pleased because seeing these two creatures has made mum feel quite blissful. It’s as if she’s had an epiphany.

When she speaks of the two sightings her face glows. ‘They were lovely. The little horse, it came from there, it went there, it was beautiful.’ I said, ‘Mum you do know it wasn’t real, don’t you?’ ‘What do you mean? It’s real to me; I can see it in my mind.’ ‘Okay, what I mean is – you do know there wasn’t really a pony in the garden?’

Mum assures me that she does know, but it’s quite clear that, on some level, she feels that it was real. In fact these hallucinations/ waking dreams/ visions/ whatever/ seem to have been the best things that have happened to her for a long time. They have made her feel quite blessed.

I embrace my inner bag lady.

The carers get my mother up and dressed. By the time she sits in her chair, her hair’s combed and her cardigan neatly buttoned. But I’m often still in my pyjamas. I don’t sleep in them: I put them on in the morning because they’re comfortable and easy to wash. I don’t want to spoil my nice clothes crawling around wiping up mess, cooking, cleaning etc.

Besides, I can’t be bothered; no one’s going to see me. A couple of times there’s been an unexpected caller and then it’s been embarrassing, but most of the time who’s to know if I’m still wearing my PJs and some old t-shirt at 5pm. I’ve checked out the neighbours. They wear tracksuits, comfy slippers and polyester slacks. None of these are my bag.

A few months before I moved in with mum, I was talking to an old school friend about how to look stylish at 60. We wanted to wear what we’ve always worn and we also wanted to keep our hair long, but this made us look a bit like ageing rock chicks. Recently I rang my friend to see how she was. She said she’d had flu and was feeling like a cross between a rock chick and a bag lady. After some hesitation I admitted that, these days, I am pretty much a full time bag lady.

When I was young, there was a film called ‘Woman in a Dressing Gown’. The phrase held a rather seedy glamour. The implication was that a woman who didn’t get dressed till the afternoon must have rather dubious morals. ‘Woman in her Pyjamas’ doesn’t have quite the same ring to it. But the idea of just sinking into a sort of lazy slothful abandon is strangely alluring. I mean, I’m hardly a sloth. Full- time caring is not a slothful activity but I do know, not only will I not see anyone at home, it’s very unlikely I’m going to bump into anyone interesting as I trudge to the post office, the chemist, the local supermarket. And then trudge back, lugging a load of shopping, no doubt with a rather harassed expression on my face.

When I lived in the city, I wouldn’t consider leaving the house without lipstick, earrings and perfume. But round here, I think you stand out if you make an attempt at glamour. So, when I go to the local shops, I don’t bother to put on lipstick, I just pull on a pair of jeans and put a coat over an old t-shirt and cardigan. (Of course, during the winter that was okay as a coat can cover a multitude of sins, now it’s spring I’ll have to think again.).

I’ve always said it doesn’t take any more effort to be nicely turned out then to look like a right mess. I still believe that but I’ve ceased to care so much. My inner bag lady – who I realise has always been there lurking in the wings – whispers seductively in my ear. Why bother to make that tiny bit of effort? Who will care? And those blue fluffy slippers are so warm and comfy.

I guess I should just relax and give into it. As long as, if needs be, I can still turn myself into an aging rock chick without too much trouble!2015-03-20 16.30.27