I have a respite from the TV.

Last week, we both had a respite break. Mum went to a residential home where she has stayed before. I spent three nights at the Chalice Well retreat house in Glastonbury. I like to go there once a year, if I can. It allows me to process stuff that I can never fully process while daily life is going on. I can let my mind and my spirit enter those deep places where my true thoughts lie.

As always, Mum started to get anxious about going away. In fact, it was as stressful preparing her to go away for 4 nights as to go away for a couple of weeks! The morning we were due to leave, she got herself in a terrible state. I had to tend to her, clean up mess, change sheets. With a sinking heart, I rang up and cancelled my taxi to the station. But I had a sneaking suspicion it was all a case of nerves and indeed, she eventually settled down. Just before the paid carer was due to arrive, I ordered a second cab and tiptoed away.

By now I was running late. I had to get there by 5pm or there would be difficulties getting the key. The journey by public transport took six hours and at one point, my train was held up and I began to panic. I made it in time but I was very tired – and before I could rest, I had to walk down to the shops and buy something to eat. That night, I felt ghastly, couldn’t sleep – I decided I must be detoxing. The next morning, the first thing that came into my mind was: the television is doing my head in!!!

I don’t mind cleaning up blood and shit, I don’t mind the endless washing when mum’s wet the bed. I don’t like doing it, but I understand these are distressing episodes for mum – and part of the reason I’m living here. The interminable washing/shopping/cooking etc bore me, but I accept it’s an inevitable part of caring for someone who can’t take care of themselves. Her memory loss has been difficult to deal with, but this online course on dementia is helping me to cope. However, when I do get time to myself, when I’m not on deck as it were, that time is being contaminated by the brain-flattening, intuition-crushing effects of the continual blaring TV.

I didn’t own a TV before I came here. I did sometimes watch programmes on my computer but, as a rule, I prefer to listen to the radio, or music. Mum has the television on for several hours every day. She has the volume turned up so loud I can hear it even if I’m in another room. It’s a small house, and it’s impossible to get away from the noise. What’s doubly annoying, is that she often falls asleep in front of it. So I can spend an hour vainly trying to blank out the TV so I can read – and then discover mum’s not even been watching the programme! I have got headphones, but sometimes, I don’t want to listen to music or the radio – I just want silence!

There’s no hope of weaning mum away from something that has been her life-line for years so, the only answer would be to close the door of my room. But I felt that would be a cold, unfriendly act which would make mum feel abandoned. However, I’ve now reassessed the situation. Since I got back, I have been closing my door, even though I know it probably upsets her. And I am feeling so much better! Not only do I get to read, write and go online in peace, I feel like I’ve asserted my right to spend my evenings as I wish.

home 071The wonderful Chalice Well

The wonderful Chalice Well

I aim for high cognitive reserve!

A friend suggested I enrol on a free online course called understanding dementia, run by the University of Tasmania. http://www.utas.edu.au/wicking/wca/mooc

So far, I have completed two out of the total nine weeks and done the basic introductory sessions – and if knowledge really is power, then I’m definitely feeling more powerful! That’s to say, I’m finding it much easier to deal with mum’s lack of short term memory now I understand about the hippocampus – the section of the brain concerned with memory formation. It helps people order things that happen during the day and contextualise events.

So now, when mum asks me a question for the umpteenth time, I visualise her hippocampus malfunctioning. This intellectual understanding has helped me to keep my cool. I understand there is a physiological reason why she can’t remember what I’ve been telling her for several hours. I understand she really can’t hold a thought because a certain part of her brain is collapsing (well there’s probably a more scientific way of putting it).

When I had to state my reasons for doing the course I wrote: my father died of vascular dementia, my mother is increasingly confused – and I want to be able to recognise the warning signs for myself! I haven’t yet got to that part of the course, but I already know I must develop a ‘high cognitive reserve’. As I understand it, this means creating new pathways for information to flow between neurons, because the more alternatives you have, the greater the chance the brain can find other ways to pass information between cells if it becomes damaged by dementia.

Neurons in the brain build connections, adapt and develop as we learn new skills. Things like learning languages – or doing a course of study – are ways of creating a cognitive reserve. With this in mind, I decided to start speaking to mum in French – just simple phrases such as ‘I’m on my way’ or ‘do you want a cup of tea?’. She studied French when she was at school, in the early 1930’s, and amazingly she does still remember some of it and quite likes that she can work out what I’m saying. And it’s actually making those boring daily task more fun for me too.

A la prochaine!

Mum gets institutionalised

Mum and I have both had a respite break. I visited friends, met up with pals from Australia and Canada and old friends from uni. I ate out, saw exhibitions, went to museums, watched movies. I packed in everything I could and had a great time. But I also got a cold and a stomach bug – possibly because I’m a bit run down – and when I got back here I was very tired.

For mum it was quite the opposite! She’d also enjoyed her break. She’d stayed in a residential home where the people are friendly and nice. They like her and she likes them. The change did her the world of good and she came home lively and energised from having some company. But she’d also got institutionalised which meant she expected me to work even harder than normal. So, for a while, we’ve been at sixes and sevens.

For instance: she’s still able to manage her own medication. She has three eggcups, one for the breakfast pills, one for lunch, one for dinner – and she sorts out the right pills into the different cups. All I have to do is help her get the pills out of their packaging, which is difficult for someone with bent-up arthritic fingers.

But at the home, they dished out the medication, and now mum has forgotten how to do her pills. She can’t remember which ones to take, and then she forgets if she’s taken them. In fact, if I don’t watch her with hawk eyes, she’s likely to take a double dose – and with the amount of painkillers she takes, this would not be a good idea.

She’s not only got out of the habit of doing a few small chores she can still do for herself, she’s also lost confidence in her own judgement. Every five minutes she asks me: Shall I change my shoes? Shall I have a drink? Shall I take the pills? What TV channels shall I watch? To which I reply, variously: I don’t know/ It doesn’t matter/ No, mum, don’t do it /Mum, I told you not to do it / Oh, do what you like.

I know mum’s condition will never improve but I don’t want to hasten the proceedings by letting her become lazy minded. So I’ve been trying hard to get her back to doing stuff for herself. And things are improving, slowly.

However, there’s one issue on which I simply can’t compete. At the care home, they have a proper chef. And it seems my meals just don’t compare with his! Mum keeps telling me, ‘this meal is quite nice, dear, but it’s not as good as what they served me at the home……’ All I can do is grit my teeth and nod. ‘Sorry mum, but this is the best I can do.’

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.