Mum is forgetting

My mother has finally said – out loud – that something is wrong. On the phone today she told me she got confused, and knew that her forgetting wasn’t the ordinary kind. I have known it for nearly a year, pricked into considering it when she told the doctor my father had dementia and made him go to the hospital for tests.

Their doctor also tested Dad with comprehension and spelling questions. He’s dyslexic, undiagnosed in his youth, had to develop strategies for any kind of spellings. When asked to spell “would” backwards, he put an “r” in every time. R comes before D in words like those, he said. The doctor worked it out, and came back with clear results from all the tests – nothing’s wrong, you’re fine, and your memory is pretty good for a man in his 80s. Mum was disappointed. If the problem wasn’t with him, it might then be hers.

When they’d described the problems they’d had – things that had been forgotten, appointments missed, names confused – it was obvious to me that the common denominator was Mum. She had been unusually fractious when anything went wrong. Her normal need for complete control was challenged by her forgetfulness and confusion, making her angry and bewildered. How frustrating: to be in charge all your life, then lose it. No-one really knew what was happening, and those – like my Dad – who usually went along with Mum’s queening carried on as if she was still in control… which made her feel more anxious, I think.

She knows that not being in charge isn’t how she wants to live. At this stage of life, having never adapted to anyone else’s leadership or wishes, she is realising that the life she’s known will end. She doesn’t want a different kind of life. On the phone today she said she hadn’t long to live. I don’t think she means that she’ll die, more that the person she is, is disappearing, and will – sooner or later – stop.

She’s fairly healthy, though unfit, so her body may survive the loss of its familiar spirit. I wonder how long a physical human animal can go on being without knowing who it is?


Switching on

My first time locking up the office and I forgot to set the answering machine. I had a checklist in my head, and skipped that part – the pressing of a single button. It came to me in the pool (swimming backstroke, length seven) like a light being switched on. Absolute clarity, no dithering ‘did I forget?’. I knew I hadn’t done what I was supposed to.

It would be just my luck that someone needed to leave a message before the morning. In the next couple of lengths I thought about my two options.

  1. Leave it and take the consequences: further confirmation to colleagues of my absent mindedness. It’s possible that the boss has already checked – phoning in from home – and called in after hours to sort it out.
  2. Go in and press that button. It’s on the way home from the pool, and it’s unlikely that anyone would see me skulking around the building, even after nine o’clock.

I decided to go in and switch it on – it’s only one button, no need to put on the lights, won’t take a moment. I could see the journey in my mind, exactly where I’d park, how I’d light my path indoors with my mobile, the switch on the office phone.

Then, listening to a radio investigation into Alzheimer’s before bed, I realise I’m home and didn’t go anywhere near the office. The plan fell out of my head completely. Then it came back with – again – absolute clarity, hooked out the the mental abyss by association.

The man on the radio is talking about neural networks, dysfunctional neurons… genetic predisposition of amyloidal plaque leading to cognitive deficits, families losing someone beloved and never getting them back.

I am losing myself, losing the parts of me I want to keep, that make me me.

Where are my keys?

Forgetting can improve health and fitness. True. Every time I have to go back to where I was minutes, hours, days before, to do the thing I’d forgotten, I get a little bit more physical exercise, and – and this is very important – I exercise my mental faculties and memories and, presumably, improve my memorising capacities. It’s what I want to believe, so let it be true.

In this category today were the following:

Arriving at the car and realising I’d forgotten the car keys, so returning to the house, find the key, unlocking the door and – immediately (yes, I knew exactly where I’d left them) – laying my hands on them. Then re-locking the door and going back to the car.

Another thing with the keys at work.

The same thing with the equipment necessary to do my job, remembering to go back and get it just as I was driving out the gate to travel ten miles up country. A couple of times, I’ve arrived in the northern depot without any of the equipment and had to go back to the start. It can feel as though every day is a potential snakes and ladders game, but with the potential of sliding off the board onto the floor, even before I start.

Then I forgot to put coconut milk in the Thai soup. The smell of my own breath alerted to me to something being wrong but it took a while to work it out.

Also, spelling errors. [Spekk, speek, speeling, spelling.] [altered, alerted.] [is, it, if.]

Again I wonder if a) some of this is normal ageing, b) I’m tired, c) it’s only memory, or d) something worse.

Again and again

This morning I made a cup of tea and carried it to my bedroom. There was already a cup of tea by the bed, slightly warm. It must have been there half an hour.

Later, feeling thirsty, I made another cup of tea and picked it up to carry it to my desk. I looked across the room, saw a cup of tea already there, untouched. I put down the new one, picked up the other. It was almost as hot, perfectly drinkable. It can only have been five minutes old, or less.

This happens often.

I don’t know if it’s common, ‘perfectly normal’, or even a function of tea-drinking. I don’t know if this shows how far I’ve already fallen.

I was once an excellent speller – I could see mistakes a mile off, and type without errors. I had compliments on my accuracy and abilities.

Now, every sentence contains at least one word I can’t get right first time.

[com. con. contin. caoni. contains]

[tie. tim. tie. time]

At least I notice. That’s something.



A goldfish swam past

Some years ago I was in bed for most of the time over six months, recovering from a severe illness that left me underweight, exhausted and almost immobile. My home was, literally, a building site. Walls missing, cement dust everywhere. When I first came out of hospital it took half an hour, in blocks of ten minutes, to climb up three flights of stairs to the bedroom, the only usable space.

For years, I’d been working full-tilt for 12 to 18 hours a day in several jobs, lots of creative activities, and achieved a lot. I crashed every couple of months, sleeping for whole days. Humpty in pieces. (Not good, don’t do it). I’d had chronic fatigue symptoms for a year before getting a fungal infection in my lungs; I imagine my immunity was low. After my chest cleared I went home to recoververy slowly, a little every day. Waiting for enough energy to do the next thing, my mind was more or less blank.

One afternoon, as weak winter sunlight reached my window, I saw a thought coming. It was a long way over to my right. I felt excited, anticipating. I could remember thinking holding ideas and feelings in my mind, turning them over, finding a new way of integrating them, formulating afresh. I hadn’t done it for months.

The thought came nearer. I couldn’t see quite what it was, but I knew it was a thought, and that I would have it soon. I imagined it as a little shining fish, swimming towards me.

It arrived.

I thought.

I remembered myself – it was the start of putting myself back together again.

And then, inevitably, it moved away.

I tried holding onto the thought but it slid away, sideways, to my left, flicking against the light. Within a few seconds I could not remember what it was. (I cannot now. I only remember the shape, the golden feeling it gave me).

The loss, despair, was devastating. It was how I imagine drowning, what the fungus filling my body had felt like during all those weeks when it grew out of control in warm damp darkness, covering every alveoli opening with grey-green matter. I wondered if I would ever think again.

It took a while, but I got back to some of my former capacity. I could feel the difference. I had lost some of the edge – the twists, the flights – that I’d had before.

It has taken much longer to accommodate to living with the loss. Old habits launch me into ways of thinking I was used to, used daily for 45 years. Every day now, I hit the walls, find my limits.

And now, too, I’m getting older, I’m more conscious of little blanks and blips. Not just the one where you arrive in a room without any idea of the reason for coming there. Other things happen too, which might be evidence of ordinary ageing that I haven’t heard about, but might also be Alzheimer’s, dementia, or something resulting from earlier life experiences. How would I know?

What I do know is that I need to record how much I’m forgetting, how many times it happens, whether I really notice the changes. I trust that at least for a while I’ll be able to read and understand the thoughts I can write about here.

I also recognise the need to tell someone what’s going on. I’ve asked friends and family to tell me if they notice me forgetting things, but they laugh and tell me I’m worried about nothing. It would be hard to tell them about most of what I notice in myself and neurotic. I expect that what I experience isn’t uncommon, but we don’t talk about it until things have gone so far it’s obvious to everyone. Perhaps someone reading this will notice things I can’t.

This blog is to record my progress, my aide memoire. You can tell me about your experience too, if you like.