As mum’s Alzheimers progresses, an unpalatable decision looms nearer

Alzheimer’s disease brings many conundrums in its wake. Some personal, some practical, all imponderable in one way or another. When I visited yesterday, I was confronted in different ways by two of them. My somewhat despairing tweet read, “Why, when I know my mum can’t help it, is my default response to her dementia one of irritation?”, and many of my good Twitter friends sent encouraging and guilt-dispersing responses for which I was most grateful. On reflection though, worrying about that puts far too much emphasis on me and my feelings, which are ultimately irrelevant. This is not about me. It’s about my mum, what’s best for her, and when what’s best might be in terrible conflict with what she wants. It’s the practical things that need to take precedence, and need to absorb my energy and intellect, not my personal failings or inability to deal with things or put them in perspective.

So what was the practical conundrum that came into sharp focus yesterday? It’s digital switch-over in mum’s neck of the woods, and analogue broadcasting is about to cease, and for some channels, has already ceased. My brother went to the local TV retailer to ask what he needed to do. As he lives sans télé he’s not in a strong position when it comes to knowing anything about the issue. He was told – with considerable restraint given that he was asking someone who makes his living by selling televisions – that it wasn’t necessary to buy a new set owing to mum’s great age: a government scheme would provide her with a new aerial and digital decoder for nothing. So he called the organisers of the scheme, and they confirmed it was indeed so. He told them on no account to contact mum directly as she’d be totally confused, but rather to arrange their visit through him. They agreed to do so. It was with some surprise then that he went round to mum’s to find the old aerial propped up by the front door. He asked her if anyone had been round. No, no-one had called. Inside he discovered a hole in an internal wall, a new digi-box, and a set of instructions. This must all have happened within the previous hour, and yet mum had no recollection that someone had been into her house, clambered over the roof, drilled a hole, and given her a quick lesson in the wonders of digital technology. My brother knew that this had happened though, because the forgotten visitors had left a “quality control sheet” on which they’d ticked a number of boxes reassuring the world that they had done all this, provided the lesson, and that my mum had been entirely satisfied with the service thus provided.

Except that she wasn’t. My mum insists that television is of no interest to her, and that she never watches it anyway. And if she does, she only ever watches BBC1. Only the last bit is true. The installers had left the television still only receiving the remaining analogue channels, among which BBC1 is not present. In place of BBC1, my mum was entertained by Brownian motion and unpleasant hissing. For all that this might frequently be an improvement, my mum was not impressed. My brother’s profound ignorance of all things televisual rendered him unable to assist. He told mum that he’d seek advice. In the meantime, she’d not be able to receive BBC1, but that wouldn’t matter, would it, as she never watches the telly?

Well, apparently mum’s need to watch the telly is greater than she’s prepared to concede. Within hours, my brother was inundated with calls from concerned neighbours and friends. My mum was standing at the garden gate, stopping complete strangers, and telling them that her TV wasn’t working. She invited these unknown passers-by into her home, to see if they could fix the offending equipment. Some of them even left helpful notes about what they’d done, and what they’d not been able to do. Fortunately, after some messing about, I was able to sort it all out. My mum now has 100 channels and more, of which she’s not interested in 99. But at least, when she turns on the telly, her beloved BBC1 appears. I’ve hidden the remote control. She’s no idea how to use it, what it’s for, or why it exists. Random pressing of the buttons of this alien life-form is unlikely to be helpful.

And so this small crisis is over. But it will doubtless be replaced with another, and another. It’s hardly a good idea for a confused 91 yr-old to be inviting strangers into her house. It takes only something such as this to disturb mum’s routine, and lead her into risky and potentially very dangerous territory. At the moment, she lives alone with visits from carers (who deal with her mountain of probably pointless medicines), and my brother’s regular watchful attendance. She’s happy there, if happiness can be said to consist of constant wandering from room to room, of endless adjusting of cushions, of repeated visits to the loo just in case. But the rooms she visits are her rooms, the cushions are her cushions, and the lavatory seat her lavatory seat. I’ve visited too many homes for the elderly, seen too many old people staring vacantly out of unknown windows, listened to too many desperate expressions of fear and confusion, observed too many strangers tending too many weary, empty husks of humanity, to want to inflict such modern torture on my mum.

But for how long? When do the risks of everyday life for a demented old lady become too great to be permitted to continue? Where does our duty lie in trying to balance today’s happiness against tomorrow’s risk? What would we have felt, what would the inevitable inquiry have concluded, had one of my mum’s unexpected and unknown amateur television engineers bludgeoned her to death, and stolen every last remnant of her possessions? I don’t know. I really do not know.

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6 thoughts on “As mum’s Alzheimers progresses, an unpalatable decision looms nearer

  1. Oh this is the minefield we all hope and pray we never have to wander…No easy answers, I’m afraid. Wish I could be more helpful.

  2. Brilliant post – – my mother is 87 and heading slowly but inexorably in exactly this direction. You have summed up my feelings exactly. Superb – thank you!

  3. Altzheimers is such an evil disease. My mum had Altzheimers and my dad and I had to do shifts in looking after her. After a frightening experience whilst she was in hospital she vowed that she wouldn’t go back there again. When she was first diagnosed she said that she wouldn’t be put in a home. She was happy at home. My dad and I found solace in the Altzheimers society website called talking point. We could talk about things to other people who were going through the same thing.

  4. I’ve been down the same road with my mother. It’s hell. The only advice I can give you is that when the time comes when maybe she can no longer stay at home, you will know. You will know because things will have got so difficult that there really won’t be a choice. You will suffer agonies of guilt but also relief that she is safely being cared for. There are good places out there. Barchester are opening ‘Memory Walk’ wings if you are lucky enough to have one near you and can afford it. Be wary of part-time helpers from agencies – they send someone different and it is is very confusing.
    I’m so sorry you’re going through this. I hope writing about it helps.

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