A loving journey with a mother’s dementia… and occasional humour. Part Two
(This post is 1000 words, a ten-minute read)
The photo, below, shows my final attempt at an ‘ark’, as we came to call them: a place of refuge in times of extreme storms. The idea of the ark was born of the need to direct my mother to a point of safety and temporary sanity when the storms hit.
The refuge from the storm, the ark, was the presence of money. Just a small amount of money – typically, ten or twenty pounds. Enough to buy bread, milk and a few other staples to tide her over before I paid my next visit. The phone call, often in the middle of the night, told the familiar story: “Steve, I’ve lost all my money!” Then, there would be a pause. “And I’ve looked everywhere… It’s been stolen, again.”
The ‘thief’ was my brother, poor soul. It was obvious, her mind said, he was the only other one with a key. A year before, the thief had been an old friend who lived nearby. This kindly lady had offered to keep an eye on the house when we took mum away that year. We lent her a key, which, from my perspective was a secure and reassuring thing, only to find that mum had turned on her and decided she was ‘unbalanced and vengeful’.
Anyone with experience of the elderly and dementia will recognise the pattern. When you love someone, dearly, it’s a tragic thing to witness, but then your deeper caring – beyond the sentimental, kicks into action, and you realise the need to devise something clever to help solve the situation.
We changed the locks to prove that she was safe. She accepted the logic and slept well for a week or two. Then my brother ‘started stealing from her’. Looking back, that should have been obvious: he had a key, too…
I have a key, of course. But I’m the trusted one… for now. One day, when all else is dim, I’ll be a thief, too.
You can watch all this from a spiritual perspective, too. It’s vital to do so. What the poor ‘self’ is going through is the inexplicable theft of ‘itself’. No wonder it’s so traumatic. No wonder its shrinking world is populated with thieves.
At first, we tried a small handbag for her cash, with a space reserved for it on the bookshelf, behind one of her favourite CDs. “I hate handbags,” was the response… She didn’t use, it, instead putting the notes and coins, loose, into her coat pockets. After I had taken her out for the day, I’d find a twenty pound notes on the floor of the car, sometimes on the pavement outside the car.
Eventually, we gave up on any idea of a portable ‘container’ for the money and decided that a safer place to put it in the house would suffice. Bernie and I live sixty miles north of mum’s home in Bolton. My brother is much nearer. We couldn’t be there in a hurry, but she was always visited at least once a week. My brother used to make it twice, but he’s now a ‘thief’, and not welcome.
The storms began to happen. At first we didn’t see the pattern, just the crying in the night on the telephone when she woke up to find that her ‘stuff’ had all been moved around by a malign presence. Oh, and all her money had gone, again: fifty-ish pounds at a time. Later, we found out that what had been moved around were small things like her medical supplies (she has a stoma). Sobbing, she would tell me that it was the work of the person she now called simply ‘the thief’. He was not hurting her, just trying to make her miserable with his malice and mischief.
It was the kind of paranoia that goes with vascular dementia. There was no cure… just some advice with the worst of what to expect.
My brother finally had it out with her, pleading, uselessly, that she see where ‘this’ was all coming from. She spent a half hour spitting vitriol about his whole life. He’s still deeply affected by the call. Cut off from her and unable to help us, except when mum’s not there. Dementia is more vicious than you were expecting. It’s the real thief in the night, the one that steals minds and pasts.
The Auden pamphlet was the last throw of the dice. Hidden in a different part of the house each time; a place that only I knew. I could direct a panic-stricken mother to the location of ‘the ark’, knowing there were both spare keys and a couple of small denomination notes. Enough to get her through to my next visit. We made sure there was always enough in the fridge to feed her though the week.
It worked for three weeks. Then, one morning, when her regular cash from my last visit had been stolen, again, she rang up, desperate. I directed her to the location of the ark… but when she got to it, that too had been pilfered. Keys and money gone, she said. Such a determined thief.
She’s with us, now. There was no choice in the end. She’s warm and fed and safe. No-one’s stealing anything from her, anymore. But when you explain the contrast between this and her former existence she just smiles and says of the thief, “Ah, but you don’t know him like I do.”
The thief and his wife have spent two weekends cleaning out the mess of her Bolton home as much as they can. We’re waiting for a social service assessment of her from the Cumbria authorities.
She has a new, local, doctor. The former Bolton doctor was brilliant and a real friend. “Tell them that I said your mum needs 7×24 care,” she said to me. “Don’t take any nonsense. I had to do the same with my own dad. It’s dreadful, but you need to stay sane. Let me know if I can do anything else to help.”
Most of the time, mum’s very happy. She paints and watches programmes on BBC iPlayer, especially those about astronomy. She loves it but doesn’t remember any of it. She broke her lower spine falling out of bed a week after moving in. I’ve told the story in the first of these blogs. She can walk again, now, but only short distances. It will take months for her to recover her mobility… if ever.
It’s a journey we’ve long known was just around the corner. We’re all living longer and our brains are decaying before our bodies. The journey is shocking because you keep looking into those eyes you love and assuming that some deeper level of handholding plus logic will make some small difference. But it seldom works.
The handholding does, though… always. Sometimes, a held hand can reach beyond time and place and circumstance and outrun unreasonableness.
And be remembered…
Other parts of this series:
Part One, This is Part Two.
©Stephen Tanham, 2021.
Stephen Tanham is a Director of the Silent Eye, A journey through the forest of personality to the sunrise of Being.