Alzheimer's Disease

charlie clown · June 10, 2020

First off, I’m not posting this for sympathy etc. Instead I wanted, on the one hand, to post something in order to offload and, on the other, in case anyone else is dealing with similar it might help to share a few experiences. Sorry if that means this comes across as tediously self-indulgent if you’re not in the dementia Venn Diagram. And further apologies that this is a long post. As I say, I’m just venting really.

Anyway, basic situation is that my wife, Anne, a retired nurse, and I decided late last year to take on the care of my wife’s mother who, as of November last year, could no longer care for herself due to advancing Alzheimer’s. Her dementia had been steadily increasing for two or three years before that but only really became difficult to manage when her husband, my wife’s dad, fell ill during the second half of 2018 and eventually died just before Christmas of that year. After a brief spell in a care home to stabilise her, she then went and stayed with her son, my wife’s brother, over Christmas last year but since then she has lived with us.

When we agreed to her living with us the plan was that her son, my b-i-l, would have her back for a couple of weeks every six-to-eight weeks or so, so that we got a break on a regular basis. Within a couple of weeks of her arriving at ours he told us that he had no intention of having her back under any circumstances. So we are left having to care for her full-time. I am f***ing furious at him for completely abandoning both his mother and pushing all of her care on to my wife as well as the total 24/7/52 disruption to our home life that that has entailed.

Since lock-down this has of course become even worse because we have now had ten weeks or more of being more or less complete prisoners in our own homes and with no respite care options available at all because all of the local care homes are closed because of Covid-19.

So we just slog on. She is noticeably deteriorating on something like a fortnightly basis. The sort of things that we are seeing and dealing with are incontinence; complete inability to do even basic tasks without constant supervision (dressing, washing, brushing teeth etc.); paranoia (“you’re selling my house behind my back”, “money’s gone missing from my purse”);; delusions (“I’m leaving now because I’m going to see my father” - he’s been dead thirty-odd years, “where are the carers who were on duty this morning?” – of course there weren’t any, it was us); my wife is always being told that she is not Anne, she is someone else e.g. a carer or her own sister (she doesn’t have one); there are daily tantrums, insults, the constant repetition of the same conversations (always based on misunderstandings or hallucinations (“is that a lorry in the back garden?”, “how many children can you see in that tree?”); the inability to finish sentences, leading to constant frustrations in failed communications; endlessly waking up 6, 8, 10 times per night and disrupting everyone’s sleep… it just goes on and on. That’s not the full list but you get the picture…

I can detach a wee bit because I have my work to get on with so can legitimately shut myself off in another room for a few hours at a time, but my wife is living with it constantly with no escape, largely because her mum can’t be left on her own for five minutes otherwise she immediately starts getting agitated and starts wandering around the house. She is always trying to climb the stairs (which she can’t do without supervision because she is so unsteady on her feet). It’s like having an uncontrollable, adult-sized toddler that we are having to care for in every waking moment.

I’m hoping that after lock-down, as and when the care homes re-open, we‘ll be able to put her in one to give us some kind of regular break, but until then we have effectively completely lost control of our own lives because everything centres on her.

Because of the abuse she suffers from her mum and the sheer physical and mental slog of it, my wife has emotionally distanced herself to the extent that she is not looking at her mother as her mum anymore and instead is just treating her as a care case requirement. As awful as it sounds, our shared view now is that if she were to become ill and die, it would be a relief more than anything else. We would of course continue to care for her as best we can but if I‘m honest, for both of us, it feels like it can’t some soon enough. Her mum has a miserable life and it is making our lives miserable too. The ‘problem’ is that despite the dementia and the physical unsteadiness, her mum is in pretty good overall physical health, rarely ill or sick with anything else so this could potentially go on for another decade…

In short, it’s a horrible disease. The toll it takes is way beyond the person with the disease though.

And as an aside, I remember when Finding Nemo came out and Alzheimer’s ‘experts’ were saying how great it was to see a kind of positive and accurate depiction of dementia in the character of Dory. I think that is an utter f***ing travesty. It is not some kind of benign forgetfulness. It is a devastating and savage stripping away of the dignity and capability of a human being and a relentless and full-on attack on those who care for them.

As I say, I’m not looking for sympathy or anything, just wanted to offload and share a few realities of a horrible disease and situation. Thanks for reading.

Edited June 10, 2020 by charlie clown

Swan Red · June 10, 2020