Providing Care for Mum

[moochops]

Hi everyone,

My mum was diagnosed with Alzheimer's late last year. At the moment, she doesn't have any issues with getting ready and preparing meals for herself (although she refuses to eat anything other than cakes and biscuits, and will often spend days refusing to get dressed).

Since getting her diagnosis she has been offered Donepezil, but she refused to take these (even with a Memribel device to remind her to take the tablets). The doctor who initially prescribed the medication has now refused to continue prescribing them to her as he felt she could not be trusted to take the medication sensibly and safely. His recommendation was that my mum requires either live-in care or a place in a nursing home (despite her ability to look after herself in other ways).

Social Services initially offered her some support to help her get out and join local groups, but this offer has been revoked as they don't have sufficient staff to support her (staff have to present in pairs as she has previously made some horrible and untrue accusations against individuals trying to help her). I see her every day and bring groceries (always wasted unless it is a sweet treat), and try to manage what appear to be strange daydreams/nightmares that are clearly not true, but very real to her (people climbing in at her windows to taunt her, random people visiting her just to be cruel and horrible to her).

I feel like I have spent the past 6 months trying to get assistance for her only to end up back at square one with a mum who refuses to look after herself, rejects any offers of assistance, and is seemingly happy to starve and smoke herself into a premature death. I see her every day but I am struggling to manage the situation. She has suffered from depression all of her life and I feel like I have spent the past 52 years trying to keep her alive. She lives alone and I have no siblings to share my care responsibilities with.

Sorry, bit long, I just needed to share.

Thank you so much Huckleberries73. I think I just had one of those moments when I needed to shout into the void! To answer your question, yes she has always been a little bit difficult - I have previously posted and gratefully received sound advice from the Mumsnet hive mind relating to this issue.

It helps to know that other people understand and that my frustrations are normal. I will contact the local Alzheimer's support group, thank you again for replying xx

So sorry you’re going through this, OP - all you say sounds all too familiar to me. It’s so hard when the person refuses badly needed help/carers, but you know or suspect (as usually happens sooner or later) that they’re not safe to be left alone any more.

When my DM got to this stage, we arranged a care home place without telling or consulting her - she’d certainly have refused to go, but by then the need had become urgent - and none of us lived close by, so popping in daily just wasn’t possible. But TBH what she needed by then was 24/7 care and supervision - once a day wouldn’t have been nearly enough.

Some people will say that in such cases you simply have to wait for some sort of crisis to occur, which makes the decision for you, and I’m afraid it’s probably true.
However if you’re burnt out and feel you just can’t go on supporting her, the usual advice is to tell SS that you cannot do it any more, and that your DM is vulnerable and at risk - apparently these are the buzzwords that do help to initiate action.
All the best.

Thank you. We did discuss moving her to a flat that would be like a warden-controlled place but with a few extra opportunities for care (if/when required). It seemed like a perfect solution as it would still allow her some independence, but she was absolutely furious and the suggestion caused a row. The fact that she can put up such a vitriolic fight is always a weird kind of comfort - it suggests that she is more capable than we think.

I suspect that if she were to spend time with other people she would be doing herself a lot of good. She lives next to a library and a church that both run activities every day, and there are social activities organised at the flats where she lives, but she won't engage (even with someone accompanying her).

It is difficult, but I know there are things I can change and things I cannot. Thank you, it really does help knowing that there are others out there who know what this is like. Thank you ❤

It is so hard but if you can make peace with the things you can't change then that's a great step forwards for your own equanimity.