Mum is falling apart and I don't know how to help

[tobyj]

Sorry, this is long. My DM (age 77) has been increasingly struggling for the last three or four years. She's got bad arthritis in her hands and feet which makes it difficult to walk far or do much. She's had ongoing, mysterious digestive issues, for which all tests have come back clear. She's become increasingly apathetic and socially withdrawn, as well as anxious. She has terrible insomnia. Her memory is increasingly failing and she was diagnosed with MCI a few months ago.

Today I had a really upsetting conversation with her, where she basically said she has nothing good in her life and doesn't want to go on like this any more. She bitterly regrets moving house a couple of years ago and blames a lot of her problems on that (now forgetting all the practical reasons for moving as well as the many things she used to complain about in her old house), and resents us (me, DSis and particularly DF) for encouraging the move. She said she's constantly arguing with DF about everything (acknowledging that they are both equally to blame for this, though also saying some quite odd things about him talking about her behind her back). She's fed up of feeling rubbush all the time but is angry at the doctors for making her have tests. For the first time she intimated that at least some of her physical symptoms are psychosomatic, and I suspect that she is either deliberately or inadvertently exaggerating some of her symptoms as a way of disengaging from the world. She became very upset but also quite aggressive while we were talking.

I tried to sympathise and talk to her, but every conversation is totally cyclical. I say I'm sorry that she's not enjoying her new house, but try to remind her of all the reasons they moved. I tried to explain that the doctors are only trying to find what's wrong so they can help, but she got angry again that they can't find anything wrong but also angry that they shouldn't be wasting their time on treating her because she's too old anyway. I tried to suggest things she might be able to get involved in to fill her days, but she says she doesn't want to, followed by complaining that she doesn't do anything any more.

I just don't know what I can do to help. Every suggestion of activities or hobbies or socialisation of any sort is met with reasons why not (but I think it's really withdrawal and apathy). Any suggestion of anything that smacks of elderly help such as walking aids to help her get out more is rejected out of hand because they're for old people - but in the next breath she says everyone's living too long and she wants to be dead. She's terrified of dementia, which is very probably what she's got the beginnings of. She constantly talks about her ailments, but doesn't want to have more tests or a diagnosis - she'll take a pill but won't engage with any kind of 'service'. She's already on anti depressants, which seem to have made no difference. Her memory and cognition are clearly getting worse and worse, which she's aware of and frightened of.

I just feel so helpless. My dad is really upset and worried, but also understandably frustrated. I talk regularly on the phone, but she's finding that harder now that her memory is going, and conversations are very repetitive - sometimes jolly, sometimes depressing. I try to talk to her about things, but whenever I feel like I've made a step forward, she's forgotten the conversation by the next time we speak. I work full time and don't live that near, so visiting more than every few weeks is not easy.

Does anyone have wise words or a similar experience? The grim truth is that I'm not sure there's much I can do except sympathise - her life is pretty rubbish, her cognition is likely to get worse, and the future seems pretty bleak.

Did she get any offers of support following her diagnosis? Does sound like she's depressed, may need titration of her antidepressants or to try a different one. Would she accept a social work review?

I would sort the insomnia first.

Chronic insomnia can cause all sorts of mood problems.

My DM has chronic Insomnia and jas ruined her life. drs do jack all for her and she has been left to it. Deapite constantly asking for help. She has also spoken quiet negatively about her life and not going on anymore. She is only 64 but has had this along with other issues the last 10years.

The accusations of your df talking behind her back may be part of a sort of paranoia that comes with dementia. They is not much you can do except be a listening ear and let her get things off her chest.

She's been trying to sort the insomnia for years - GP has tried everything they can think of, but nothing helps. The only thing that seems to work is the full on sleeping pills, but she been told not to take them too often as they're highly addictive (and she had issues with tranquillizers decades ago after a bout of PND and is very scared about becoming addicted).

After the MCI diagnosis the Memory Clinic said she was being referred to a Well Minds service, but she never heard anything more. She's never followed it up, as to be honest I don't think she wants to engage. I suspect it will recommend things like talking therapies and socialisation (just a guess), which she would run a mile from.

I suspect she would also run a mile from a SW review (her feeling would definitely be that social workers are for dysfunctional families). I could try...

Changing the AD medication might help. She does like her GP, so perhaps I need to try to get her to go back again. Trouble is, she's reaching the point of thinking it's all pointless and that nothing is ever going to get better, so she's reluctant to engage.

It's really shit, OP, but there isn't that much you can do. Your mother is elderly, in pain, feeling increasingly unwell, and not surprisingly she isn't enjoying life much. It is awful for her, and seemingly she isn't the sort to bite her tongue and fake a smile.

All you can do is sympathise, give her a hug and acknowledge that things aren't great, and try to find some medication for the insomnia.

@MixedCouple, you say your DM's insomnia started about 10 years ago, when she was presumably in her early 50s. Has she tried hrt? Insomnia in older women is so often caused by menopause.

And OP, I know your mum is in her 70s, but has her GP ever considered hrt for her too? Seems ridiculous to put someone on addictive sleeping pills when a bit of estrogen might sort it all out. She's in her 70s, very unhappy with life, why on earth not try it, what can possibly be the harm?

Im sure lots of people will be along with advice about what you can do. I’m here to tell you about what you can’t do. You can’t make her do anything. You can’t change her perception on life. You can’t make her happier. You can’t make her join a club. You can’t make engage with a service.

Stop trying.

Put the responsibility back on her. Remind her she has the power to change the situation if she wants. Put down boundaries and don’t take responsibility for her problems. Remind your dad to do the same.

You can love her and wish the best for her without taking responsibility for her situation. It’s futile because she won’t change you feel it’s your fault when it all in her control and you have no power.

Thanks for the suggestion, she's had a bit of history there. She was on HRT for years and years, and then she got a new GP who was horrified by that and took her off it. That did seem to coincide to some extent with some of her problems. However, she then tried going back on it a few years later, for a year or two, so she stopped it again. Maybe too late to make a difference?

@MixedCouple I'm so sorry your DM has been experiencing similar issues.

Thanks @Imitationzone . That sounds harsh, but maybe it's what I need to hear. It's very hard on my dad. He's actually a couple of years older than mum, but he's physically fit and very sociable, so this situation is really difficult. Mum is still ok to spend time alone for now, so he still goes out regularly to play golf and bridge, but I think he feels too guilty to go to more social events without DM (and almost embarrassed, as they would always previously do things together). I think mum increasingly resents the fact that he still gets out and about so much, while simultaneously resisting any encouragement to do the same. As well as her physical problems, I think a lot of the social apathy is exacerbated by the fact that she's finding it harder to remember names and follow conversations, so she's worried about what people will think.

@TheYearOfSmallThings you're right, it really is just basically shit.

@Charlingspont it might be contributing but it started after a bad accident where she fractured her Lumber and developed sciatica and chronic pain. Became arthritis in her back, shoulders, knees and hips. Has attended pain clinic all the injections and has had knee replacement which failed. She has been diacharged from pain clinic as nothing has worked and they can't offer anything else.

I have told her to try HRT as she has tried everything else. Not sure why she won't. She has been on string painkillers which caused serious complications at night black outs and atopped breathing. So they perscribe cocodomal and paracetamol only. She has gone private and used osteopaths and alternative medicine even cupping. Which brings temporary relief and then back to square one.
But thank you for your response.

The grim truth is that I'm not sure there's much I can do except sympathise - her life is pretty rubbish, her cognition is likely to get worse, and the future seems pretty bleak. Yes, that’s about it.

Don’t try to argue with her or use logic to make her view things differently. It won’t work, and will just upset her. Personally, I wouldn’t try to remind her of the good reasons for moving, just sympathise with how she feels. It’s rotten for your dad too, losing his life companion.

If she’s worried about dementia, remind her the things that seem to help delay it are exercise, getting a good night’s sleep, and socialising, and see if you can persuade her to sort those out. Remember to keep your dad in the loop. Also, get her to have a hearing test (you could start with an on line one) - if she’s losing high frequency hearing she’ll be unaware, because lower frequency sounds will be as loud as ever, but it’ll affect understanding of speech and hence cause reluctance to socialise.

She's already on anti depressants, which seem to have made no difference.

Start there. There are loads of different types, all in varying doses, so there should be at least one that will ease some of her symptoms. Chronic pain, insomnia, social isolation, anxiety, anger, everything you have listed could be helped by having a decent anti depressant. It won't be a miracle cure but it will help stop that vicious downwards spiral she is in.

Thanks again. @MereDintofPandiculation the problem is that two of the three things you mention (exercise and good sleep) are two of the things she finds it hardest to achieve (due to arthritis and chronic insomnia). It feels like such a vicious circle. She's been trying to sort those things out for many years, and nothing has ever really helped - but I'm quite sure you're right, and that the lack of sleep and exercise are making her cognitive decline worse. Like many elderly people, the social isolation during Covid has also, I'm sure, played a part.

I'll try to get her to see the doctor again to review the antidepressants, though I've also read information online about the limited usefulness of ADs in people with dementia (which she may or may not have). I wonder whether she'd benefit from counselling or CBT, but I very much doubt she'd be open to trying it.

@MereDintofPandiculation that's a very good point about a hearing test. I definitely think her hearing has declined, I just need to persuade her to get a test. She's got (another) colonoscopy on Friday (for symptoms that I now fear might be exaggerated), but once she's got through that, I'm really going to try hard to push her towards a hearing test.