Mum in cognitive decline. Dad in denial.

[spinachsalad]

I will preface this by saying I’m an OT and have worked in elderly care for years. This might make me recognisable but that’s OK.

parents are both 80 and in excellent physical health. Both still drive. Great careers behind them, intelligent… hobbies etc you get the picture.

2 years ago mum broke her wrist whilst out hiking. For some reason they didn’t go straight to A&E. Possibly embarrassed so waited 12 hours to be seen locally but I think by the time they got there it set off a chain of events…. She needed surgery but it was delayed. The pain relief was never quite right. She never really adhered to precautions about the sling. She’d make weird decisions about carrying a drink upstairs in her affected hand for example. I’d say use a teasmaid/wait for Dad but she would just do it anyway and not tell me.

she couldn’t drive whilst it was healing so I think the isolation was increased but she’d pay for taxis etc so she could get out without relying on lifts.

anyway

she started saying weird things in conversation- things that couldn’t possibly be true. She then started having difficulty recalling names, problem solving, getting lost at local familiar places…. Lost her car in a car park. Seems very dyspraxic too. Loads more but hopefully this paints the picture

after 18 months I raised it with my siblings who agreed about the issues. I then raised it with Dad. He is an opinionated man but obviously cares deeply about mum and is frightened of what this means. He didn’t want me to talk to her about her concerns. I left it for a while and then decided it was actually a cruelty to potentially miss an opportunity for diagnosis, medication and support.

mum didn’t disagree but basically seemed to think that dementia couldn’t possibly happen to her. She went to their shit GP who did the mme and sent her on her way. Nothing more came of it. They have changed gps recently. Mum is getting worse. I spoke to dad last week and he has his mind made up there is nothing to be done. I say there is. It’s infuriating as I respect that they aren’t asking me for help and support so really what right do I have to interfere in their life?

I saw them yesterday and it just feels so depressing. That we’re missing an opportunity.

ok I’m going to stop typing now as I’m starting to repeat myself (ironic).

I am happy to answer any questions but would love to chat through with anyone else who has ideas. Thankyou.

Sorry one other thing. Mum has massive sleep disturbances where she wakes up having had horrible nightmares. Thrashing about.

Dad now has his own bedroom so they both sleep better.

when I discussed with mum about what this might be she said she’d googled it and the only option was surgery. I have no idea what she googled. I reassured her that nobody is doing lobotomies on 80yos having nightmares but it was such a weird conversation

I’d try speaking to your dad again. He sounds like he’s acknowledged there’s an issue but is currently coping well. Maybe raise with him that preventing further decline would help them both remain independent, but that ignoring this completely could make things worse further along. He clearly cares deeply about keeping the status quo, so reiterate that this gives him a much better chance of doing so.

I’ve recently had to have an intervention chat with my 80 yo mum about her ability to look after my very poorly 83yo dad. She didn’t like me for it and has dug her heels in…but I’ve said it now and I’ll remind her every time she feels overwhelmed.

It’s an awful thing to acknowledge the switch when you become the parent of your parent. To make this less awful, I tell myself this is what a good parent would do. Deep down I know this is a sort of grieving process, which is why it’s so difficult to approach.

Thankyou so much.

when You spoke to your mum did you plan how to approach it or was it more organic?

Sadly, I think this is all too common (I work with the elderly too and several have dementia).

Mum is now 8 years into her Alzheimer's journey and my dad sounds very similar to yours, he is very opinionated and dead set against anything we suggest to make their lives better, this has been a continuing story throughout mum's illness, which makes life so much harder than it need be.

We (sister and I) first noticed mum was struggling around 2 years before her official diagnosis, we kept having conversations with dad but he was in complete denial for a good year, when he eventually agreed mum should see someone about it the GP also faffed about for 6 months saying it was this or that and then a further 6 months on a waiting list before mum eventually got her assessment, brain scan and diagnosis.

All you can do is continue to monitor you mum and maybe keep a diary of all the things you notice and present it to your dad.

I think a lot of their denial is from being scared, lets face it, dementia is a wicked and evil disease and evokes terror in most of us.

Good luck op, I hope you get somewhere with it all soon and wish you all the best if your mum does get a diagnosis.

I have a few sets of elderly friends as in they are all 7-10 years older than me so late seventies early eighties. There is a range of problems: dementia, Parkinson’s, recovering from strokes/heart attacks and general decline. I can tell you what they all have in common:
Deal with the emergency as it happens, and then carry on as normal , complaining of course, and be in TOTAL DENIAL that anything could be proactively managed better.
My suggestion to you would be to be helpful and friendly when you have the time/energy/ bandwidth, don’t sign up to be their staff, and let them get on with it.

These are such lovely comments. I feel better already. Thank you so much.

My mother is 88, frail, with poor mobility and early cognitive decline. The refusal to do ANYTHING proactively drives me bonkers. I’m glad I’m not alone. She will not wear a falls alarm, will not have care although she desperately needs it and she has plenty of money … it’s just lurch from crisis to crisis .

I also get nowhere with my dad when trying to broach the same topic re my mum. She does have carers coming four times a day for a host of other issues and she is immobile, so they do have support and she can’t come to too much harm. But I was hoping he’d seek support in case it meant they could slow the decline. No way. It’s his usual pattern to just ignore, ignore, ignore and gaslight me or my brother whenever we raise concerns. He really, really loves Mum too. She’s his absolute world and he’s going to be totally lost without her. But he seems to think we’re criticising him, so he has to pretend it’s all fine - even at Mum’s expense. My brother and I have just accepted it now. But it’s painful.

One thing I have to say is that you must stop your mum from driving. It's could end up tragically and not just for her.

I looked after an elderly uncle who when I suggested moving downstairs so he would when the time came . He was 94 . Of course , crisis happens , he is too unwell to manage and he ended up on hospital long term until care home . He could have adapted things , had carers and spent his last days at home . Instead, miserable and unhappy .

Not quite the same but when my DM started having clear symptoms of early stage dementia my brother refused to accept it as a possibility. He had an explanation for every individual example and refused to consider the bigger picture. I found it helpful to talk to him about 'ruling out' possible cognitive problems, at the same time that she was having other annual blood checks etc. Mum also had disturbed sleep and what she and brother described as nightmares but I'm sure were actually delusions (she would sometimes call me in the night convinced horrible things were happening but the next day would claim she knew it was a nightmare). This was one of the things that triggered her to want to have some assessments to 'rule out' health problems and see if she could get some medication to help her sleep. In her case, she had done a memory assessment at the GP a few years previously and told she was fine. When she took the assessment again the GP initially didn't seem too concerned but agreed to refer her for further assessments given her age. Those assessments were nothing like the GP assessment and led to a very clear diagnosis. Assuming you are in the UK and using the NHS it can take a long time from referral to the first assessment appointment, just to warn you.

My mother went from driving to passing away from Lewy Body Dementia in 6 months. She was 79. The speed of decline was shocking.

I‘m an SLT working in community stroke and my mum died this year, in-laws last year, so this feels very familiar,

Of course it’s important to respect people’s autonomy but I think it’s also important to be blunt and open about your own views. Bossy daughter persona. Particularly when you do actually know what you’re talking about!

You know what you can do: you can contact their GP; you can report your mum to the DVLA if you’re concerned (tbh it does sound like you should be); you can encourage your mum to have an RDAC assessment; you can keep saying ‘you need a referral to the memory clinic Mum, I’m going to take you to the GP’ make the appointment, turn up to take them there and let them actually have to stop you.

There is a lot going on here and I see a lot of parallels with my own parents. Thre was clearly something very wrong with my dad but mum just adopted a head in the sand approach to it all. They were very much the sort where you don't go to the doctor unless your leg is hanging off - badge of honour about not having seen the doctor in X years. On the one hand I think mum was scared - she is not a stupid woman and recognised what was wrong with dad even though they didn't have a firm diagnosis and knew that there was no good outcome. And she also thought that having the name for his memory loss wouldn't make much practical difference.

All you can do is keep encouraging your dad to speak to the GP. Push for a formal diagnosis for your mum. Consider what additional medication she might need for agitation, sleep disturbance. My very real fear was about what would happen to my dad if my mum had had some sort of illness and accident as he would not have been safe on his own, and my sibling and I are a long way away. Social services provided some reassurance on that front. It often does take a crisis for things to start to click into place though, I've seen it so often with friends who are going through similar with their parents.

It feels wicked saying this but following a TAVI three years ago mother has suffered aura, hallucinatory dreams, loss of balance, brain fog and dizziness. Her memory is pretty good but frailty has been swift. She's 89, diagnosed with a meningioma, silent strokes and Parkinsons. She is low and miserable and had lost her confidence. She was a bridge playing party girl. Her present situation is entirely miserable for her and she is not coping with the loss of her old life or with suddenly becoming old and frail.

I pray every day this will not last long for her.

I'm really sorry. I'm glad she has you x

How much have you offered practical help? It sounds like all your observations point towards more support needed, but is it possible that the inertia on your parents part might come from a place of being overwhelmed or intimidated by the medical or social care system? We have a similar situation with my parents, and you can tell mum that something will make her life easier until you’re blue in the face, but unless you present her with options a b c and d, with clear links of how to action them, and a handhold doing so, nothing will get done. I may be projecting from my own experience, but perhaps the combination of your mums health plus the daunting system they’d have to engage with is part of the issue?

Thanks so much for everyone’s input here.

Ill Try and answer some points.

In terms of practical support and going with her to the GP - it wouldn’t be accepted.

I offered to go to the GP but mum wanted to go alone.

she doesn’t drive much now but I raised it with Dad last week and he thinks she’s OK. I couldn’t report her with any evidence right now.

he does most of the driving in his car and is excellent.

there is no way I could physically ‘do’ something at the moment without her/their consent.

again this might be totally outing but they go to parkrun weekly and have a holiday abroad booked in the summer.

I think Dad will be more inclined to do something after the holiday actually. I think that’s the point to not having a diagnosis yet - that holiday insurance might be affected.

Been there but without a dad around. In symptoms she sounds a lot like my mom did in the early days. My mom is also fit as a fiddle. It was hard to persuade her to see someone but I just kept bringing it up. She realised I wasn’t going to stop. The NHS is terrible for this. I paid for two private appointments (about £350 in total) and she was diagnosed and discharged back to the NHS. It’s tough but has to be done.

Your dad might find that your mother is significantly more confused and "odd" on holiday, when she is in unfamiliar surroundings. That was one of the earliest signs with my dad too, he really was very unsettled away from familiar surroundings and quite agitated which was very unlike him before he became unwell.

Yes! They went abroad a couple of years ago and she got in a pickle about a bus that was going to leave and he wasn’t on it. Some kind of miscommunication- still not entirely sure what happened but she obviously got very frightened.

Weirdly I think I could be more persuasive if Dad wasn’t around. But they’ve been married nearly 60 years and have been through thick and thin. He’s a really reliable decent husband. I couldn’t overrule him or start pulling rank.

What have you actually said to your dad about the driving??? You understand that she could kill someone. A child. Herself.
This is clearly extremely difficult and very sad and you sound like a lovely daughter and a sensible person. But..
She cannot drive anymore.

Similar situation with my in laws. They have both been getting gradually more frail but still generally OK.
Earlier this year they both contracted a winter vomiting bug and have gone into rapid decline.
MIL is confused much of the time, she will fall asleep mid meal, has had so many falls, can’t hold the kettle anymore etc.
FIL is starting to become incontinent and struggles to walk. He has had several falls but still insists he is fine to drive.
Both have various underlying health conditions.

They live in sheltered accommodation and have wearable alarms but refuse to wear them because??

My DH and his siblings are in denial and don’t want to try to step in. I have had a major falling out with one of his siblings because I said they needed some help and the sibling just insisted that because they weren’t asking they didn’t need anything.

I did report FIL to the DVLA anonymously because he is not safe to drive.

I don’t have any advice (sorry) but it is very difficult 😞

By the way, I stole my mom’s car keys as soon as I realised her mental capacity was a bit compromised. It’s impossible for her to get a new set too (for longwinded reasons).