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.

Yeah. I think you have to keep working on him. Make it sound like a little check up that might come to nothing. If it becomes clear you won’t stop bringing it up he might relent. Of course, he might not.

Oh OP I’m so sorry. This must be extremely hard to deal with. My DF got Alzheimer’s and Mum spent ages dragging him reluctantly to and from loads of medical appointments. This probably isn’t what you’re after but for my situation, I really wish she hadn’t bothered.

It was pretty clear what was going on in our situation, and going to various medical professionals really just stressed Dad out and achieved nothing/very little. It’s not like they could give medication that would help much etc.

I think in your position I’d worry less about the diagnosis, and more about practicalities, POA, driving safety etc. I’m so sorry OP.

No, not planned as such, but after many years and many crisis’ it might have been what mum needed to hear. Someone close acknowledging what she perhaps knows but doesn’t yet feel able to express. I’ll persevere for that reason alone. Please keep us updated - we all rely on this kind of support on these threads 🙂

I totally get how you feel @spinachsalad. Your DF is obviously in complete denial and like others have said, the holiday may or may not be the point at which he decides that there may be an issue. If his head is so firmly stuck in the sand though, that very well may not happen.

Do you know if they have got a credit card in case they want to fly home? When my DPs were in their late seventies/early eighties and started to travel abroad I persuaded my DF to get one just to cover emergencies.

The driving would really worry me too and I understand that you say there isn’t enough evidence yet to inform the DVLA. Could you do something though so she’s not a danger to herself and others? If she has her own car, could you ask to borrow it? Taking the keys is another option as a PP suggested. As you know, she simply won’t be aware that she’s a danger and has a real possibility of killing someone.

Is there a local reliable taxi company that you could give them the number for?

What help are they having now? Do they have the usual cleaner and gardener? The more people checking in on them the better usually. I arranged for my DA to have her food delivered whilst the cleaner was there to put it all away and throw anything out of date from the fridge.

And it’s great that they have a new GP who sounds a bit more switched on.

Once you’ve got them to agree to POAs for both health and finance, I would email the GP with your concerns. I’ve done this a few times with different relatives and they’ve always called them in under some pretence like medication review or Well Woman Clinic and have started a conversation with them about memory whilst they’re there.

I’d also have a read of Twilight Shepherds by John Oakstone. You probably know a lot of the things he says working in that area but it’s a very clear guide, written with compassion and from experience and I found it helpful

Thank you. I’ll try and be honest with my answers. I saw them on Saturday (unannounced) and it was alright. Kept the chat light.

Im not concerned that there will be any incident on holiday that Dad can’t deal with. They have their financial affairs (including LPAs for health & finance) in the best possible shape. Dad has very detailed spreadsheets about accounts etc.

they have no external help whatsoever. They really don’t need it. They have a big garden with veg they grow and a wild flower meadow 🙂

Im going to try and explain about Mum driving. It is not something I can have a say on. It just isn’t. I can’t take her keys or suggest taxis. Dad has an EV and is an excellent driver. They take long weekends with planned stops for charging etc. Mum pops to the local shops for bits and bobs and goes to a local Pilates class.

There is no chance of me somehow taking keys or persuading her to give up driving. Dad is in denial but he lives with her. I can’t overrule them both (including siblings). I understand that people reading this might be recoiling in horror about the potential risks of her being in an accident but nothing has happened to date. She hasn’t started having little near misses or knocks and scrapes. She no longer drives at night either.

I think we’re just at an impasse until after the holiday.

I think I also appreciate the POV that sclepping around to medical appointments is distressing and may ultimately be pointless. This is my Dad’s view and although I don’t agree I do really respect that this is coming from a place of love for Mum. It’s also really going to be him doing all the heavy lifting with whatever unfolds. I can’t blame him for kicking the can down the road.

B12 deficiency can cause some cognitive issues....could you get her to a GP to have that checked and maybe email them before with your concerns?

You have my full sympathies. My parents are the same. Mother declining, father in denial. Mother has been offered support but won’t take it. They weren't good parents to me. After my father was very unpleasant to me when I raised the subject of mother’s decline and about wills, powers of attorney etc, I’ve just left them to it. They have every right to make their own decisions, but these come with consequences. Sometimes there’s nothing you can do.

Apparently this has been checked 🤷🏻‍♀️ we’ve also gone through stuff like dehydration, infections etc

Thankyou. My parents have been great. I’ve got nothing to complain about wrt my childhood. I’ve had quite a charmed life tbh.

Another reason I’m reluctant to start WW3

I would definitely feel the same in your position.

I posted higher up, but you can report her anonymously to the DVLA if you really think she shouldn’t be driving. They send a form, there is no indication of why it has been sent.

If they don’t return the form then licence is revoked.

If they fill it in honestly then DVLA act on what is said if appropriate.

There is no tie to you unless you say something and any decision is not on you either.

I have done it when DH & his siblings were all sticking their head in the sand about FIL. It only happened recently so don’t know outcome yet but there is no come back to me so I am happy.

Would a diagnosis actually help your DM? Do you think meds do help?

Why can’t you report to DVLA?

I have no evidence that there is a problem with her driving. I won’t be reporting. I would if I had evidence but I don’t. Her licence wouldn’t be revoked. We have no reason to assume there is a problem.

I do appreciate people commenting but I’d appreciate if this didn’t deteriorate into an argument about her driving.

I appreciate the viewpoints but hopefully I’ve answered the questions about her driving. Things might change but please remembers I don’t live with my parents and I have no reason to assume she’s at any increased risk now than anyone else. She has her eyes and hearing checked. Her car is in good working order. She hasn’t had an accident so there’s nothing for me to report.

hopefully this can be left here and the thread can move on.

i think a diagnosis may be helpful for meds but maybe not. Maybe it’s just more trouble than it’s worth (that’s my dad’s reasoning)

It took about three or so years to get my mum to have her assessment, by then it was obvious to everyone what was going on. She was prescribed meds but they made no difference, she has vascular dementia.

My DB and I did sell my DM’s car within the first year of her starting to get lost and forgetting things. I was worrying too much she may go round a roundabout the wrong way or not stop on a Zebra crossing.

My mum had Lewy Body dementia - it presents very differently from Alzheimer's and it sounds like your mum's symptoms are very similar to mine mum's. I don't know, just reading your post reminded me of the early stages with my mum. I'm not sure how to suggest you stop your parents denial, but if you can there are drugs which really helped in the early stages.

It's one of the horrible ironies of dementia that, as I understand it, the earlier you get on medication the better BUT even then there’s a limit to what it can do - I was told it won't do anything for vascular dementia, for example - and, as @Unpaidworkmakestheeconomytick said so accurately, they keep denying the reality of it for so long that the window for usefully getting medication narrows or disappears.

I think the best thing you can probably do for now is keep reminding them you're always there and to ask if they need any help. A diagnosis is useful for securing care if that's needed, but it's not that likely to result in treatment that will affect the progress of the condition, in my experience.

Thankyou

My DM has vascular dementia and her earlish symptoms sound identical to the OP’s DM.

My dad was actually quite far along in his dementia journey when the GP suggested he should stop driving. The issue was forgetting where he was going or why he was there rather than the physical process of driving. He was a very good driver, had been driving over 50 years before he died, never had an accident. The muscle memory of driving and being careful on the road was all still there, at least initially. He never went far, only drove to the GP, Tesco, Aldi, golf club and always with my mum as passenger. No bumps or scrapes and he was the best parker I've ever known.

So it's not as simple as cognitive impairment = immediate loss of licence.

My DFIL was very much in denial regarding my DMIL, even after diagnosis. In denial yet embarrassed still.

He too wanted to maintain the status quo and it was impossible to get through to him that having outside help would ease the pressure and help keep DMIL in her home, where he wanted her to be, for longer.

I would have a bit of a chat with them again, maybe suggest a cleaner to start off with.

Just wanted to offer some support and solidarity.

Similar situation here but much further down the road and it so very difficult.

I have been given all the practical advice and I work in care so am an ‘expert’ and it’s impossible when your parents are in complete denial and flatly refuse to address the issues.

I had to sit back and wait for the inevitable crisis and field the well meaning advice and concerned phone calls from family and friends asking why I was not doing anything.

Its tough and a long road unfortunately but this place is great for support.

@ExplodingSmittenssuggestion of encouraging them to get in a cleaner is a good one. Maybe they don’t particularly need one, but it’s good to have them used to other people in the house as that’s the likely scenario as your DM declines and when help is needed it’s so much better to get it in when it’s actually needed rather than them denying, suffering on ( with you in tow) and getting it in when it’s really too late to be useful.

Sorry that sounded very gloomy, but getting them used to a bit of help on a small scale is a tremendous first step.

Yeah I hear all these comments but they just don’t need it anything practical. They shop weekly (Waitrose) and clean/cook perfectly well. There are no issues at all with functional activities of daily living.

this kind of future proofing would be impossible.

I started the thread thinking about the medical interventions that might be possible with a diagnosis but as the week has gone on and I’m defending Dad and their choices I can see why they/he don’t want this kind of input.

A diagnosis is useful for possible medical interventions . It’s not my area of expertise but I believe there are some medications that can delay symptoms if taken early.

in my experience it’s impossible to get a diagnosis if you hit a crisis and that was problematic for us. My mum was denied the ‘dementia protocols’ due to no diagnosis and she would not stay still for a brain scan so could not obtain one. It was very frustrating.

So to avoid such a situation if a crisis occurs a diagnosis is useful.

Most of the medical options available are a bit hit & miss so there is no guarantee it will help and given that they appear to be in otherwise good health & do things like parkrun most of the lifestyle options are already in place.

Maybe there is nothing you can do except keep an eye on her & document the things that are causing you concern and be prepared to keep revisiting the conversation with them.