Memory decline but refusing to visit GP

[sandyrose]

My DM’s memory has been slowly declining over the last few years and fell off a cliff when DF died 7 months ago. She can manage her hygiene, cooks and cleans but each time I visit I end up turning away almost all of the contents of her fridge, there is so much rotten food. I live abroad and visit as often as I can.

She doesn’t seem to get lost at all but can’t remember what was said to her only minutes ago. She’s very stressed about finances so she is constantly and obsessively ‘going through her paperwork’ but can’t understand what any of it means - bills, bank statements etc. Before DF died she had a psychotic episode and was prescribed antipsychotics. She’s better now but very paranoid, keeps accusing me of stealing from her and believes the most absurd things are happening around her. I’ve dragged her off to the GP once, ago agreed that clearly she had memory probes but since she is refusing investigations there is nothing they can do.

She lives alone without any real family/friend support and refuses all suggestions of home help.

I feel that this situation is so unsustainable but my hands are tied. If you were in this situation with your elderly relative, did they eventually ‘wake up’ to realise they needed medical investigations and support? Or was their hand forced by a fall or something along those lines? I just have no idea what to do, I have rang every department and organisation imaginable and they all just say that nothing can be done until sh me asks for help herself.

I do have POA and online access to her main bank accounts, so at least that is something I can keep an eye on.

She is no longer prescribed the meds for the psychosis (Risperidone) and the hallucinations have gone (although she is still paranoid). She has another medication which is for anxiety. She doesn’t take this, as she believes she was prescribed this due to stress and anxiety when my DF has ‘his affair’ and since he has now passed away, there is no longer a need for it. When I remind her that she still seems incredibly stressed and anxious, she just ignores me.

All of the tips and advice given, and experiences of others, are actually super helpful for me to read.

This is true to some extent but the stress from losing him definitely triggered a significant worsening of her symptoms. She’s improved a little since then but I can tell that her short-term memory is much, much worse than it was prior to him passing away. But yes of course he just took over everything she couldn’t manage so it wasn’t anywhere near as noticeable when he was around.

That’s really interesting what you say re FTD. I have been reading up on this in my search for answers and she definitely seems to fit this picture, especially with the hallucinations and a change of personality. All that came way before any obvious memory issues and she still doesn’t get lost, she knows exactly where she is, where she’s going and how to get there (I’ve tested this by deliberately taking a wrong turn to see how she would react).

I have contacted them, and they can’t enter her home unless she agrees.

Sorry, I read it as 'I have access to her accounts'. As you were..

It's so hard. I think the 'passing' makes it a lot worse. If you talk to my dad you could easily thing he is fine. Give it 45 mins and you'd realise he isn't. Lots of his friends think my mum is over exaggerating it. She's not.

its quite shocking how little support there is out there for exactly this scenario. It's so widespread. I can't understand why older people aren't encouraged to have memory tests to check their capacity. They will have tests willingly on almost all other body parts. It should be routine. We should be preparing our ageing population for ageing! There should be a framework or guidance on things you should test or do. Think of all the advice we give expectant mothers.... but this major life stage has none of that. Why aren't older people encouraged to downsize , to put poa in place and do all the sensible things you can to make it easier for you and your family?

No wants to talk about dementia. Too much fear. Health care professionals are terrified of taking away people's rights and being sued, the government doesn't want to loose votes, and care homes don't want to loose income.

my dad is essentially a toddler in an old man's body. Yet to get poa we need to prove he hasn't got capacity as he won't sign it. He clearly doesn't. We at least have a diagnosis though. There must be so many others like your mum out there driving, living dangerously, vulnerable that have nothing. It's time it changed . Not right for anyone.

@TaraRhu I agree and especially re the driving, it has made me quite worried when driving out and about because there must be so many out there on the roads! My DM said she didn’t want to keep the car when my dad died as she had lost her confidence when she rammed into another car in the car park. I helped her sell it before she had a chance to change her mind. Now she tells me regularly that her neighbour with Alzheimer’s helps drive her to do her food shop! His reaction times are slower than a tortoise.

I kind of hope the mandatory eye tests will help weed out some of the dementia patients from driving.

I'm sure they've chosen eyetests as a starting point as most older people already have opticians that they visit. And it avoids putting more pressure on GPs

You make a good point about the mandatory eye tests.

This is why they call "memory clinics" that, I guess, not "dementia clinics". Much easier to get people to attend.

@sandyrose - I have had to read your posts several times as so much struck a chord with me iro my late mother.

Here are the difficult lessons I learnt and going slightly against the grain of this thread:

1. You will need to acknowledge that you can’t ‘force’ your mother into accepting help or trick her into medical treatment or assessment. This is the hardest lesson to learn.

2. The help will come when it’s forced on her by circumstances - eg falls. Or she has a jolt of self awareness. However, declining memory, being paranoid, a single episode of psychosis won’t trigger that help. She doesn’t lack capacity as that’s an extremely high bar. Further, having / eating mouldy food won’t constitute her being a danger to herself as in sectionable compulsory treatment!

As an aside, when a sibling did the throwing away of out of date foods, my mother was furious, upset and it damaged the relationship. And achieved nothing as she got them out of the bin and reinstated them.

3. Practical help was always appreciated - whether ordering online prescriptions, banking stuff etc.

4. My mother too declined to let anyone into the house to help (her cleaner apart), despite hospitals etc offering it. And she would fib her way to get discharged from hospital. (And absent her lacking capacity, the hospital had to take her statements on trust).

5. However, the barrier against letting a helper in was shattered when after a nasty infection and prolonged hospital stay, the hospital point blank refused to discharge her unless she agreed to a six week care package. Which she did, though without much engagement.

This upset me - but the splendid co-ordinator who got to know my mother well - commented that actually, counter intuitively, it was a positive. She was a stubborn old bird, defiantly clinging to her independence. And that was what was keeping her going!

6. After a particularly bad fall, she stayed with me for a bit. When she saw how upset I was, she agreed to have a daily carer. Not because she needed one, you see, but for me! Seeing me devastated at her state and so upset was what triggered her accepting tbe care in the home. I’m sure she knew she needed tbe care but my deep upset was the trigger. (With the door having first literally been opened by tbe compulsory hospital discharge care package).

7. Doing what we think is best for our declining parents - and what may objectively be the best - isn’t necessarily the best. Does that make sense, maybe not? Our declining parents still have agency and ultimately will be free to make their own mistakes. Like our emerging adult fledgling children. And this perhaps is the hardest lesson to learn.

Please don’t lay in to me. This is a deeply personal post that has brought back many mixed memories x

Yes.
TBH I'd been thinking for ages that Eye Tests would also show up memory issues when people forget the letter names and other general confusion.
Its surprised me how long its taken the DVLA / Government to instate it.

Oh gosh, I’m sorry to hear you’ve been through this as well. Thank you for this advice. I am already coming to the realisation that I have to let her make her own mistakes, and perhaps that’s a faster way to help in some way. A bit like letting an alcoholic reach the bottom rather than ‘fixing’ things in their life which only allows them to carry on.

I have pleaded with mum to get help for my sake - not hers. I am so far away and it would make me feel better now that dad is gone to know someone’s popping in. Sadly she has never been empathic, and that side of her seems magnified now. For example, she said she’s not upset that my darling dad is gone and was surprised when I said that I am!

I do feel I have to detach a bit, for my own sanity.

@MyrtlethePurpleTurtleThank-you for sharing. My parents are still alive but so much of what you have written really resonates.

I agree 100% that actually there is very little that it is reasonable for you to do, and that it is you who is carrying the worry. I do think elderly people should have as much autonomy as possible, including living in ‘unsafe’ ways. We all take risks. Many people would rather have a shorter life living the way they want, than a long, restricted or uncongenial life.

But I have to say from what you are saying, I certainly think she has already lost mental capacity for some questions - I think it’s being badly assessed. The medication being an obvious example. What I would also say is that just because someone loses capacity for an issue, don’t be too quick to rush in and change things - you make decisions in her best interests and that’s not always to counteract her previous wishes. Different if she is frightened, in pain or disrupting others of course.