Mum’s dementia and dad’s reluctance with so much.

[Picklemeyellow]

I am so frustrated and feel as though I am going round in circles these days.

My mum (80) has Alzheimer’s and lives with my dad (82). I go round to theirs at least 4-5 days a week.

I 100% appreciate what my dad has to go through as he is living with this 24/7 but he is becoming so cantankerous, digs his heels in with any suggests we make on how to help and simply resents spending any money to help my mum (even though they have lots of savings).

Mum gets AA and this covers her carer who comes in for an hour each morning to wash and dress mum (took a year to persuade dad to allow us to get a carer in) and the rest goes towards her weekly day centre trip. Anything else will require funding from her pension and savings.

It took several years to convince him to allow mum to go to a day centre, it’s £60 for 3 hours on a Wednesday afternoon with a hot cooked, two course lunch included. And although mum always moans when it’s time to go there (as she believes every week is the first time), when she gets there she loves it. I usually collect her and she is laughing and smiling when I go in and get her, all the staff are so kind and friendly, the other dementia suffers all have smiles on their faces too. There is always music playing and it has a really joyful atmosphere. Most people go there several times a week.

I would love for mum to go another afternoon, not only for her benefit but for dad’s too as he moans constantly that he has no time to himself but he just will not allow it. He doesn’t feel the place benefits her (I really really does benefit her) but the real truth is that he believes these places should be free as they are old age pensions (forgetting of course they have ££££££’s in the bank 🙄).

When at home, mum just sits on the sofa with a big box of chocolate biscuits and snoozes on/off all day. She ends up depressed and disoriented. She can not occupy herself these day and it’s easier for dad to let her sleep then he can get on with bits in the garden and shed. I just can not get through to him that this is so detrimental to her health (physically, emotionally and mentally).

I feel like banging my head against the wall. This is driving me insane and the most frustrating thing about it all is the fact that most of ’their’ invested money is actually my mum’s inheritance from her parents.

I truly hate to see my mum suffering with this god awful disease but it’s even worse seeing her wasting away on the sofa when there are places she can go which actively help her. I am seriously thinking of getting SS or an Admiral nurse in to try and educate him on the importance of mental stimulation for dementia suffers.

How do you get through to such a pig headed old man? And my dsis is no help, she has just warned me to no push dad as he’ll ‘get the jump’ ffs!

I recognise so much of what you are talking about. My Mum had dementia and my Dad found it difficult to accept outside help because he was both worried about the ongoing cost (but like your Dad didn’t really need to) and he was really resistant to having strangers in his house.

It was exacerbated by him being so tired he couldn’t imagine any small changes having any kind of positive impact. When he did agree to them, he obviously realised they did, but it was slow going.

It’s such a hard place to be in for the whole family. All you can do is continue to advocate for her and support your Dad. My Dad was managing the best he could in very difficult circumstances and now time has passed I can see that much more clearly.

I recognise so much of what has been said here. Dad and I are constantly at loggerheads as he is so negative and drained by it all yet won’t accept any help. Mum spends her whole life on the sofa and it is not doing her any good. Yet he moans she is deteriorating. It’s so so hard. Especially with a busy job and parenting teeens and living an hour away. I’m doing what I can but goodness it is such hard work.

I really hate to suggest this - but would it help to get A Man to tell him? Preferably one with an air of authority.

Get a social services assessment - you are entitled to one even if they are self funding. That helped point to stuff we wouldn't have found by ourselves ( also an hour away). E.g. Mum goes to a church run lunch club for the elderly the social worker told us about. She's picked up and dropped off, it's about 3 hours with an activity after the lunch and it's only £4. If there is something like that your dad might be more keen and he could go along as well if he wanted.

It’s financial abuse. Report it to social services - sensitively as you don’t want to upset your dad.

my dad had dementia
my mums life was completely miserable
it’s basically it till one of them dies and your mum will only get worse
there money is the only bit of security they have they have absolutely no way of replacing any money and genuinely fear ending up penny less

yes it could be better but she has carers coming in goes to a day centre once a week

Why don’t have her at yours at weekend

FIL has stage 4 cancer. MiL very bad osteoporosis. They sit on hundreds of thousands of pounds yet won't pay for a carer to help them bath once a week or with anything else. Full non means tested AA too!
MIL would love it. FIL says they don't need help. So resigned at the end of their lives to struggling with a daily strip wash and sat looking at each other all day.
I will never understand.

Could you not tell your Dad she received a funded place and you pay £60 for an extra day? You are likely to inherit the money back as from what you have posted they will be leaving you an inheritance.

Could you offer to pay for another session and see if your DF may then see it will help him. I’ve a friend whose DF goes to a centre 3 days a week, as she cannot cope with him at home everyday, it takes all their spare money as she can only work part time. Maybe a visit from Age UK would help to persuade him. I also have a family member who looks after his wife with dementia, he’s basically very stubborn and thinks he can do it all, she’s now in hospital and he now realises he can’t do it all, she has carers come in weekday mornings, which cost £500 per month, but his family have told him clearly they won’t help anymore unless he gets more help. He basically just puts his head in the sand and feels the same that care shouldn’t have to be paid for.

It is just such a difficult times, I totally agree.
I am really struggling to know how to help. Between my sister and I my parents we go round and help every day.
Dad must be so tired physically and mentally. It’s hard enough for me dealing with this at 50, it must be a million times worse for a 82 year old.
I hate this disease so much, it is affecting every member of our family in one way or other.

When you've spent your whole life putting something aside for the future/a rainy day, it's really hard to change overnight and start spending. Particularly when it means facing up to the possibility that the rainy day has come.

Two things that helped me:

Someone gently asked me when I thought it was going to rain harder than it is now

I mentally reallocated money for holidays and outings that I was used to spending but wasn't spending now.

I still have to have a word with myself from time to time to remind myself that saving obsessively was a good strategy once but it's not the best choice for my life now.

Thethingswedoforlove I am so sorry you are affected by this awful disease too, it’s just beyond draining isn’t it?

2024GarlicCloves I don’t think it would help tbh, he’s quite stubborn with everyone.

countrygirl99 we did have a SS assessment about a year ago and they weren’t overly helpful once they had established that mum and dad have quite a lot of savings but we do have a local lunch club in our village. I have tried to persuade mum and dad to go along and dad wouldn’t hear of it but maybe the career could take mum along and I could pick her up afterwards, thanks that may work.

Missingmyusername my dsis won’t have this as she says we can’t ‘make’ dad spend his money but I keep saying to her that it feels like financial control especially as much of their savings was mums inheritance.

rwalker For various reasons, having mum at mine at the weekends wouldn’t work.

tokesqueen I truly do not understand either.

RachelSTG I don’t have the money to pay right now. There are no guarantees I will inherit any money. If my mum goes into care at anytime and lives for years there will be nothing left, I’ve seen this happen quite a lot recently. I never and will never expect any inheritance.

Mindymomo I don’t have the money to pay.

MontyDonsBlueScarf I totally understand the fear my dad has about the money.
One of his main anxieties over it all is when mum needs to go into care, he worries there won’t be enough money left and they won’t have a choice of care homes and mum will be places anywhere (I and the lady at SS have explained to him this won’t happen but he won’t believe anyone).

And whilst I can understand where his fears lie, I feel that it can not be at the detriment of my mums welfare and wellbeing in the here and now. I can not stand the thought of her sitting on the sofa, slowly ebbing away with little metal stimulation when there are places she can go which help her. I would understand if they had little money but fact they have enough in their finances (and then some) to cover this is irritating.

You say you usually collect her from the day centre. Does your dad ever do it, so he can see the difference in her there?

Same as mine. In relation to help he's quite happy to run me ragged but perish the thought he put anyone else out

Have you tried the local branch of the AD society? They often have free groups like singing for your brain although they usually do require a carer to go too rather than drop and leave. They also have dementia advisers who can support patients and carers

Another suggestion is that the GPs often have 'social prescribers' these days whose role is to look into opportunities for people to be socially included many for free or cheap

I guess no-one has LPA? If you had financial LPA for mum you could activate it and pay for the stuff yourself. Even if it's 'jointly and severally with dad you can act on your own. He wouldn't like it but you legally could. Or you could apply to the court of protection to be appointed her nominated deputy if no LPA and she lacks capacity to make one as it sounds
Like she does. Takes ages and there is a cost but this would give you control of her money and is a good idea in case anything happened to dad and he passed first.

I don't think, on what you say, that this will meet a threshold of abuse as he does allow the daily carer and once a week visit so I don't think social care will formally act to tell him to do any differently

NoBinturongsHereMate he does sometimes collect mum but he doesn’t like seeing the other people who go there, some are more advanced in their dementia journey and it scares him because it’s give him a possible insight into their future, I understand that but it clouds his vision and he can’t/won’t see the good this place actually does for its participants.

StiffyByngsDogBartholomew same here, my dad is fully aware of the stress this disease (and his stubbornness) is causing my sister and I. We both have chronic health issues and are not feeling great atm (both awaiting procedures and operations) but he’ll bury his head in the sand.
I was made redundant last June and he was joyful over this, he actually told me that I could now care for mum. I felt absolutely dreadful telling him that I wanted to find my own job, I still carry that guilt now but also anger that my dad would happily hand over the bulk care of his wife to his daughter whilst he has £400k sitting in the bank! He is old school and believes because he has daughters they should step up and look after them, not sure he’d have the same attitude if he had had sons. He never cared for his parents.

At the beginning of mum’s diagnosis I contacted as many organisations as I could. The Alzheimer’s Society were really helpful and we started going to many things offered by them but as soon as Covid hit it all stopped and very little has started up again in our area.

I have been in contact with our local social prescriber and she kindly sent me details of dementia cafes and singing for the brain groups etc, sadly most are on the days I work and dad won’t take her to any of them. I’m trying to see if dad will agree to more hours for the carer, she is lovely and has offered to take mum to any of these places but again, dad won’t spend out the extra money even though he says she has been his saviour in the mornings. He truly believes the government should pay for everything because he’s worked all his life and is elderly, he just will not accept that’s not how life works.

Dsis and I have fully POA’s, both medically and financially (again this was a huge battle to get). I know legally I can override dad because of where we stand legally but dad is a very difficult man at times and if I went over his head it would cause all kinds of issues. My sister always takes his side so it would be them against me. I text her last night to say how frustrated I am that he won’t agree to another afternoon at the day centre and she replied not to interfere as it’s dads money and he can do with it what he likes 🤷‍♀️ I am banging my head against the wall every day.

he worries there won’t be enough money left and they won’t have a choice of care homes and mum will be places anywhere Explain to him that the more she declines now, the more expensive a care home will be? Or get her into a care home sooner - it sounds as if she’d have more activity in a home?

It's so difficult OP. My parents are so similar. Very set in their ways. So stubbon. So reluctant to face up to things and bury their heads in the sand.
Whilst I don't have much practical advice, I just wanted to say you're not alone and I feel your pain and frustration.

Sometimes I think you have to just keep on at them and keep on pointing out the benefits. If your mum is getting benefits from the day centre (which it sounds like she is) then keep reminding your dad of that. If they're not doing much at home and they have savings then £60 a week extra is nothing.
But I know it's hard as my parents are the same with money. They've got savings but are so reluctant to use them. Even though it would benefit them.

I don't think you can tell your father how to manage his money, or how much care or how many day centre visits to pay for. He may genuinely feel that the distress your mother experiences when she is picked up outweighs the benefits of going. Also, while it is upsetting to you to think of your mother just sitting on the sofa doing nothing all day, and you would feel better (as would I) if she were out being managed into an appearance of more normality, one extra afternoon a week is unlikely to make a huge difference to her quality of life.

But what you can do is limit your availability and make absolutely clear to your father that he can afford appropriate support (assuming you are correct about this), and if he agrees you will help him find it, vet the provider and put it in place. If he chooses not to do so, you will not make up the shortfall. Your sister is correct in my view - don't bang your head against a brick wall here.

Mine is very authoritative (policeman) but dad won't listen to him either.

I hear you.
Won't countenance any outside help except offspring. Cost is used as a barrier, as is not wanting people in the house or anything else that avoids engaging with the issue.
Caught between a rock and a hard place - you want to help (whether through love or duty) but he insists it has to be on his terms.
Totally get why you feel his suggestion of you doing it all is not acceptable to you. Add you DSis in the mix and no one is happy!

I suspect that the OP, like me, gets very pissed off with listening to her DF complaining he never has any time to himself when he refuses to take steps to make his own situation better or when he has the opportunity to take time refuses to do so.
my dad has plenty of time available to him. He won't relinquish control of mum, he can't barely stop fussing over her for 2 minutes. It gets exceedingly annoying, especially as the person sacrificing your own time, to listen to them moaning about nobody helping them.

I feel for you op as l have both parents with Dementia mum much more advanced than dad...
I tip toed around my lovely but stubborn dad for a couple of years, but things were deteriorating, l could barely cope, and the crunch came when my DD was diagnosed with a chronic illness ...it was a lightbulb moment...l had spent much of my time and mental space worrying about two almost 90 year olds and not enough looking after my DD..I was BLUNT.

I sat my dad down and told him half of their savings were mums and she needed them NOW, l was not willing to twice weekly listen to a long long debate with him about how to manage...yet nothing changing, as l had his GD to worry about who desperately needed my time and attention, (alongside her brother and work)
I already did all admin, food shopping, organising of every aspect of their lives and had done for a decade.
He became much more accepting of the facts, and over the last two years my DM has had a full time carer, yes they have blown all their savings, but he has been free between 9-5, 5 days a week and my mum kept busy, stimulated and out of a care home, (they live in an annex of my house)
My advice be blunt, tell your father this is not acceptable and you mum is entitled to half this money and needs it now, and you will exercise the POA if need be.
Your mum needs to go to the Centre 5 days a week to slow further decline, even if by taxi.
good luck