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!

It used to be possible to use savings to buy an annuity that would pay care home costs. I don't know whether that's still the case but it might be worth exploring.

MereDintofPandiculation I’ve been looking into respite in a local care home he won’t spend the money. I’ve tried explaining that allowing mum to sit and sleep on/off all day with little stimulation will accelerate the dementia but he’s burying his head in the sand. I’m ringing SS today to try and get them to come over again, hopefully they may be able to talk to him and make hime see sense.

I am sorry your are experiencing similar issues Ellemeg82,isn’t it just beyond frustrating at times? I think I do need to take a back seat and let things ‘flow’ for a while and just hope they all pan out in the end.

TheYearOfSmallThings I will just have to take a step back for a while. Tbh, I was doing a lot more a few years ago and nearly had a breakdown over the stress of it all.

Immediate care needs annuity. Yes, you can - but at the point of them going into care, not beforehand.

Sitoff isn’t it just beyond frustrating?

Yep, that is the exact situation we are in StiffyByngsDogBartholomew, I feel for you.

Much love to you squirrelnutkin10 I can not begin to imagine what it must be like to have both parents suffering from this god awful disease. I do think the time has come for me to put my foot down and have a long hard conversation with my father, it’s getting ridiculous we are all pussyfooting around him, it’s having a knock on effect on my life which in turn is having a knock on effect with my teens and my relationship with my DH.

MontyDonsBlueScarf I’ll look into that, thanks.

We had this with late grandpa,still living at home at 94, lots of £, lived like a pauper. Died and hadn't gotten any joy from his hoarded money.
Be blunt with your dad, at 82 he might not have a lot of days left to enjoy and the savings are for a rainy day? well it's bloody pouring and he needs to support his wife and her health.
No pockets in a shroud!

@Picklemeyellow i think we are in very similar situations although my mum still has seems to have all her faculties just is paralysed and can't speak. I also have a 14yo and a full time job plus an hour round trip to DPS. And it's having a bad effect on my relationship with Dh as I'm always stressed, feel put upon by everyone's needs and angry/resentful at anyone trying to impose on my limited unaccounted for time. We are caring twins !

Another one here, Dm rapidly declining and won't spend anything on the care and help. She has plenty of money. Her loudmouthed twat of a "partner" / companion picks holes and makes her mistrustful of us, her own children, and every solution we provide, constantly moans about having no time to himself but is actively blocking care arrangements that would give him more time. It's infuriating and my sibling's and my own mental health and work is suffering but they can't see beyond their own selfishness and egos. I excuse DM because of her condition but I wish the partner would get lost.

Is he after the money @Rainypups76 ? I can understand why parents want to go without for the benefit of their children but that doesn't seem it would be the case for your DM

I feel for all of you in this situation. The person in the home 24/7 with someone suffering from dementia has an awful time and if he doesn't accept what help us available he could suffer a mental breakdown himself.
It shows he cares that he wants enough money available to give your mum a choice of good care homes later but obviously they both need more help now as well. When you talk to him I would try to show that you understand where he is coming from whilst emphasizing that he needs a balance with more care now.
If you could get him to go out for a break himself while your mother is at the club he might be able to see how another day could also benefit him as well
You mention AA. Does he know he could also get carers allowance. It isn't a lot but would pay for a second day at the club.
If he doesn't have a cleaner I would encourage this as well.
Has he lost touch with the outside world himself a bit with caring for your mum? I mean does he still have friends? Could he go out to lunch or cinema or something while your mother is out. Preferably with someone but even on his own is a break from the relentless sadness of it all.
I think you will need to have a think, maybe with your sister, about how much you can both do and make a decision not to go beyond that. Hard to do I know. My mother is 92 and still loves ves at home. She is active for her age and has all her mental facilities but is getting frailer these days. I have her over for Sunday lunch, do washing, shopping and go to all appointments. Not really onerous for this stage of her life. But she is a very social person and when she can't get out of has visitors I feel the pull to fill the gap and have had to make some decisions about how far I am prepared to give up my time. I have a grown up daughter whose teens are going through difficulties so I give a lot of emotional support there. DH and I are lucky enough to be in good health so I want to spend time enjoying holidays ext and seeing my own friends. In my head I know how far I'm prepared to go with mum's care but don't know how good I'll be at sticking to the plan I have when things inevitably got up. Good luck Op. Think about carers allowance if he doesn't get that. It is paid to the carer but you could stress that using it for mum's club would be of huge benefit to him as well. 💐

I don't think carers allowance is available to people over state pension age.

No, they can't get it. The person cared for maybe entitled to attendance allowance

StiffyByngsDogBartholomew I really feel for you, all these plates spinning in the air is draining, isn’t it?

That sounds like a truly frustrating situation Rainypups76

shiningstar2 dad doesn’t qualify for CA because he has too much money and claims a state pension. My dsis has her own cleaning business so cleans for them once or twice a week, she’s happy to do this so I leave her to it tbh.
Dad won’t do anything, one of the main reasons I keep encouraging him to agree to another afternoon at the day centre is for him, so he can do something he likes. The only thing he really wants to do though is to go back to playing golf. He used to go 3 days a week however it’s an all day thing as the old club he used to go to is over an hours drive away. He won’t even compromise on a more local club, that’s how awkward he is. Nothing I suggest agrees with him, he wants it all his way or nothing. He really is cutting is nose off to spite his face.

It is a shame he can't get CA. and a pity he won't try a local golf club as the exercise, company and enjoyment even once a week would be so good for him. It doesn't seem likely that he would be prepared to pay for someone to come in and sit with your mum on the morning she's at the club so he could get the time needed. You must be at your wits end. You do need to look after yourself as well. Remember the airline advice. Put your own mask on before helping others. Take care .

My DF will disregard my suggestions but will do exactly what my DB thinks is best, without a murmur.

It sounds like you're doing so much to help already. The reality is with dementia is that you can keep pouring, but it still feels like it isn't making a difference. Stay strong and keep doing what you can, and pushing your Dad towards more active solutions. It does help and it does matter. And I'm sure that your Mum knows and understands what you're doing for her though, even if she might not be able to say this.

We had a (free) carer from the Carers Trust once a week for a few hours. It was always the same lady, which really helped my Mum (and also meant my Dad became confident enough to leave them together and take some time for himself). Maybe there is one in your area who might be able to support?

such a crappy situation all round

what we did, and it sometimes worked and sometimes didn’t, was suggest a trial period with the option to stop any time. It did sometimes mean screaming phone calls demanding it be stopped immediately, usually when a bill arrived but it did mean things like carers coming in, meal deliveries and various aids could be tried and sometimes the benefits were obvious.

maybe some activity out the house for your dad too, so that your mum has to be looked after somewhere. There’s “men in shed’ activities near me that just seem designed to let older men socialise under the guise of pottering about on projects.

theres not an easy solution however.

I know exactly where you’re coming from. We had this with FIL when MIL had dementia. In hindsight I think it was denial about her progression, even now years after her death he refers to her dementia as her ‘memory issues’ like she’d lost her keys or something.

At the time it seemed to me he didn’t want to ‘waste’ the money on her because none of it was happening. It was ridiculous he couldn’t care for her, but he wouldn’t spend the money on getting a carer in to wash her and do her hair, he also wouldn’t allow us to pay for one either. After she died we discovered he had hundreds of thousands set aside for their ‘care’ when they needed it. I was absolutely incandescent with rage, we’d been figuring out what to cut in order for her to have proper care and he’d been sitting on a fortune, unwilling to spend it.

The only thing I can think might work is talk to the GP and get them to tell your father she needs a second afternoon, almost like a ‘prescription’. Men that age tend to take what a Dr says and follow orders. It will give him a break and hopefully will give your Mum some much needed interaction with other people.

Sending you a massive hug.

It is available if you’re over state pension age, but you cannot receive both state pension and carers allowance. State pension is a higher rate, so sensible to go for that. But if for any reason you are nit entitled to a full state pension, it might be worth taking advice to see whether you’d be better off with carer’s allowance. I don’t know how pension credit works and whether it’s merely theoretical that there might be a situation where CA is better.

I also don’t know whether you could defer your state pension to be able to get carer’s allowance (and then get an enhanced state pension when you finally took it). You’d need to get advice before trying that route.

Carers allowance and State pension

”You cannot get the full amount of both Carer’s Allowance and your State Pension at the same time.
If your pension is £76.75 a week or more, you will not get a Carer’s Allowance payment.
If your pension is less than £76.75 a week, you’ll get a Carer’s Allowance payment to make up the difference.”

he refers to her dementia as her ‘memory issues’ like she’d lost her keys or something. Memory issues are more socially acceptable than dementia.

I agree with seeing if you can get a male in authority to talk to your dad about this, a GP if possible, and be stern with him. In my experience my mum would take no notice of us, but if a GP told her to do something, she would do it. She had a really good one who did home visits to talk to her. Even if your dad doesn't take any notice at least you've tried. Good luck.

It can also be sticking fingers in ears and going "la la la, it's not dementia, just forgetful". Which is understandable when you think about the prospects.

@countrygirl99 It can, though the person in question has now passed away. It can be helpful when persuading someone to get help . "Getting your memory checked" is marginally more palatable than "get you checked for dementia".

I think people in general are nicer to people who are "a bit forgetful" than to people who are in the early stages of dementia. That will change as it gets more common but we're a long way from that yet. Or maybe I'm just revealing my own prejudices and fears for my own future.

Could work. Can't hurt to try. Maybe the GP?

@Picklemeyellow you and your dsis have POA’s for health and welfare and financial for your Mum so (assuming that she has lost capacity to make these decisions for herself) you have legally signed up to act in her best interests, not in your own or anyone else's. This was your Mum’s wish when she was able to make that decision.

I think you need to have a very difficult and direct conversation with your Dad to make this clear and start using the legal powers that you have to provide your Mum with the stimulation that she needs. That could be more carers at home, you could look at getting direct payments to employ personal assistants to provide more consistency and tailor made input, it could be more attendance at Day centres, dementia cafe’s etc. but currently nobody is acting in your Mum’s best interest.