I think it's time mum went into care before this evil disease rips my family apart. How do you cope with the guilt?

[MellowAfternoon]

I was truly hoping mum could stay in the only home she has known throughout her 52 married years but 7 years into her dementia journey things are becoming harder each day.

She's doing well in a lot of ways, she's mainly continent (apart from the odd accident here and there), takes herself to the toilet with a little assistance at times, can feed herself and drink from normal cups etc (she can not make any food or drink for herself though), still knows who we are etc but she is very confused at times. Apart from the two days a week she goes to a day centre (where she does really well) she is just sleeping on/off on the sofa throughout the day.

Tbh, my biggest worry is my 83 year old dad. He is not a natural born carer and very much struggles with his role as carer. I pop in 5 days a week and my sister 3 days. We also have a carer in every morning for an hour to shower and dress mum but it's not enough. The truth is that dad can't cope. I totally understand as mum is basically like a toddler now. This would be hard on the hardiest of carers let alone an elderly man who has never cared for anyone let alone his wife of 50+ years.

My dad will not pay out for any other help, the carer is paid for by mums AA and dad pays for the two days centre sessions but he moans every day about the cost and refuses to pay for anything else (despite having £££££'s in savings).

I think deep down he would like mum in a home and as much as I hate the thought of her in care the truth is I'm struggling to cope with one parent with dementia and another in deep depression as well as trying to deal with my own anxiety/depression/chronic health issues and my own dc and life.

I am currently out of work due to my health issues but will need to return to work soon due to lack of money. I worry how my dad will cope once I am unable to pop in 5 days a week, he struggles now.

But the guilt is overwhelming, I've done all I can over the last 6 years but it's now destroying me (well, all of us). It's not mum's fault, she didn't ask to get this wicked disease and I know she'd love to stay in her home but we have no choice, do we?

You should feel no guilt whatsoever.
Perhaps your dad could have made more effort, but men often get to say 'it's too hard' when women don't.
Be clear with him. The current situation cannot continue. He either needs to pay for her care at home, and become more involved, or pay for her care in a specialist facility. He cannot bury his head in the sand to the detriment of everyone else.

I understand exactly how you feel as I had to make a similar decision for my DM. I tried to care for her at home after she suffered a major stroke because I believed she would recover, but I quickly realised she was far too unsafe left alone, even for a short time, because she would do such random dangerous things. She lost all sense of reason. I had to accept that she was just too damaged and it was simply impossible to manage her at home.
I absolutely hated doing it to her and felt terribly guilty, but she ended up living for another 10 years, so I wouldn't have had any sort of life of my own had I carried on, and I don't think she would actually have wanted that for me.
It does cost an absolute fortune to have someone in care, we were paying over £1500 a week for mum, and we were lucky to find an excellent reasonably priced independent nursing home.
It will be really hard for your dad, he must be so sad he's losing his wife and frustrated at the difficulty of coping, the reality of the cost of care must just feel like adding insult to injury to him.
I'm sorry you're going through this, I can remember how stressful it was making that difficult decision, but you must look after yourself as well xxx

Realistically there is little you and your siblings can do. Your DM has a diagnosis of dementia and possibly lack of capacity has been formally confirmed.

Your DF will be next of kin and if there is a power of attorney he is likely to be the lead attorney on that document.

Neither you, your siblings or indeed social services can force him to put her into a care home or fund more care at home anymore than she can be forced to accept such care even without capacity.

Your only option would be to turn to the Court of Protection for a ruling. Not a step taken lightly by anyone.

So your dad doesn’t want to/cannot care for her himself but doesn’t want to pay either even though he can. I can see why you are
frustrated!

What is he holding onto the ££££ savings for, presumably without paying for care most of it would go to you and your sister as inheritance? Could you and your sister persuade him to pay by framing it as your inheritance being spent rather than his savings?? So you’d say, “we’d rather mum goes into a good home and we can all get our lives back and reduce the stress, than inherit. That’s our choice”. I don’t know if that will work though if he just believes on principle that he shouldn’t have to pay.

Another option but a nuclear one is that you and your sister stop or massively reduce your visits. Maybe that would push him from “this is just about working” to “this is unmanageable” and he might accept that paying for residential care is the only way. But obviously that is very much a nuclear option and would lead to a lot of bad feeling and possibly risks in the meantime.

I can’t see a solution other than continue to work on him to agree. But you should definitely feel no guilt about taking the residential care option, if you can persuade your dad.

My sister, my dad and myself are all joint POA. I know that I could possibly overrule a decision and place mum in care but tbh I don't want to do that as it would cause me so much anguish/stress. and it should be a joint decision (my sister will always side with my dad as she just wants peace).

In all honesty, atm I would like my mum to be cared for in her own home.

My parents live in a large house with an area which is like an annexe (bedroom, lounge/kitchenette and shower-room), it could be completely shut off from the rest of the house (and would still leave my parents with a nice sized two bed property for themselves). It even has it's own external door, it would be perfect for a live in carer and they have enough funds to pay but dad point blank refuses.

I am constantly up against it with my father, that is the most frustrating thing out of all of this. But I also know my dad from old and I know he will hate my mum being put in care and end up refusing to visit as it will be too hard on him (everything is always about him).

Tbh, I really am not quite sure why he is hoarding onto all the money. One minute he says it's because he needs it all for mum's care then the next he's moaning about how much care costs and how he doesn't want to pay the extra VAT etc on mum day centre fees and refuses to pay out for anything which may potentially make their lives easier. I am sure if it were all free he would agree to everything going.

He doesn't care about inheritance for my sister and I, he has told us before that he doesn't care what happens to the money once he dies (ie if there is anything left for my dsis and I).

If the truth be told I think it's because he likes seeing everything on his portfolio and they live off the interest from the investments. The majority of the money is, in theory, my mums. When her parents died mum inherited my grandparents house and investments. The house was sold and the money invested, that was 25 years ago and he has happily watched the investments grow and grow since then. He took it upon himself to see the money as 'their' money.

Even if I stopped the visits, my sister won't she will always do as my dad asks. I go for my mum as she was a lovely caring mum. I do it all for her.

It sounds like he has developed a miser mindset 😔 I don’t know what you can do about that

I completely understand you wouldn’t want to stop the visits for your mum’s sake, it would only be as a temporary measure to try to push him into accepting care but appreciate it would affect her the most during that time 😔 and it might not even work.

MovingSwiftlyOn Thank you xx

NormalKartoffein I do need to sit down, gently explain that burying his head in the sand is causing many issues and try to get him to agree to some kind of long term plan. He is so hard to deal with at times and will agree to one thing one day and change his mind the next. It wouldn't surprise me if he puts off viewing this care home next week.

Thanks everyone.

I know I need to do these things but dad is such a pain in the arse at times that I end up internalising all my anguish/frustrations over it for fear of ending up in argumentative state that I end up feeling so unwell. He knows I am unwell but will never comment on it but as soon as he is poorly we all know about it, for days. He cut his finger on a knife on Sunday, not pleasant for him but it was just a normal cut that a plaster couldn't put right but he insisted that I get him an appointment at the GP on Monday. The nurse has 'dressed' it which is just a simple white plaster and I have to sit with mum this afternoon whilst he has it taken off. He also purchased a clear pvc finger stall and walks around like he has had some kind of major industrial accident. I know I sound horribly uncaring (I really am not) but he is such hard work.

I actually ended up falling out with him last year. Mum had a breast cancer diagnosis in March and the stress of this was too much. I ended up having a huge row with him when he decided to burn his old sofa in his garden (built up area) simply because he would not pay £100 to have the council take it away. He would have rather poisoned everyone around him than break into his half a million ffs! He blamed me for everything and said I had upset my mum and told me to never come round again. He didn't speak to me for a week and I ended up having to go back and grovel just so I could see mum. I have not really forgiven him for that. I did everything for mum when she was diagnosed. I went with her whilst she had her mammogram, the ultrasound scan and the biopsy. I have gone to every follow up and sort all her medications. My dad has never once thanked me.

I would have got to the point of a major argument numerous times tbh OP, you are a much more patient person than me. That is awful that he used access to your mum as a punishment for having told him he’s acting badly.

Just re read the OP and I see your visits will have to stop soon anyway. Could you suggest that the council do a care assessment once you are back at work to see how he/they are managing? (Sounds like it will become very difficult at that point). Maybe have a separate word with the council and explain the situation - he might listen to them more if they say she needs residential care?

I think I recognise your story, have you posted about your parents before, with maybe more financial detail and harsher responses towards your dad? I'm sorry to hear things are still so hard. x

I have arranged for SS to do assessments. We have had 3 over the last 6 years, the last was via telephone last year. Tbh, as soon as they learn my parents have well over the £23500 threshold they can offer no help at all. They are helpful in the fact they give out leaflets etc for local help (carers, day centres etc) but as soon as dad realises he has to pay he is simply not interested and will make any excuse possible not to go down that road. It took me three years to persuade him to have the carer in for an hour each morning.

I have started a few threads in the past. As you can see, I am still no nearer an ideal situation with it all, still an uphill struggle 😩

Sad to say it was our experience of social services too - the moment we said my MIL had over £23k in the bank, they basically shrugged their shoulders and told us to contact private care providers - not remotely interested in anything at all, fobbed us off when we asked for an assessment by saying they had a very long waiting list and it could be months.

Your dad sounds quite unpleasant.

He can of course make his bed, but he'll have to lie in it.

They really aren't interested at all.
I rang them pleading, explaining my dad wasn't coping etc but they really weren't at all interested. They said they could only offer a telephone appointment and even then it was 5 months later.

No organisation seems to want to help you when you or your lo has dementia. The dementia team at the hospital were great when mum was first diagnosed then covid hit and her appointments became less frequent until we received a letter stating mum had been discharged into the care of the GP surgery. GP has no interest or knowledge of dementia care.

He really can be at times but then he can also be chatty and lovely at times. He is hard work.

However, I do love him, he's my dad after all but let's just say, if he had been a friend I would have binned him off years ago!

I wonder what would happen if you were up front and said you are not looking for any publicly funded care, all you want is a report that will help persuade your dad put his hand in his pocket.

Might still get no interest but it’s possible they might be more inclined to help if they know it’s a one off rather than ongoing.

Honestly, going by your previous posts, unless you stop being at their beck and call nothing will change. Why would your dad pay for anything when you’ll do it all for free?

Nope, we made it clear to SS that we knew we'd be self funding and wasn't looking for taxpayer paid help, but they just weren't interest at all, no help whatsoever, just told us to talk to private care providers. That was three different phone calls over a couple of weeks, as the private care providers we asked said they'd prefer a formal assessment before offering us services. Passed from pillar to post!

I completely understand and empathise with you. It's a path I've walked and it's crap

Oh FFS. What a system - sorry.

My mum had to recently go into a home at 86. She loves it there and is cared for so well. I don't feel the guilt at all now because I know it is the best place for her to be. When I visit now I spent quality time with her when before at home I was helping with washing, dressing, house work which I didn't mind doing but there never seemed enough time just to sit chatting with a cup of tea. Now we have all the quality time in the world together.

I did pre warn the social prescriber that dad was super tight fisted and sure enough when she visited and started to mention a few organisations and places to go etc, the first thing my dad asked was if he'd have to pay for these services and when she said yes he screwed up his face!
She kind of shrugged because there is nothing they can do other than offer up these paid for services.

I know, in writing it looks a simple solution just step back and he'll see what we actually do but I've tried this and mum's care slacks. She ends up in the same clothes for days or unwashed hair etc or their father washing piles up. We have to prompt dad to do these things or help out ourselves. It's easier said than done.
SS don't care as it's not seen as complete neglect, plenty of people live like that but my mum was clean and smart and always took care of herself. I do all if this for her.

That's exactly our situation. It drives you to distraction doesn't it?