Sister & I differ on whether our Dad should remain in a home

[User125179313]

My Dad is 87 years old. Physically he is still quite active although we can see his movements becoming slower. He has dementia (mild at the moment), he needs someone to remind him to take his medication, to cook for him, order repeat prescription, wash his clothes and clean. He never wanted to go in a care home but has been in one for just over a week now (it's a long story as to how he ended up there but we told him it would be temporary). He wants to be in his own place with a carer going to see him a couple of times a day. I've been looking at retirement flats (although I believe they can be difficult to sell). My sister thinks there is no point in moving him and the care home is the best place for him and we should do our best to keep him there. I'm not so sure as he has been very depressed over the past week. He has enough money to last approx 8 years in the care home but I don't know what will happen if he runs out of money. We have also lied to him about how much the care home is costing because he hates the idea of spending all his money on a care home (we have power of attorney) and I don't feel comfortable about continuing to lie to him. Not sure what's best to do but any advice or opinions appreciated 🙏

It's up to him.

How many of those who say ‘if he wants to stay at home, he should stay at home’ have experienced looking after someone with dementia?

My father has Alzheimer’s and doesn’t want to go in to a home but as his dementia is getting worse he is getting more and more aggressive and becoming a safety risk to my mother, as well as himself and at some point he will, inevitability, have to go in to a home. What he wants will inevitably end up not being a consideration.

In answer to the OP, personally I would opt for staying in the care home.

One thing @User125179313 Having been in the same situation , I cannot tell you whether a care home or staying at home with carers is better but he may beyond a retirement home now.

I wish you well , we went through similar with DFIL.

I would get social services involved to make an assessment of his needs and how they might be met.

My MIL is beyond your DF in that she has extremely high care needs, multiple long care visits at home per day but even with that the impact on SIL is enormous. I/DH personally wouldn’t be in a place to provide the level of care my SIL does so it very much has to be down to the personal decision of the person doing that level of care. It has a very high price for SIL but one she is currently willing to pay because she is very linked to MIL.

Your DF isn't at that stage just yet but clearly with dementia it is coming. Really there are no right and wrong choices here just how you can manage his needs for the best. You have to be practical not idealistic. My other SIL struggles massively with the idea that MIL will be going into a home one day but she really, like us, is not part of the day to day caring so it won’t be her decision when that time comes.

This.
people saying it’s his decision are not the ones who will have to fight for another care home place six months from now when he is leaving the gas on and going wandering in the middle of the night when carers are not there.

Usually I'd be with you and getting him back home and with carers is a better option, but with dementia, I'd be a bit more cautious as inevitably, there will come a time when he has to go back into care anyway.

It might be that while he's still relatively okay, you discuss and agree it but that part of that discussion is the agreement than when it becomes unsustainable and unsafe to rely on external carers, he will have to go into a care home or assisted living of some sort?

I think thé issue isn’t whether the OP’s dad will go to a care home but when.

If this man has let’s say another 3~4 years where he would be safe at home with the right support, is it really fair to say he HAS TO stay in a care home?
On the other side, if his dementia is already relatively advanced and is getting worse quickly, then it makes sense.

First hand experience is he's better in the home. The earlier they go in the quicker they adapt. Grandparent with dementia insisted they didn't want to be in a home. Within 4 months went from 'mild' to ringing the police daily screaming that someone was coming into the house and stealing their stuff (promptly found thrown in bins and in odd places), leaving taps running, appliances on. It was dangerous. Very dangerous. And they were still most insistent they didn't need to be in a home and just wanted carers. Decision had to be taken out of their hands and it was traumatic for all involved.

The later they go into a home, often the quicker the decline will be. If your dads dementia is bad enough it's diagnosed then it's likely already the best place for him. If he's already there, keep him there. He's never going to want to be in there, but its best place for him.

Agree that the people saying "it's his decision" haven't been at the sharp end of this. Dementia is only going one way. As dementia progresses the person cannot be left to their own devices with a carer visiting morning and evening. They are not safe on their own if they cannot reliably remember to take medication, eat, turn appliances off etc etc.

Can he stay at home and bring in carers and assess safety in the house and make adaptions?

With money if he has savings as well as his home then he may fall in the bracket to pay which would hopefully buy him.choices.

My father isn't quite that bad yet but I "visit" him.for.lunch by dialling into his computer and creating a video call and we sit and have lunch together even though we are 100 miles apart. We have regular family get together with his adult grandchildren too.

So maybe with a mix of caring - local products for and family "visits" you'd be able to make staying at home a possibility.

I'm.sorry you are facing this. Its very difficult.

No, the ones saying it's his decision know the law.

The OP makes no suggestion he isn't able to make his own decision about this. He is the one suggesting he has carers twice a day which is perfectly reasonable and shows he has good insight into his needs.

The OP says his dementia is mild and just needs prompting with certain tasks otherwise be is managing fine.

The OP says he is very depressed at the care home.

Help him to come home.

If he needs to go back in future this can be arranged (usually very easily).

He may never need to go back, many people live at home safely for years with dementia, it is not inevitable he will end up leaving the gas on or wandering the streets like others say.

You cannot deny his right to decide where he lives when he is able to make this decision, based on worst case possible future scenarios. It would in fact be illegal to do so.

The crux is whether he has mental capacity to decide where he should live.
If he doesn't and you have POA for Health & Welfare, then you can legally make the decision for him, but you must consider his current and historical views & preferences and it should be the least restrictive option.
Therefore it seems like him returning home is the right thing to do if you think he can manage (for now) with visiting support. Also, explore Tec to maintain safety at home ( smoke alarms linked to Lifeline, etc). I'd suggest getting in touch with your local Adult Social Care for advice & assessment.

.............many people live at home safely for years with dementia

Not safely. Not at all. They might be at home but a relative has the terrible strain of keeping tabs on them.

And many dementia patients wander off, wearing unsuitable clothes. They get lost and get hypothermia.

They're much safer in a home.

If he can still do things for himself, and very much wants to be at home, I would say best at home but with carers. It sounds as if he had good funding so get Carer’s for an hour visit twice a day to take care of washing, meals, etc.

And better this way in his own home where things are familiar.

He can return to a care home if / when this arrangement becomes too difficult.

My BIL’s mum had dementia and stayed in her own home until she was 90. She was happy as Larry, died at home. They had regular carers, and eventually cctv so that BIL could monitor her.

Their happiness is paramount.

Agree with this or stay in his own home. He can have as many carers as he needs then

My dad had middle stage dementia. This is past the "just a wee bit forgetful" stage but not quite at the "incontinent and bed bound" stage. Even though he was still at home he could not be left for 5 minutes. He confused day/night, didn't recognise people, wouldn't remember what he'd done 5 minutes before so couldn't be trusted to remember medication, needed prompting to do everything from going to the loo to putting his shoes on. Sort of like a toddler - except a big, strong toddler who can't just be put in their cot when they are having a tantrum. We wouldn't ever consider it safe to leave a toddler on their own all day with someone popping in morning and evening and it's simply not safe to leave people with dementia either. It's not a steady decline, it's up and down, good days and bad days, the evenings are way worse than the mornings.

https://www.dementiauk.org/information-and-support/about-dementia/stages-of-dementia/

It's really hard OP and I think you are probably underestimating just how much care he is going to need going forward. He is going to need someone with him pretty much 24/7. Yes you can do that with a combination of carers, family and other help but it is RELENTLESS and you do not get a break, ever.

I would not feel bad about lying to your Dad. It is really common for people with dementia to obsess over cost of things, and going home (although they mean their childhood home not their current home) on a loop because you reassure them, they forget, the worry kicks in again.

Your Dad is SAFE in a home and that is the most important thing, keeping him safe. Agree that getting social services or a medical professional to do an assessment is the way to go as in my direct experience family tend to downplay just how bad things have got.

When my Dad was ill I found the cockroach cafe threads on here a huge comfort, you are most definitely not alone in this situation.

Who will be responsible for day to day emergencies, you or sister. Who gets all the phone calls from loved one with numerous imagined problems, where is tv remote, deals with the carers, fall alarm, who drops everything if a fall happens, ambulance can take 24 hours and more with him on the floor, who deals with the bills and all admin? I'm guessing your sister and she now can't cope. Unless you are the one bridging all the gaps, which will increase, then not sure you should be encouraging him to go back home.
Has he been judged as having capacity? Then of course he can make his own decisions no matter how bad they are as long as he and you handle the fall out, your sister has made it clear it won't be her.
I hope it works out whichever way it goes.

I did my best to look after my mother but one evening I was sitting next to my husband with tears dripping off my chin. He said ‘it is me or your mother’.
We found her a very good residential home who took her on trial. Social Services could not have been worse.
I had Power of Attorney so sold her house and used the money for the home.
Occasionally she would ask me when she was going home and I would ask if she still had her key. She would eventually find it and I would say ‘that’s good, you’ll be able to get in ok when the doctor says you are well enough’. She didn’t know the house had been sold.
i don’t normally lie but felt this was the kindest way to cope.

It doesn't sound like he actually needs much help at the moment, but I would talk to his Drs and ask for a reasonable idea of how quickly his dementia may progress and what this may look like for him. I would move him back home, with a care plan in place.

I think your sister is telling you she’s reached her limit.
Unless you’re prepared to shoulder more and more of the work and responsibilities I’d try hard to keep him in the home, unfortunately dementia will only get worse.

Thank you for all the replies. I really appreciate it. Unfortunately moving back to his home is not an option. My mum moved out in January and then we got a carer in once a day, five days a week. This worked out okay although my dad didn’t think he needed the care. He was quite depressed after my mum left and decided he wanted to sell the house and move to somewhere smaller, so we helped him with selling the house. We showed him various smaller properties & flats, none of which he liked (he refused a home). He then decided he wanted to move back to his home country. We didn’t agree with this however my uncle over there was adamant he could help him buy a house and arrange a live in carer as care over there is much cheaper than in the UK. He went back to his home country but decided to come back to the UK after three weeks. As he had nowhere to live he stayed with me for a week. It wasn’t feasible for him to stay any longer because I don’t have a spare room and had to give up my bedroom for him and sleep on the sofa. He agreed to then go into home on a temporary basis. So unfortunately now wherever he ends up will be new and unfamiliar 😥

Honestly, your sister has this figured out.
He's getting worse, he can't make reliable decisions.
He clearly needs proper care, which can be provided reliably by the home he's now in.

Yes it's unfamiliar but it will become less so as the weeks go on.

Let him settle in the home. Tell him you'll review the situation in three months.
I guarantee he'll have forgotten all about it by then.

Be at peace with where he is. He is safe there.

OP reading between the lines are you feeling guilt-tripped by someone over this? I had so many comments about how if I really loved my Dad i'd be there all the time, how parents cared for me and now I should be looking after them, how it's the least you should do etc etc etc.

You have to draw the line somewhere and put your hands up and just say you can't. Especially in the situation you are describing where he doesn't have a home to go back to, and can't be in yours.

Ok, given your update I think he should stay put. He doesn't have a place to go home to, didn't stick it out beyond a few weeks abroad and may just need time to settle in. Reassess in 4-6 weeks.