Page 5 | Sister & I differ on whether our Dad should remain in a home

User125179313 · 2023-10-30T15:26:18+00:00

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 🙏

JussathoB · 30/10/2023 20:01

I’m worried that your father has gone past the point where he could really manage in a retirement flat with a couple of carer visits.
Also there’s no guarantee he wouldn’t be depressed if you moved him into one. Wherever he moves will be a shock to his system as he is leaving his own home.
perhaps speak to the staff at the home about his feelings and see if they can help him settle in?

iamwhatiam23 · 30/10/2023 20:03

He will get used to it in time! They are very often like this at first. Do not move him. It will be a nightmare for you! His dementia will progress and you will have to find him another home in the end anyway!

JussathoB · 30/10/2023 20:04

I’m a bit confused by POs saying he has capacity. I don’t think you can use power of attorney unless the person does not have capacity. Also if he had capacity, and said he didn’t want to go to a care home, no one should have made him go?

TheShellBeach · 30/10/2023 20:05

JussathoB · 30/10/2023 20:04

I’m a bit confused by POs saying he has capacity. I don’t think you can use power of attorney unless the person does not have capacity. Also if he had capacity, and said he didn’t want to go to a care home, no one should have made him go?

OP has said that he went voluntarily

TheShellBeach · 30/10/2023 20:07

OP he's already been incontinent at night at your house.

Ask the home how often this has happened there.

WhiteArsenic · 30/10/2023 20:17

Another thing to consider could be his communication as his dementia advances. You say his brother is in his home country, so I just wondered at what age he moved here and how good his English is. Sometimes people with dementia lose languages they learned later in life and do better if they can communicate with their mother tongue. Not saying this should alter your priorities, just pointing this out as a possible factor.

mum11970 · 30/10/2023 20:29

Stroopwaffels · 30/10/2023 17:09

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.

Absolutely sums life with dementia exactly ⬆️

I too have used the overgrown toddler analogy when trying to explain how much supervision my father needs. He has managed to lock himself outside in his underwear in the middle of winter in the past and I dread to think of the outcome if he lived alone.

unsync · 30/10/2023 21:48

With your further updates, it does seem his illness is more than mild. If you decide he is safer in a care home, check https://www.cqc.org.uk/ to find the best one for his needs. You can also use it to find care providers. Good luck.

Care Quality Commission

https://www.cqc.org.uk

MereDintofPandiculation · 31/10/2023 09:46

If your dad has already had an accident at night in bed, has got lost in the street, and cannot feed himself reliably or take his meds without supervision, then his dementia is not early or mild. Not necessarily. My dad was all over the place with food and meds, but his diagnosis came back as “mild cognitive impairment “, not even mild dementia. The soiling may be a one-off, and he got lost in an unfamiliar area. It would be different if he got lost between home and the corner shop where he picks up his newspaper. So while OP’s dad may have moderate dementia, I don’t think that’s necessary true of everyone with the symptoms you picked up on.

Safety is paramount and sadly, unhappiness often comes with the territory wherever they are. Why is safety paramount? Is it not torture to keep someone alive to endure yet more years of a life they hate?

Stroopwaffels · 31/10/2023 12:59

Why is safety paramount? Is it not torture to keep someone alive to endure yet more years of a life they hate?

Well there's a wider philosophical debate there, isn't there? But social services cannot and will not allow someone to remain in a situation where they are actively endangering themselves by not taking medication or wandering off, or endangering others by leaving the gas on. It's all very well to say that people should make their own decisions about how they live and where they live, but people with dementia are not mentally able to do that. If you'd asked Dad what he wanted, he'd have said he wanted to go home. But "home" meant back to his childhood home, with his mum and dad who died in the 1980s.

Original poster

User125179313 · 31/10/2023 15:57

TheShellBeach · 30/10/2023 19:05

Has your uncle got any experience of dementia care?

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Nope he has no experience. He just basically wants him over there with him but has no real idea of dementia care

OP posts:

Original poster

User125179313 · 31/10/2023 16:02

WhiteArsenic · 30/10/2023 20:17

Another thing to consider could be his communication as his dementia advances. You say his brother is in his home country, so I just wondered at what age he moved here and how good his English is. Sometimes people with dementia lose languages they learned later in life and do better if they can communicate with their mother tongue. Not saying this should alter your priorities, just pointing this out as a possible factor.

This is an interesting point. Whilst he has been in the UK for significantly longer than his home country, his English speaking & understanding seems to have deteriorated whilst his understanding of his native language appears perfectly fine.

OP posts:

viques · 31/10/2023 16:29

User125179313 · 31/10/2023 16:02

This is an interesting point. Whilst he has been in the UK for significantly longer than his home country, his English speaking & understanding seems to have deteriorated whilst his understanding of his native language appears perfectly fine.

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Do the staff and other residents in the current home reflect and acknowledge his home culture to some degree? Could this be part of the problem that he feels he isn’t part of that community?

TheShellBeach · 31/10/2023 18:46

User125179313 · 31/10/2023 16:02

This is an interesting point. Whilst he has been in the UK for significantly longer than his home country, his English speaking & understanding seems to have deteriorated whilst his understanding of his native language appears perfectly fine.

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Because he can remember things from a very long time ago, but more recent stuff is being wiped out of his memory.

TheShellBeach · 31/10/2023 18:49

I do wonder if your uncle would actually cope with your dad as he deteriorates.

Dementia is progressive and your uncle might not realise how impaired your dad was getting, if he went back to his home country.

Original poster

User125179313 · 31/10/2023 19:08

viques · 31/10/2023 16:29

Do the staff and other residents in the current home reflect and acknowledge his home culture to some degree? Could this be part of the problem that he feels he isn’t part of that community?

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There are a couple of members of staff from his country there so they have been speaking to him in his language which I think helps. No residents from his country though and I do wonder if he would feel more comfortable with more people of the same culture but I don’t know how to make that better for him.

OP posts:

Original poster

User125179313 · 31/10/2023 19:10

TheShellBeach · 31/10/2023 18:49

I do wonder if your uncle would actually cope with your dad as he deteriorates.

Dementia is progressive and your uncle might not realise how impaired your dad was getting, if he went back to his home country.

Edited

I don’t think he would cope as the dementia gets worse. My uncle is getting older too so may get to the point when he can no longer help my dad and I don’t think it’s fair to then rely on other family members which is one of the reason why my sister & I don’t think he should move back there

OP posts:

cptartapp · 31/10/2023 19:18

MereDintofPandiculation · 31/10/2023 09:46

If your dad has already had an accident at night in bed, has got lost in the street, and cannot feed himself reliably or take his meds without supervision, then his dementia is not early or mild. Not necessarily. My dad was all over the place with food and meds, but his diagnosis came back as “mild cognitive impairment “, not even mild dementia. The soiling may be a one-off, and he got lost in an unfamiliar area. It would be different if he got lost between home and the corner shop where he picks up his newspaper. So while OP’s dad may have moderate dementia, I don’t think that’s necessary true of everyone with the symptoms you picked up on.

Safety is paramount and sadly, unhappiness often comes with the territory wherever they are. Why is safety paramount? Is it not torture to keep someone alive to endure yet more years of a life they hate?

Edited

He can stop taking his medication if he wants to die. Could have stopped at diagnosis. As he became older, frailer. Speed the process up. But people don't.
The alternative to not keeping people safe is leaving them free to roam in front of a car and break both legs, fall downstairs and sustain a head injury, set themselves on fire with the gas at home......

TheShellBeach · 31/10/2023 19:46

User125179313 · 31/10/2023 19:10

I don’t think he would cope as the dementia gets worse. My uncle is getting older too so may get to the point when he can no longer help my dad and I don’t think it’s fair to then rely on other family members which is one of the reason why my sister & I don’t think he should move back there

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I agree. Apart from your uncle's probable inability to give suitable support, you and your sister would doubtless feel nothing but panic if your dad was not in this country.

GETTINGLIKEMYMOTHER · 01/11/2023 08:38

I’ll start by saying that I’ve been through dementia from start to finish twice - my FiL and my DM.

It’s worth remembering that dementia is only ever going to get worse. If you move him back home, then unless he dies first (sorry to be blunt) there will sooner or later come a point where he will certainly need 24/7 care and supervision.

Personally, I’d think that moving him to somewhere completely new, like a retirement flat, would be a very bad idea, since familiarity is very important in dementia, and a new environment could completely throw him. Plus I’ve heard more than once of people being asked to leave retirement flats, because as their dementia worsened, they were starting to bother other residents - continually locking themselves out, banging on other people’s doors at 2 am, etc.
If you do go for that option however, FGS rent one rather than buying, because they can be an absolute bugger to sell, and even if it takes 2 years after he’s left, you will still have to pay the very hefty service/maintenance charges.

Gardengirl108 · 01/11/2023 08:54

if the decision is made to move your father back home with carers in place, do consider applying for attendance allowance for him. It’s not means tested and will help with the cost of the carers. https://www.gov.uk/attendance-allowance

Attendance Allowance

Attendance Allowance helps pay for your personal care if you've reached State Pension age and are disabled - rates, eligibility, apply, claim form AA1.

https://www.gov.uk/attendance-allowance

CameleonAreFightingBack · 01/11/2023 10:32

This man has nowhere to go back home! He doesn’t have a home!!

The reality is that, even if he was to buy a house/flat now, I’m pretty sure he’d find hard to associate that place with ‘home’, let alone when dementia is going to get worse!

His error was to sell his house wo another one lined up. Wo being absolutely sure it was the right choice for him.

MereDintofPandiculation · 02/11/2023 08:41

His error was to sell his house wo another one lined up. That’s not a helpful comment. We can only ever do what seems to be the best at the time. Old age is never predictable on a month to month basis - yes it’s inevitable decline, but not a smooth decline, it goes in fits and starts, and you don’t know what will go faster, body or mind. There’s no point in looking back and saying “we shouldn’t have done this”

Ballsbaill · 10/11/2023 19:09

SausageMonkey2 · 30/10/2023 15:31

Respect your dads wishes.

If I'd respected my mums wishes I'd have ended her full time carer neglecting my job and possibly losing it. Sometimes life isn't this simple.

OP who looks after your dad: making sure he takes meds etc? You or her?