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 🙏

He’s 87 with dementia. As someone who had a mum in a similar position I would keep him in the care home. His dementia will only get worse and carers can’t be there the whole time - you will be constantly worried he is leaving the oven on, falling over, etc, or becoming like my mum and going wandering at night and getting picked up by the police. It’s distressing for them and for you. Totally beside the point, but since you mention them, retirement flats are a nightmare to get rid of - we haven’t shifted my mums yet and it’s been years now..

You can stay at home until the end. Initially cheaper than a care home but then comes more expensive. He can take a specialist equity release loan if funds get low and eventually the council do kick in pay once it is all medical.

Are there people in the home at his stage? It's only been a week. He might make friends and find he likes it.

As dementia progresses, you will need to do what is best for him - not necessarily what he wants.

You say it is mild and he needs support with most daily activities... that will probably mean carers multiple times a day.

Is he safe at home? What if somebody knocks the door to sell him something? Does he go out - what if he gets confused or lost?

Also, how often can you get there to help, to keep an eye out for deterioration?

It's not a nice decision to have to make, especially if it's not what he wants, but you have to put his needs ahead of your feelings.

Talk to your sibling... you need to support each other as it's going to get harder.

It sounds like he still has capacity. You should respect his wishes and facilitate him living at home. Even if he has lost capacity, you should respect his wishes. If he is still fairly autonomous, use carers and then as he needs more support, you can move towards a live in carer. Join the Mobilise fb group, lots of advice and help for carers there. Have you applied for Attendance Allowance for him?

Where did your mum go? If he leaves the care home is he for a rented property or will he be buying?
Back in a community setting will there be expectations of you and dsis to support? Shopping, appointments etc?

Gosh OP that last update is a bit of a big one. So he's going through a separation and the house has already been sold and he's just tried living in another country but only lasted a few weeks. All v v stressful events.

I would say you and your sister need to discuss with him that he needs to give it a few weeks. And that, if he doesn't like the home what are the specific reasons. Presumably he would rather be back in his old home with his wife but that life is not possible now.

You need a social service's assessment as to his needs now and in the near future. They deal with elderly people all the time and know how this usually progresses and what his options are. Let them guide you.

If you found him somewhere else to live, it would not feel familiar to him, and he would probably wander off, looking for "home".

Do you really think it would be the kindest thing for him to be in this kind of situation?

He needs to be somewhere safe.

He is safe in the home he's in right now.

His dementia is going to get worse. Much, much worse.

It sounds to me like he's yearning for something which is no longer realistic or attainable.

So, moving back into his old house isn’t an option because it has been sold? Does he understand this?

I’m really not sure what the question is - he can’t go home with carers because the house has been sold. He could go back to his home country where he does own property, but he only stuck that out a week before. Or he could stay in the care home.

Me too. If you move him home with carers at some stage it will become too difficult, and then you will be forced to move him back into a home which will be even more distressing as his dementia progresses.

It’s unlikely that assisted living would have him with dementia

Not all care homes are the same. You may need to check a few to find one which suits his needs and current health.

If he is recently separated I would think putting him in a flat with a couple of care visits a day for an hour and few other visitor would be even more depressing for him. Has he seen a dr as he may be prescribed anti depressants. Some older people need them as they have little to look forward to especially if you have dementia - my mum has been on them since her mid 80s.

Where do you want him to go @User125179313? It sounds like he has nowhere to go so needs to stay in the hime for now.

@User125179313
OP what does your uncle say about this?
I'm assuming he saw your dad for the three weeks he was in his home country?
He must have a view on this. And what reasons did your dad give for returning here so quickly?

It’s unlikely that assisted living would have him with dementia

This.
This is true.

so at the age of 87 his marriage has broken down, his house has been sold, he’s moved abroad & come back & he’s been diagnosed with dementia? Any one of those is massive, together anyone dementia or not would be overwhelmed

He needs to be assessed by social services. I can’t see how he can go “home” because there is no home anymore. Does he understand this?

@User125179313 It sounds like he has capacity to make his own decisions so legally you have to let him, and he again legally has the right to make decisions which we think are wrong. He needs.a.decision specific capacity assessment by a social work or Gp otherwise legally you are depriving him of his liberty and what's more, spending his money without his specific agreement. Power of attorney for health or finace does not come into action as it were until a person is deemed not to have capacity for any reason, amd you can have one in place without the other. The threshold for being deemed not to have capacity is actually surprisingly low. You both need support with this or you leave yourself open to having action taken against you.

As to when money runs out, the council/social services will ax him. They may decide he is too good to be cared for in a home and will fine him vaguely appropriate accommodation and set up carers for as long as he can be managed at home. They may decide he needs a care home but won't pay the prices of the care home where he is- either they will then move him somewhere or you will need to pay the top-fee which can be hundreds. I would recommend you both seek further advice to protect the both of you and him

If he lived with you for a week how well did he cope with a new environment? Could he make his own drinks and snacks, wash and dress himself independently, did he do his own washing, entertain himself etc or was he very dependent on you?

Could you have happily left him there with a carer popping in to make lunch and dinner if you had to go away for a while?

What does your uncle say as he saw him recently?

We let my MIL stay home with carer visits for too long. One day she was found wandering a mile or two from home at 5am by a passing police patrol. I can't bear to think what might have happened had they not seen her and taken her to hospital.

Get advice. Have your father assessed professionally, and ask the care manager what they think about his condition.

After reading your second post, OP, a home may be the best place. Otherwise he's just chopping and changing his mind every few weeks. Perhaps bit the ine he's in, and perhaps you can arrange for somewhere that he had more autonomy.

Oh OP, sorry, but I’m with your sister.

sorry this is long..

We unfortunately made the mistake of a retirement flat between house and care home for my MIL. If we had known how it would be, we would have skipped the hassle of the flat.

It’s a nice idea to think it will give dementia sufferers more independence for longer, but decline takes hold - sometimes in surprising ways that catch everyone off guard. It can get to a point quickly where it’s dangerous for the person to spend much of the day alone and in their own care.

We realised my MIL just used to spend her days confused on her own, moving things around from place to place in her flat. She started wandering really suddenly and her carers (once in morning and once in evening) used to stick a meal in the microwave and then leave so they went uneaten. That carer setup was as expensive as a care home!!

Now, she spends her days in the care home with constant support and company on tap when she wants or needs it and 3 good meals a day. Everyone is happier, most importantly her (although not took a while to settle).

I really get where you are coming from and it’s such a hard decision to make not having been through it before. Dementia is such a sad illness so I understand you wanting to give your Dad as much independence as possible for as long as possible, but from someone who has been there, if he has the opportunity to live in a care home with a good support structure and a dementia focus I’d 100% just get him settled in there. That said, assuming he’s under NHS dementia care - what are their thoughts? Good luck with whatever you decide.

Most people in the home are in wheelchairs and use walking frames which seems to make him more depressed. But you’re right, it’s still early days.

And what does your uncle abroad think about this?

Thank you. Yes he’s receiving attendance allowance

In my experience most people with dementia THINK they can look after themselves perfectly well, it’s part of what makes the illness so horrible, as in their mind they’re perfectly fine, but that really doesn’t mean they can look after themselves even with carers coming in.

it sounds like he doesn’t know whether he’s coming or going bless him, I’d be inclined to try and encourage him to give it a few weeks in the home before he makes any decisions to see how he gets on.

it doesn’t sound like he’s be happy anywhere in his current state of mind though.