Is this fair to DF?

[user563846]

DF has dementia and physical needs. DM has been looking after him at home with some help from a carer and from DSis who lives nearby with her family. I’m a long way away.

DF’s needs have increased over the last year. He now needs either to go into a care home or to have live in carers. The house is large and they have lots of money so live in carers would be an option. If he went to a care home, DSis would move into the house and DM would move somewhere smaller.

DM wants him to go into a care home. DF doesn’t want to. He’s always expressed the desire to be at home and hates the idea of a care home. He has tried a couple of ‘respite’ stays and didn’t like it. He’s losing capacity pretty fast.

I feel really sorry for DF. But it’s also clear that having carers around all the time would drive DM crazy.

Having been through this with my parents, I think unless you're there day in day out dealing with the absolute shit show that is a loved one with dementia when it gets really bad, your opinion counts for absolutely nothing. And you shouldn't listen to your DF either. There will be no respite for your mother and sister whilst he remains at home even with live in carers. Making the decision to put my mother in a nursing home when she got bad turned out to be the best decision we could have made. Even my brother who lived abroad and wasn't involved on a daily basis came to realise that in the end.

please support your mother and sister in what they think is the right thing to do.

This Is so accurate. If OP gives her strong opinion on this she could end up annoying her mother and sisters as they are the ones dealing daily with this.

One reason I’m finding it hard is I’ve seen live in carers work very well for another family member. However good a care home, I don’t think they can match that level of care.

One option would be for DF to remain at home with live in carers and DM to move to a smaller house (as she would be doing anyway if DF went into the care home).

Sorry to hear you had such a miserable experience, thanks for sharing. When you say there would be no respite with live in carers, I was wondering why this was?

I agree with other posters unfortunately there is no great solution and even if the in home care solution was used now eventually he would likely still have to move to a home. DF can seem quite coherent when he spends a short amount of time with people, it’s only when you spend time with him you realise how much his reasoning and capacity has reduced.

The bit I am confused over is why Dsis would move to their house and DM to a smaller one.

what about sheltered housing or a place they can move into together that is attached to/adjoining a care home or somwthimg so he could be taken into the main building during the day and she could potter in and out?

Does your df have capacity? If not, does your dm or you have power of attorney If he is deemed to have capacity it is his choice.
@hatgirl and @emmagrundyforpm I believe are experts here.
Age uk or your local adult social care social workers can advise.
we had the same with fil- who decided to stay at home after saying he would go into s care home. Poor mil’s health was destroyed.

i think that could work for DF but not sure about DM. She is in her early seventies and very fit and healthy. There’s nothing like that very locally so they’d have to relocate too. Worth looking in to, thank.

DM doesnt want to live in the house on her own, it’s too big.

Live in carers are costly and you need a team to cover round the clock care. A care home will have multiple staff always on duty.

I've said this before on similar threads, but there is often a presumption that you have to comply with what the older person with dementia says they want, at whatever cost (not just financial) and regardless of what anyone else wants or needs. It's very common for older patients to deny needing any help or lifestyle changes and rejecting any offer of them. Remember that your dad can't just say 'I want this' and expect everyone to make that happen. He'll have to compromise which may involve carers or residential care. Don't then feel you've let him down by not doing what he asks for. Everyone has to compromise at times all the way through life and it's no different for dementia patients, even though it's difficult for them to recognise anyone's wishes beyond their own.

DF has capacity at the moment I would think but declining. He has P of As set up which name DM, with DSis and me as reserves.

It’s a really tricky situation because I think what’s best for him/what he wants is different to what’s best for DM/what she wants. Once he no longer has capacity, can she use P of A to put him in the care home even though she knows it’s not what he wants?

When diagnosed with early stage dementia, he was clear that he would accept live in care rather than go to a care home. He’s maintained this view. I’m aware of the costs involved with live in care and have seen it done successfully with another relative - but that relative’s partner has already died which made it simpler in some ways.

Is your sister going to buy the house from your parents?

As others have said if you’re not there day in day out with the dementia patient you really have to listen to those who are and respect their wishes. Also it’s far better for him to move into the home while he still retains some capacity as if you wait until he’s badly deteriorated he will find navigation around the new home very disorientating.

I appreciate DM and DSis have done a lot for him and things need to change. DM has had enough and won’t cope living with him and carers. But I’m not sure he has to go into a care home? He has the money to be looked after full time at home. The intention would be for him to be at home until he dies. But DM doesn’t want to be in a house with live in carers so maybe she moves out?

Don’t know, not discussed

I think he’s bound to need a care home in the longer term; I doubt at home care is possible without extraordinary effort - to cover the shifts and random happenings, also he may start to wander.
So I would have the bigger discussion about their home; why would it not be sold to pay for care? You need to know the reasoning behind your sister moving in - does she think this will prevent it being seen as an asset? If you are acting as PoA you’ll both need to act in your parents interest so this will come up before too long.

I don’t think he’s bound to need a care home. It will be expensive and require multiple carers but he has the money and space and there are companies which provide this. He has also been clear that he doesn’t want his life ‘prolonged’ - he wants to die at home.

There’s lots of admin and management involved in full time home care, plus all the existing house bills and upkeep. Would you expect your DM to manage this on top of her own home ( if she moves )?
Home care for one person is often more expensive than a care home. It doesn’t sound as though money is an issue but your DM may also need paid for care in the future so that needs to be considered.

Honestly in this situation there are no winners. Keeping your DF at home is not what your DM or Dais think is right and they are the ones actually doing the day to day caring. Your DF may be marginally happier to stay at home but the material cost to everyone else is very high.

I know you’re only trying to do the right thing for your DF but you seriously risk alienating your DM and Dsis if you push this too hard.

It is horrible watching someone you love lose their mental faculties and worse not know it’s happening. Your DM deserves some peace. It sounds like she has tried hard to keep him home.

They don’t need to sell the house, they have lots of money. I think my DSis would move in because it’s a nicer house than hers and to keep it in the family. Not sure what the financial arrangement would be but I don’t think there’s the intention to do anything sneaky re care home fees etc

From experience, as the dementia progresses he may become too complex for the type of care the at home providers can give. Can you find an at home care provider who will cover aggression, nursing care, wandering and escaping? This all happened with my previously gentle father in law and even most care homes wouldn’t take him.

I’m sorry you’re all going through this - it is a dreadful illness.

On the preservation of life issue. I believe it’s possible for your DF or his family to stipulate that he does not want to be brought into hospital or given treatment if he develops any medical illness in a care home. I think it’s also possible to request no assisted feeding.

It's a tricky point because the attorney is supposed to act according to the person's wishes, but also to be guided by what's in their best interests. This can lead to real difficulty with someone like a dementia patient who can have firm ideas about what they want but that others think aren't actually best for them. It isn't that the attorney can just overrule them and do whatever they want, though.

You've said it's a large house. Would it be feasible to have your dad and his live in carers occupying space while leaving other space clear so your mum could occupy that herself? I am sceptical about the live in carers because I can't imagine it being an arrangement that lifts responsibility entirely from your mum. But I didn't have live in carers in place when I was doing this for my dad, and you've seen it in action, so I may be wrong.

Do your mum and dad own the house and their savings jointly? It may be worth looking at how that breaks down. In saying they have 'plenty of money', they may well do but potentially only half of that is for use on your dad's care.

Wow, so you’re really not caring about your mum or what’s in her best interests? Just what your dad wants?
How would your mum ‘moving out’ look like? Divorce and selling the marital home? Why should she be the one to move out? She moves out and your sisters takes her mums home?

Yes, the house could easily be divided, I think that’s a good idea.

The live in carers arrangement I’ve seen works really well. But it is a different situation - the relative’s partner is dead and the arrangement is managed by the son who lives about an hour away. So he has a degree of separation that DM wouldn’t have and maybe it wouldn’t work for her because she’d feel she had to ‘keep an eye on things’ all the time. Her having a separate area of the house would help with that hopefully but I think she’d still find it difficult if she could hear he was unhappy. But I think it may be worth raising with her as an option.

The money is not an issue, which I realise is a very privileged situation to be in.