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.

I think you’ve misunderstood? DM is intending to move out if DF goes into a care home, she doesn’t want to be there on her own. She’s invited DSis to live there.

Sorry had definitely picked you up wrong! Had read it as “if dm doesn’t agree with 24hr care at home for df she needs to leave!”

Dementia is a cruel disease. I think some people have rose tinted glasses on when it comes to caring for these people at home. Some with dementia get very agitated and unsettled and this can be really hard to deal with. Your mum will probably not cope with this. I know I wouldn't. Having worked with dementia patients and their carers there have been times when nursing home is the kindest thing. I looked after my husband at home when he was dying from a brain tumour. The final stage was only two weeks but it was incredibly hard and disruptive even with carers as your life was no longer your own. Please listen to your mum and hear what she is saying.
It may be that he lasts at home for a while but it's more difficult to move them the more the dementia progresses.

There's a very good book called "the selfish pig's guide to caring" written by someone whose wife has dementia.
Worthwhile reading to get the carers perspective

If you’re going to offer this as a suggestion then I would say you need to be the one managing the carers no matter how difficult that might be from a distance unless your DPs are rich enough to hire a housekeeper or similar to manage that as well. It sounds like your DM has had enough and unless they live in a mansion I seriously doubt the house can be divided enough not to have a serious impact on DM of carers trooping in and out and of course going to her in the first instance for any issues.

Yes, I would offer to manage, you’re right that she has had enough.

You said your Mum doesn't want to live with carers and maybe she should move out...... That would not suit your father (which appears to be your main concern). People with dementia need familiarity so your Mum moving out would be a huge source of stress to him and I'm sure she wouldn't be a huge fan of leaving him alone in 'their home'. Unfortunately a care home is probably the best setting for your father. Mine had that decision removed from him when the hospital refused to discharge him home (lived alone) as he wouldn't be safe plus needs a nursing element which is not feasible at home even with live in carers. He's actually doing really well in the home (after spending the first few weeks asking when he'd be going home), gets loads of interaction with the staff and other residents, food is excellent, staff are amazing and they do all sorts of activities including a monthly trip to a local pub for lunch. I know it's hard but you have to consider your Mum when discussing the situation. Good luck.

DM must be absolutely exhausted.

I think it would be worth considering how you see this playing out if you do want to insist on your father having home care, and your DM persists in her wish for a care home. I mean, she just may not agree to what you are proposing - and as someone living in the house, that is her right. (I think one must accept that having him in the house, even with carers, and even if the house is divided, will undoubtedly perpetuate the very heavy mental load she is bearing - unless ‘divided’ basically means significantly restructured into two completely separate houses, which would require planning permission, building work etc, and unless you and sister take on all administrative responsibility for your father’s ‘divided’ part of the house, bills & maintenance etc and organising his nursing and medical care.)

Would you, instance, go so far as to report DM to social services, if she progresses the care home idea, on the basis that she is not acting in DF’s interests? What would happen if she simply refused point blank to live with him and the carers (as is her right)? Is the house jointly owned? If so, she could presumably insist on sale, to fund a new home for herself free from him. Or, would there be sufficient funds for her to move out and buy a new home, leaving him and the carers in the large home?

When you start working consequences through like this it all sounds extremely unpleasant; I would have thought a move to the care home, in accordance with DM’s wishes, would provide a much smoother end stage to your father’s life and their marriage without any potentially devastating family conflict.

Plus - and I’m saying this as someone who cares for elderly relatives- I would not be at all happy at intervention from someone who has not borne that daily burden and who does not fully understand the complexities of end stage dementia, how devastating it is, and the level of care needed and the mental load. I think you need to tread very carefully & with humility in this context.

Who is going to run the house if your mother moves out? Carers won’t. Is she supposed to do that and run her own home, or would your sister move in with your dad? Sorry I may have misunderstood.

My MIL had carers at home for four years. SIL lived around the corner. She still needed to go in most days to do things like the laundry, make sure there was food in the house for the carers to give to MIL and there was always some sort of query from them. If you are still living in the same house, I bet the carers do the bare minimum and it's all still on you. Edited - they weren't live in, but I bet they still don't do the laundry if they live in.

My father was in a care home for the last six months of his life (he didn't have dementia). I was constantly being called by the home and felt like it was a nursery and they were calling me about my son, not my dad!

So I am not sure either option is ideal but I think you probably have more freedom if the relative is in a care home, even if you visit most days.

Live in carers will do laundry, food shopping, arrange small household jobs. I’ve seen it work really well where there wasn’t anyone else living in the house. I can see that if there is someone else present then they would probably end up doing more of that themselves.

If he still has capacity then this is bullshit, you can’t just kidnap someone and have them incarcerated in a care home against their will! Only when his dementia is so advanced that he cannot make his own decisions can this be taken out of his hands and DOLs applied for. Imagine working your entire life, saving for a lovely house and then having someone try and tell you to get out of it to make their lives easier!

I couldn’t have put it better myself. People claiming that what ever the elderly person wants will be done despite the cost to anyone else.

Both my parents needed support, the care homes and sheltered accommodation would call and call and call me. A fall, parent was refusing her flat be cleaned, parent was upset and wasn’t eating. It was relentless, Siblings abroad making all sorts of ‘helpful’ suggestions which didn’t involve them doing anything at all because after all I was on the ground and ‘all you need to do is’.

I have seen live in carers work well for someone who previously lived alone.

I have, conversely, seen it work badly where there is also a much fitter and healthier partner still living in the house,

You have the latter scenario. I would suggest that the scenario of your father living in the house with carers and your mother buying a house elsewhere is - unless finances are genuinely unlimited - likely to prove prohibitively expensive. Live in carers plus house upkeep is about the same price as a good care home, and there would also be the cost of buying / renting / equipping a place for your mother to live.

Sorry OP I have been there and back with dementia in family members .

Your idea of live in caters is very idealistic ( you say you’ve seen it work very well , it may be the case but I doubt it went as well as you think, did you live in the property ? )

Anyway the carers would need to be managed , (shifts , holiday , sickness cover etc ) the running of the house needs to be managed as well .
Will you do this ?

It’s very distressing to take a parent to a care home but it’s not about us , you need to focus on what’s best for them .

I believe if you put the patients needs first then everything falls into place . We can have our emotional moments later , sadness about their decline but be pleased we are acting in their best interest.

Please remember that your father ( like most ) has expressed a wish to stay at home as he feels safe in its familiarity etc .
That won’t be the case when it’s full of carers and your mum is missing . It will most likely confuse and unsettle him and it won’t feel like home .

I am sorry you’re finding this so tough , I have done this and it’s difficult but ultimately the majority of dementia patients end up being admitted to a care home as it’s the best setting .
It’s fitted with all the necessary equipment , bath hoists etc

I would also suggest that, if you are to have input into the decision, you should walk in your mother’s / sisters shoes for a while - perhaps they would benefit from a week’s break while you live in with your dad?

You are very likely to have an easier time than your mum does - your father is likely to be less demanding of and dependent on you than he is for your mum, and you are less inextricably emotionally bound to him - but it would give you a better insight into the burden she carries.

@cantkeepawayforever Thanks.
Do you think it’s an impossible situation where there’s a fit and healthy partner living in the house? Do you think there’s anything that could help? A pp suggested them having different areas of the house which I think could help. And DM would take holidays without him.

DM buying another house is something they could do. So it’s an option. But seems weird.

Actually I am just thinking of my own suggestion where DF is gradually losing memory - no formal dementia diagnosis yet but it’s fairly obvious that most of his executive functioning has gone and he makes life difficult to do simple things like organise their groceries for him. If we manage to get to the stage where he willingly agrees albeit reluctantly to go to a care home, I don’t know what I would do to anyone who put other suggestions in his head. I know a care home is not where he wants to be but my life, DHs life and DMs ( she would go into a care home herself but is worried him) have all been very negatively impacted by his decline and it will only get worse. It’s not like caring for a frail person who is mentally ok, it’s impossible.

In my case there are no siblings but the last 9 months since DM had a fall have been incredibly difficult even with carers. Genuinely OP if I was your Dsis and you came up with this suggestion I would be out and refuse to do anything more.

I suggest you book yourself a flight and go and stay with your father and mother and sister for a week to see for yourself how they are living and coping before you decide to ask for advice on a website. And this is coming from someone who works in Adult Care.

My in-laws had live in care. Mil had dementia. On many levels it worked well but I agree with this pp that fil had no respite. Mil wanted to see him all the time, to know where he was, if he was in another room she would shout for him constantly. So he still never reslly got a break. He wasn't fit enough to go out the house apart from maybe a coffee with a friend. He still was never able to sit in his own house and relax with a book, one of his previous favourite things. Even with the carer mil needed to know where he was. And if he tried to just ignore her and stay out of the way he could hear her getting upset.

So it was still no quality of life for him.

It's a shit situation op. There are no easy answers

And why should your mum have to give up her family home? It's a huge upheaval for her. Your father will be likely disturbed if she's not there. He might not like the carers, he could be frightened of them. What happens when relief ones come in and he can't cope with the change?
Whilst I appreciate you wanting your father at home, you have to think about your mum too and her needs. She must be grieving the husband she's losing day by day. My husband lost his memory and ability to do things over several years mainly due to radiotherapy he'd had for his tumour. It's horrible living with it. I was so much better when he was in the hospice as he was well cared for. I brought him home as I felt it was the right thing to do as they didn't know how long he had to live. It was horrible having carers in. And in hindsight it was wrong as my 16 year old son was at home and trying to study for exams. I was relieved he only survived another 2 weeks.

Also care homes are often much better than they were. We were looking at them for my FIL and I was really impressed with them

To answer a few previous posters:

At the moment it’s DF and DM disagreeing and DSis and I trying to be sympathetic to both - we can see both sides. As a previous poster said ‘It’s a shit situation. There are no easy answers.’

I’m aware that I’m not there and helping, of course I am, but it’s still helpful to have views from others. And I value very much DSis’ opinion as she is there.

Take two weeks and go and live with, and look after your DF. I've been live in for my DF for six years. My sibling lives overseas. They came over to give me respite earlier in the year. The next time I needed respite, it was suggested DF went into a care home as they found it overwhelming.

Unless you've lived it, you have no idea of the physical and mental toll caring takes. It is full on 24/24 every single day with very little sleep, day after day, with no break.

You need to listen to your DM and sister. What your father wants might not actually be what he needs or what is best for him. If money is no object, then he should be able to go and live in a really good home, in which care is tailored to his specific needs.

It's extremely difficult to offset a person with dementia's choices with those that are bearing the load. What happens as the dementia progresses? Your mum has already seen your dad change beyond recognition, what happens to her if she reluctantly accepts the live in care option and his dementia becomes one where he becomes physically violent towards your mum, or has other behaviours too hard to cope with?
My dear friend kept her husband at home for as long as possible, he had 'young onset' so wasn't particularly 'old' - a previously very very intelligent man started peeing in waste baskets and going to the toilet in the sink. Live in care doesn't mean the other partner suddenly has 24/7 respite from these sorts of behaviours, which, particularly in males with dementia can become extremely sexual in nature.
It's not the 'now' so much, it's the 'when'
My mum developed dementia and deteriorated rapidly into an extremely aggressive foul mouthed human living with dementia. She would never have sworn ever, suddenly my dad had a lifelong partner whose favourite words were swear words and she rapidly lost inhibition. He couldn't cope mentally with the change in her (they'd been married 65 years) Then, unknown to the carers, she started attacking him. How was he supposed to 'deal' with that?
No amount of money can stop this , but it can make life ok for the person left behind too

The difficulty with a live-in carer and also a live in healthy spouse is that, while the carer alleviates the physical load of caring, they do not significantly alleviate the mental / emotional load of the presence of the increasingly disabled person AND add their own level of mental load.

In the case it did not work out, this was despite the healthy spouse absolutely accepting the original mental load and that from the carer, through a lifetime’s worth of love for their spouse, and really really wanting it to work.

The only things that could perhaps have alleviated things somewhat were those that took away, as far as possible, any mental
load presented by the carer (all
interactions re rota, pay etc managed by eg. a child; separate kitchen and off duty areas of the house for carers; small and predictable number of cares involved), and also that sleeping area for the disabled person was soundproofly separated from the non-disabled spouse. Having a shared social space and a separate’safe space’ for the non-disabled spouse also critical.

Thank you very much