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 would agree that it also depends on how the patient presents. Sleepy / muddled / absent is more manageable than uninhabited/ violent / abusive- but even the first can involve absconding; inappropriate toileting; total change in character etc and these are SO distressing.

Did the relative you speak about where it worked with carers also have dementia OP?

Our experience with carers in the home with my loved one was that it was ultimately unsustainable, she would become aggressive with them, not recognize who they were and think they were strangers in her house. She would scream out for the window for help and run away because of this. She would not let them do things for her (give meds/cook for her/manage hygiene) because of this. She was physically violent and otherwise abusive towards them and they were really struggling. They also of course need to change over as no one can do round the clock, they tend to have lengthy periods of leave quite often due to the intensity of the job and that is destabilizing for the person concerned and tends to make those behaviors worse.

The fact that my relative said she wanted to stay in her home with carers did not change this, she simply wouldn't remember. I think it's incredibly unusual for people with dementia to stay at home till the end. And actually, although she said she wanted to, she clearly found the whole experience incredibly distressing. While she still says she doesn't want to be in a home (however she doesn't have capacity and is subject to a DoL), the fact is she's a lot more stable and in a much better condition all round, gets lots of visitors, has specialist carers who really know how to manage dementia patients (generally at home carers will not to the same degree). She is visited frequently by family with whom relationships are much better due to the pressure being removed.

I really would consider it strongly, it is only a matter of time sadly anyway so it's better for him to get settled somewhere earlier rather than later.

And I do send my sympathies, it really is a heartbreaking situation, I hope everything turns out as well as possible for everyone involved.

Honestly I also think you're being a bit naive here. We're seen carers work at early stage of dementia where it's mainly just company but when it becomes needing to be cooked for and also washed and personal care. It's different people and very hard to organise. Again if your mom and sister are doing most of the heavy lifting I agree that's it's really not to up to you to 'offer up' suggestions.

@Devuelta81 Yes, relative also has dementia. I’m aware there’s a wide range of how it can present and I’m sorry you had such a difficult experience with your loved one. I’m glad the care home is working out.

@lizzyBennet08 I don’t think I’m being naive, I’ve seen it’s possible to have great dementia care at home. But as previous posters have helpfully explained, it’s different when a healthy partner is living there too.

You say they have plenty of money but have you actually costed this and compared the two?

I also think the success of in home care depends a lot on the quality of the carers. There are also more risks of theft and maltreatment as the carers are not supervised.

Even if it is affordable, does this mean that your mum will be left with very little to live on once your father has passed, because all their money has been used on his care? Is this something he would want? And if he was completely in his right mind, do you think he would say that he wants to stay at home no matter the cost to his wife - on all levels, ie financial cost, mental health cost, quality of life cost? I don't think you should just be taking his wishes into account. There needs to be a balance of what is feasible and what works for both your parents, not just one of them.

Regardless of monetary cost and how it balances up, dementia changes the person, they become something unrecognisable, if you're adding the burden of caring onto any existing relationship, it changes that relationship. Even with full time carers in the house, your mum and sister are still in a caring role rather than being his wife and his daughter. The mental load is massive. Dementia presents in many different ways, but it's not going to get better or go away. If your mum is struggling now, she's not going to suddenly find the ability to cope just because an agency is sending carers is. There really is no point promising anything to someone with dementia, because they can't remember. My dad died at the end of September. My mum doesn't 'remember' he's died until she sees the order of service from the funeral. We don't sit there asking her if she remembers, because she doesn't. Your mum deserves to be able to live her life without concern over who is caring for your dad. We always said we care about our parents, we would never care for them and your mum deserves the right to make her own decisions on that

Coming back to re-emphasise that having carers with a spouse present is ONLY worth attempting if the spouse is absolutely committed to it and willing to work through the problems it will present to them.

In your case, where the spouse is unwilling and prefers a care home option, it’s a non-starter.

Yes, I can see that carers with DM present isn't going to work (unless she has a change of heart, v unlikely). I don't think DF is going to change his mind either. So what happens? DF continues to refuse to go into a care home, until at some point he loses capacity and she puts him into a care home under POA. Is that legal? It's pretty grim. It's such a horrible situation.

You need to acquaint yourself with the deprivation of liberty orders which will be forced on your situation as he deteriorates.

It’s not something most of us have heard of or experienced until it happens and you will have no choice but to have your father placed in a care or hospital setting. It really is better for him to have some choices now in his care home rather than an emergency one being forced. Also this is hugely stressful on his partner, your mother-she absolutely needs to be listened to here. It’s her this affects most - not your father - who will rapidly be losing all memory of you all . I’m so so sorry to be blunt.

Whilst your df has capacity then there is nothing anyone can do, except possibly convince him to accept more care visits etc. We ended up with about 15 safeguarding referrals. Social worker and community mental health team then carried out a capacity assessment on whether mum had the capacity to decide where she wanted to live. No, she didn't, so the wheels went into motion to find a care placement. Obviously as she was by then physically attacking my dad, home care wasn't an option and she moved into a care home which could meet her needs. Yes, it's grim but you have to realise that sometimes there is no alternative. Your df can voice all he wants that he wants to stay at home, but if that thought isn't based on rational decisions with capacity to make them, then the alternative has to happen, otherwise you end up with one or both parents in crisis, which believe me you wouldn't wish on your worst enemy. The reality of dementia care is unless you are saying that you are moving in with your dad to provide 24/7 care, you dont have the right to over rule your mum or sister simply because a person living with a degenerative brain illness has a different slant on it

I'm not ruling over anyone. The situation is that DM wants DF to go into a care home. He has capacity and doesn't want to go. The problem is that they disagree.

Has he had a care needs assessment?

(Your mother / sister would need to be very clear about what care they can and cannot provide)

Is that a legal thing? He has had an assessment by the company who provide the current carers. They are happy that they can keep him safe etc when their carers are looking after him. But it's not full time because DM doesn't want that. So as I understand it, the company can provide as much care as needed but the amount they are providing is limited because DM doesn't want live in.

I also agree with PP’s who said you need to go along with what your mum and sister want. It’s not your home that carers would be going into.

It's not my decision. DF has capacity.

How many care visits do they do at the moment?
Whilst your df has capacity over where he wants to live (capacity isn't a 'blanket' doesn't have it, it's incredibly situation specific) then he won't be going into a care home.

It must be a heart breaking decision for your mum. But that is what she wants. You absolutely must respect that. Your dad doesn’t get much of a say unfortunately.

It's basically full time during the day (unless DM or DSis chose otherwise). But he relies on DM at night.

Your mum won't get to make this sort of decision whilst he is deemed to have capacity, unless a full blown crisis explodes and then there has to be 'best interest' decisions made.

But while DF has capacity it's not her decision?

DSis and I are worried they are heading for full blown crisis. But it doesn't sound like there is anything we can actually do.

I think your mum needs to talk to the professionals (mental health and adult social care) and understand that she can't 'put' your dad in a care home at the current time. All the time he has capacity, then that's where it stops. So, she then has to make a decision between overnight care as well or no overnight care. She can claim 'carer breakdown' to adult services, but he would still be in their home unless deemed to not be able to stay there and meets the (high) threshold for social services to make that best interest decision to move him into care.
Do you know when he last had any kind of capacity assessment ?

Your mum must be exhausted bless her. Is there an option for her to go away with friends or stay with you to get a break and carers to be employed full time for you to test out how it looks with your dad at home with full time care ?