Care home fees - really struggling to understand but want to support

[PurpleSteak]

My friend is an only child of parents who were absolutely complete wrapped up in each other. Her mum who died after a horrible period with dementia a few years ago was kind, but her father has always been nasty, manipulative, controlling (with a diagnosed personality disorder) , both to mum and friend.

Since mum died he's got worse and now appears to be starting with some dementia. He's had a period in hospital after being sectioned.

Friend loves her Dad and believes it's her duty to make sure he gets what he wants, which is to return home, altbough she knows this will be hard on her - neighbours were regularly calling the police for his threatening behaviour before he went into hospital and she would visit to find urine soaked furniture and no food in the house.

Hospital are looking at discharge and care packages. He has money he'll be expected to cover the costs.

She knows she can't care for him, she doesn't want to and he can be violent. However, she is fuming that he'll have to pay for the care. Currently looking at ways to get him home without paying for care.

She will inherit anything left and as an only child this could be substantial, but she and her DH have a good lifestyle and financial security. Obviously a bit more is always good, but it's unlikely everything will be spent and she doesn't "need" the money.

My view is that they should throw money at it to get him the support they need and take some pressure off her, but she will do everything to protect "his" money. She seems to think she's doing it for him, he's worked all his life etc, but he's never going to have any need of the money.

I realise her sense of duty etc is affected by the difficult personality/relationship, but I'm struggling to understand this and really only want to help.

It's not your friends's duty to make sure her father gets what he wants. That might be what she was raised to believe but that doesn't make it true. As you said, her sense of duty is affected by their relationship, if she's been conditioned to put his needs before her own then there's a rough time ahead for her.

You're not going to have the same perspective on this as she does because you've not been raised to serve the "nasty, manipulative, controlling" parent. She's going to need a friend because there's no way she can manage to give her father what he wants and what he needs without being the sole care provider and she's already said that she doesn't want to do that. If her father needs care and she can't do it then he needs to pay someone. It's that simple, like having a cleaner or a gardener.

If her father has capacity then he's allowed to make his own choices, even if they are bad ones. If he doesn't want carers then there will most likely be a rollercoaster of hospital admissions until he's deemed to not have the capacity to act in his own interests. As long as he has capacity, it's his decision to make and it doesn't matter what his daughter or you thinks.

I have seen this many times over (district nurse).

It is likely he has little insight into his situation and his self neglect sounds quite significant. Until the situation has been tried (and failed) probably several times over and evidence of reduced capacity has been established. He will be discharged home, he can cancel the package of care as soon as he gets home ( often trusts are able to fund a week of care to facilitate quicker discharge, which then gets moved to a private company if there is evidence of ongoing need).

Much as those on the outside can see the benefits of care home support it is life changing for the individual, and so usually a last resort.

For those dealing with a similar situation to OP’s friend (or indeed for those whose relatives are getting to this point) you should:

Get a Power of Attorney for both Health and Welfare and Property and Finance whilst they still have capacity. This is essential (and even those of us who are younger should get one prepared, with our wills)

Accept that most old people will say that they want to stay at/return home. As their relative, you’ll probably have to watch them try this. And fail. Falls, incontinence, violence, 999 calls, worried neighbours, are all signs that this isn’t working.

If there’s a hospital discharge, it might be to a temporary placement at a care home. These are often funded for a few weeks (used to be called A Discharge to Assess bed)

A move to a great care home is often good for everyone. Some care homes are exceptional. Also it is possible to get NHS CHC funding for full fees, even if you have money and assets over the £23k limit. It is very hard to get, but violent behaviour and psychiatric treatment would contribute to the possibility of being successful. This is a two stage process and if you Google ‘Decision Support Tool’ it shows you the criteria. There are also companies that can advise you through this onerous process.

Also, all care homes, whatever they say, take residents, who are both privately and publicly funded. So if your relative is entitled to support, don’t be afraid to claim it.

For all of those families going through this, I feel for you. It is such an incredibly hard journey. So sad, stressful and heartbreaking.

If her DF has capacity, then it looks to me that the most likely scenario is that he returns home with no care package, he again declines physically and mentally until he is hospitalised and possibly sectioned again. This cycle may continue until he is deemed no longer to have capacity, then the struggle will be finding a suitable home for a violent man with dementia.