Relative refusing professional care...?

bestpud

I don't know if this is the right board but it seems appropriate.

Is there any options for people who need help with caring for a relative but the person refuses?

This is an elderly man who is in the final stages of cancer and now needs two carers on hand all the time. The family are supporting him round the clock and one has stopped working to provide daytime care.

However, the others are unable to stop working and it is impossible to have 2 people there 24 hours a day. He needs practically carrying to the toilet etc and one person cannot manage and the house is not suitable for many of the aids that might help. This is on top of the emotional toll on those trying to work full time and not getting any sleep etc.

He refuses to have Macmillan care or any other carers in as his savings mean he will have to pay for it.

Is there anything the family can do to force (sounds awful but it would have to come to that as he wants to stay at home and they just can't manage any more) him to allow a professional carer on to help out?

It would be alongside the family care, not instead of.

Mojisola

Is he under the care of a hospice? He wouldn't have to pay for that.

I didn't know that you had to pay for MacMillan nurses. There was no mention of payment when my relative was receiving care from them.

What is he planning to do with his savings? Take them with him?

Added: is he claiming the benefits he's entitled to? Even if the money from those paid for a carer for a few hours, it would give you a break.

Also: contact Crossroads Care and see if they can offer a carer. Ours offer three hours a week so that carers can take a break.

JoW123

bestpud wrote: »

I don't know if this is the right board but it seems appropriate.

Is there any options for people who need help with caring for a relative but the person refuses?

This is an elderly man who is in the final stages of cancer and now needs two carers on hand all the time. The family are supporting him round the clock and one has stopped working to provide daytime care.

However, the others are unable to stop working and it is impossible to have 2 people there 24 hours a day. He needs practically carrying to the toilet etc and one person cannot manage and the house is not suitable for many of the aids that might help. This is on top of the emotional toll on those trying to work full time and not getting any sleep etc.

He refuses to have Macmillan care or any other carers in as his savings mean he will have to pay for it.

Is there anything the family can do to force (sounds awful but it would have to come to that as he wants to stay at home and they just can't manage any more) him to allow a professional carer on to help out?

It would be alongside the family care, not instead of.

Does he have a Macmillan Nurse assigned to him at all? This would be free and there should be one aligned to his GP surgery. Contact the surgery asap and let his GP know how much the family is struggling. Also is there input from a District nurse? They can refer to Marie Curie who can provide night sitters to sit through the night and assist the family to provide care. Again this is free. A Macmillan Nurse cannot force him to accept care but they have ways of phrasing things to maybe get him to accept more help and would also support the family. I work in a palliative care unit and this is not an uncommon problem! The elderly especially are reluctant to accept care.

londonsurrey

There are two sets of choices.

The first is by the carers. If they are willing to fund it, they have the option of purchasing help for their homes and needs, freeing them up for the ill relative.

One other option for them is do what they can, and then to leave him to it.

And yet another is for take legal advice, and possibly force it down a legal route, where he is declared incompetent. TBH, I would rather be left to die as I chose than have people force what they think is right down my throat.

Once the carers have decided what they are willing to do, that leaves no further negotiation with the old chap, and he can make his own decisions based on the facts.

LEJC

This is such a sad situation...and I guess his pride is preventing him from agreeing to the care.

We went through a similar situation a few months back with my mothers husband who refused care and medication....not because of an illness but more old age related,social services and the hospital became involved and it was deemed he lacked capacity which meant that he could be taken to hospital for medical treatment. It really was a struggle and not at all dignified for him but the decisions we made as a family to stop our care of him, I believe were the right decisions to make.

You have to be honest with him and admit its not possible to give him the care he needs and hopefully he will understand your limitations and the impossible situation he is putting you in.

Have you tried introducing the other carers just as visitors at first who just happen to be able to assist when needed...is he willing to talk to them do that perhaps they can gain a confidence from him....

Is it something as basic as he needs a male carer...that certainly helped a little in our case as our relation was of the mindset that a woman had "no place helping him with the basics of toileting!!"

I hope for all your sakes you get a resolution that allows your relation to bear his illness with both the dignity he feels he deserves and the appropriate care you need to provide him outside of the family unit.

bestpud

He won't have anything to do with the hospice - point blank refuses to even talk about it.

A Macmillan nurse went there against his wishes, as the GP saw the family need help and she was there for them rather than him. He wasn't happy at all as he wants nothing to do with them and won't have them back.

They have been told he will have to fund any care he has because his savings are over £20k. Is that not correct?

Nobody wants to force him into anything and they are all committed to keeping him at home as that's what he want's but he can't accept that they can't cope.

There isn't any problems with running theoir own homes as such, it's just that nobody can afford to give up work. One relative has and is claming CA but was in a position financially to manage on that - the others need to be working to pay the bills.

He has enough money, he just won't part with it. I'm sure he would feel better if he had more support and there would be less stress in general. It doesn't help that he is treating one of the main carers terribly and they are really buckling under the strain of workng full time, caring all night and being treated awfully at the same time.

ETA: the GP and district nurse visit him fairly regularly to treat pressure sores and review his meds etc.

LEJC

With regard to your question over the threshold of savings .....in our area there is a tiered system,if you have over £23k then you need to fully fund your own care,below £23k until I think its £14k you pay a percentage thats calculated on your income and below the lower amount you are fully funded.
HTH

Is it a case that hes possibly in denial of his illness and thats why he refuses to discuss care?
Is there perhaps a friend of his wwho could talk to him or someone he trusts rather than the hospital/GP/Carer professionals.

I really do feel for you as I said earlier its very similar to what we went through and sadly it had to get to the stage of our relative being on the verge of sectioning and showing terrible signs of self neglect before he was able to get the proper care he needed.

bestpud

LEJC wrote: »

With regard to your question over the threshold of savings .....in our area there is a tiered system,if you have over £23k then you need to fully fund your own care,below £23k until I think its £14k you pay a percentage thats calculated on your income and below the lower amount you are fully funded.
HTH

That's much the same then - he would fall into the fully paying bracket, rightly so, but he just won't pay.

margaretclare

I think I agree with those who asked - what does he intend to do with his savings, take them with him?

There used to be a saying 'saving for a rainy day'. What do you do when the rainy day has arrived?

This is a terribly sad situation and extremely difficult for those who are attempting to do their best for this guy.

Some people are funny about Macmillan. When my cousin-in-law was being treated for acute myeloid leukaemia last year, I ventured to mention Macmillan to his wife. I nearly had my head bitten off.

bestpud

LEJC wrote: »

With regard to your question over the threshold of savings .....in our area there is a tiered system,if you have over £23k then you need to fully fund your own care,below £23k until I think its £14k you pay a percentage thats calculated on your income and below the lower amount you are fully funded.
HTH

Is it a case that hes possibly in denial of his illness and thats why he refuses to discuss care?
Is there perhaps a friend of his wwho could talk to him or someone he trusts rather than the hospital/GP/Carer professionals.

I really do feel for you as I said earlier its very similar to what we went through and sadly it had to get to the stage of our relative being on the verge of sectioning and showing terrible signs of self neglect before he was able to get the proper care he needed.

He's not in denial, I'm pretty sure, as he talks about dying and how long he has left etc.

When intially told it was terminal, the hospice problem was just that he's had friends with cancer go in for a couple of days to get a symptom under control and they didn't come back out. So he was wary of going in case the same happened to him.

But, several months on, he now knows he is at the end so I don't know why he is still fearful of it. I think he just wants to stay at home, which is fine, but they need help for him to be able to do that.

It is desperately sad, for all involved. There is so many emotions flying around and it's really difficult to know what to do for the best.

bestpud

The money will go into a trust and is all very complicated, so it's not as if the family can pay for the care, with a loan if need be, in the knowledge it will be paid off.

That would be one way round it - he'd still pay but wouldn't need to hand it over himself. It's not an option though.