Removing husband from care home ?

What a heartbreaking situation. No experience of dementia or delirium but do know it’s far from easy to deal with at home. The suggestion to ring the help line and get advice as you need to make sure you could manage and it’s the best thing for your dh. I think I would request an appointment with the manager of the Care Home in the first instance, write down your concerns and their response. I would keep a record of all concerns raised, with times and dates etc. good luck.

Does this gentleman want to be put in a chair and wheeled to the day room?.
He might just want to be left to rest quietly in bed.
It's not as if he is recovering from an illness. If it were me, I would like to be kept sedated and comfortable and allowed to die in peace.
And who arranged the care home and who pays the fees?
Looking after him at home can be done but you will need to have resources available .

..

Me too. Good luck to you both.

Not gone, home!

Win

I too was an unpaid carer along with my younger daughter, for both my parents. The big difference is both of them had mental capacity and though disabled could still manage personal care and didn’t not need help getting around as used aids, walking frames and mobility vehicle and my mother just needed someone to help get in and out of her wheelchair and my car.

My MiL, on the other hand, had vascular dementia and decreasing mobility. We couldn’t have her in our own home due to no downstairs loo, and no room as children still at home and our dogs.

As a result my husband retired at 60, we struggled financially and lost money on his occupational pension as he took it early, he, along with carers in three times a day, was her primary carer. We didn’t full funding for all the carers time, my husband doesn’t drive and after almost five years of caring for her the stress brought on a serious heart attack bang in the middle of lockdown. He did survive, but on both SS and his GPS advice we then had to place her in residential care.

I strongly urge the OP to consider things very very carefully before making the enormous decision to take her husband gone. She doesn’t say how old she is herself, or him, and it’s a huge huge undertaking, even with carers help.

Daddima

OP (and Cossy,) I don’t know how advanced your loved ones’ dementia is, but very often being fixated on ‘going home’ is their way of expressing fear or anxiety, so I’d say that trying to make their present arrangement as good as possible is the best idea, rather than the unsettling of a move, only to find that they continue to ask for ‘home’.

I completely agree x It’s so sad and awful and utterly heartbreaking ❤️‍🩹

flappergirl

Hithere

Op

You know you cannot take him home. It is not realistic with his medical needs

I agree with Hithere. OP, your husband has complex medical needs that realistically cannot be met at home.

A good friend of mine's husband was bedridden and also had dementia. He needed hoists, a special chair and other paraphernalia as well as numerous pills.

She struggled on for as long as she could but found the thrice daily visits by carers (it's quite an upheaval and very intrusive) along with her husband's demands far too stressful, both mentally and physically. I actually thought she might die before him due to exhaustion. She loved him dearly and didn't want to "betray" him by putting him in a home but eventually she had to admit defeat.

Please think very carefully.

I am sorry to beg to differ. Many, many of unpaid carers do this every single day of the year and for many, many years. Everyone has a choice how they manage care. do not tell people what they can or cannot manage. I myself did exactly that twice for 11 years. It depends on how fit you are and of course your own health matters a lot too. Equipment is required as it a second carer if you wish to be the main carer yourself, if not you need 2 carers. Double ups are more difficult to cover these days as we are so short of domiciliary carers. You can employ private carers on direct payment if social is paying and you can do anything you like if you are funding yourself. Equipment is free from NHS, district nurses are free anything which comes under the NHS is free. everything else is means tested I do agree though that is is a good idea to work closely with Complex Care team at all times. If you contact Dementia UK, they have admiral nurses on their Helpdesk who will advise on all these things if you do not have an Admiral Nurse in your district. If you have one close by ask your GP for a referral. Good luck with whatever you decide OP

Unless you can move him to a place where the care is (much) better, I would advise you bring him home - but only after organizing all the necessary care. If you have an extra room preferably downstairs, and can count on a good nursing service in your neighbourhood it might be possible. Are you yourself healthy and fit? Still, you can't do this on your own, you know that. Wishing you courage and strength.

Randa

Hi Notjustaprettyface
I believe if you have an advocate which I believe you can get through a referral to SS and your husband is deemed competent he may be able to come home
But even with carers, it is difficult and tiring.
Things will only progress with his dementia and he will worsen mentally would it not be better to find out why they don't do it unless you ask or see if LPO whoever has it will agree to transfer to a different care home .

If he has dementia and delirium it is quite likely he no longer has mental capacity

MissAdventure

I think that relatives, or the person needing care, sign over their rights when the person is admitted. (I could be wrong, though)

I don't mean to be harsh, but I think working with the home, (and making them do as they should) may be the best way to deal with this.

Your husband could well be as unsettled at home as he is now.

You are absolutely correct. Certainly in cases where that person is deemed to no longer have mental capacity. Because my husband had/has LPOA for finance and health, he retains financial control but not health and welfare. Our home are very good and seek my DH advice and update him very often even though he visits 3-4 times a week.

I am heartily sorry both for you and your husband.

You need to consider very carefully whether taking your husband home is at all possible. From what you say you would need carers, a hoist installed, probably alterations made to your bathroom as well, so I feel sadly certain that it just is not possible.

Whether a different care home would be possible is something I would find out in your place, and indeed whether it would be any better.

Talk to your husband's physiotherapist to start with - his or her work is being hindered if your husband is not helped out of his bed! Talk to your husband's doctor, and of course to whoever is in charge of this home your husband is in.

Keep a diary, showing how often you visit and whether your husband was in bed or in a chair. check with the carers whether he has been out of bed. As he has delirium, I wonder if you can be sure that what he says is accurate?

Get hold of a solicitor at once, and find out whether your husband is still legally capable of making out a Provisional Power of Attorney in your name. It sounds to me as if you do not have one, and if he is not legally capable of dealing with his affairs you either need to be empowered to do so, or have some other legal option in place.

The last fortnight of my husband's life was complicated by the absence of a PPA and as he was mentally fit, but unable to talk, it was not possible for one to be made at that time, as he could no longer write either by hand or on the computer.

I do know what you are going through, and hope I don't sound unfeeling, but deal with theh legal aspects now, using a solicitor and then work out with your husband's physician, physiotherapist and nurses what is best for him. And explain what you are doing to the poor man as often as he asks to go home. You will probably have to repeat it all during every visit.

I hope you have family or good friends to support you.

Even the high scoring care homes don't always meet expectations as to level and frequency of personal care in terms of washing and dressing. But without a deputyship or LPA your options may be limited. What was the original reason he went into care home in the first place? and have the circumstances changed? Have Social services been involved in a care plan?

Arranging sufficient carer visits and relief cover is also very expensive but offering to do significant caring hours yourself may drain your own health so try to look at options with open eyes and listen to independent views from trusted people especially those who have been in same situation..

Germanshepherdsmum

You couldn’t do this without liaising with the care home manager and social services. The upshot may be a deprivation of liberty order, preventing him from being moved as you don’t have power of attorney and he probably lacks capacity to make a rational decision on the matter. Tread carefully.

Absolutely. I know this as have a MiL with dementia currently in a care home.

Earlier in the thread Germanshepherdsmum mentioned a deprivation of liberty order. This happened to my friend and her Mum. She chose a care home for her Mum going on recommendation from people she knew. Initially she was happy then all sorts of incidents happened and my friend was very concerned and tried to get the home to sort them out as her Mum was really unhappy and neglected. It was very expensive too. After several complaints a DOL was placed on her Mum and my friend was very shocked this could happen. I am almost certain she had POA too.

Some care home owners and managers are really devious and will lie to GPs, social services, CQC etc as I found to my cost. So definitely DO take photos of injuries, poor equipment, unsafe fittings and of course copies of all communications.

Formally complain about him being left in bed so much to the manager and work with them to formulate a good care plan. Should you decide to move him there would need to be a best interest meeting if you don't have LPOA your husband should have a mental capacity advocate present to look out for his interests. Get in touch with the adult social services for your area and ask for a review of the Needs assessment, and state your reasons why.
But, think long and hard about bringing him home. It's likely to mean disturbed nights, and over night care for you to provide, as you probably wouldn't be offered it from adult social care, can you really manage his care needs? If carers do come in to help you, it's likely a lot of care will fall to you. Feel free to message me if you want to bounce ideas around.

Care homes vary hugely and change over time. Having taken great care to choose the best place for my Dad at the time, it gradually deteriorated. We had never envisaged moving him but our concerns grew that it was no longer the right place for him. One source of angst was they would not remind him of activities when they were on, saying he had not chosen to participate. He had, we’d written the days & times of the ones he wanted to go to on a whiteboard in his room, but he got muddled with times & missed them. He because isolated and unhappy, saying he wanted to leave so we looked at the alternatives. We took him to see one which was just opening and he immediately said “ I want to live here.” With their help he moved in just two weeks later, an hour before care homes locked down due to Covid. A real leap of faith but he loved his new home, they loved him and it was the best decision ever.
It was his choice to leave and his choice to move in to the new one.

As things stand with you at the moment, there is no legal reason why you could not make the decision to move him back home - just as, presumably, you made or OK'd the decision for him to be there in the first place.

But please do not underestimate what you are taking on. After his discharge from hospital, I spent many months caring for my late OH at home (after many years helping him as he deteriorated), with carers, both daily and live-in, and I could not have coped any longer. I was totally exhausted and emotionally drained by the time he went into a nursing home.

It was not perfect; but neither was the care at home.

Has you husband deemed to have capacity? If so, perhaps you should get an LPA as soon as possible. If not, talk to MIND or the Alzheimers Society to see if they can advise you. I would tread carefully about speaking to the Social Worker or the home until you have the legal situation sorted out. My experience is that Home Managers and Social Workers can be quite manipulative in the way they handle things especially if they think there is criticism involved.
I know you want to look after your husband but you have to be realistic too. There are good care homes out there and it may be better for you to visit as many as you can to get a feel for what feels better. The last care home my mother was in would leave her in bed if she was at all reluctant to get up and her health deteriorated enormously. The new care home give her a good lie in but insist that she goes to the dining room for meals. Once she is there, she is happy to stay there and she is, without exception, the last to go to bed!
As for your husband asking to go home, I can fully understand how soul destroying it is. To be honest, it was one of the hardest things and every time I told her it was not possible to go home, she would be down, angry, vengeful, etc. Now I say to her, "When you are better, " or, "Yes, as soon as we can." The difference in her response is amazing and I was just saying to her partner this morning that it has made such a difference to her peace of mind, therefore mine too.
Meanwhile, I would keep up your campaign to get the home to do what they should be doing and keep your own records of how many times you have to ask for this to be done and their responses. Keep a record of all your concerns. We had a book like a Home/School Diary at the home to put things in writing at the home for the Manager to inspect regularly. One thing for sure is that they won't keep the records of this so you want to ensure there is a record that they have seen. The record we had included the date of the concern, the name of the person with the concern, details of the concern and any response, the date the Manager reviewed the concern and the action they took. I photographed it regularly just in case it went missing. When things broke down irretrievably, I was able to prove that I had spoken to them about my worries so was taken seriously by health professionals although, sadly, the CQH were as useful as a chocolate fire guard.
I can't repeat enough to people who have concerns about a care situation to keep adequate records. With the stress of the loved one filtering your thoughts, it is so easy to get muddled.

OP (and Cossy,) I don’t know how advanced your loved ones’ dementia is, but very often being fixated on ‘going home’ is their way of expressing fear or anxiety, so I’d say that trying to make their present arrangement as good as possible is the best idea, rather than the unsettling of a move, only to find that they continue to ask for ‘home’.

Hi Notjustaprettyface
I believe if you have an advocate which I believe you can get through a referral to SS and your husband is deemed competent he may be able to come home
But even with carers, it is difficult and tiring.
Things will only progress with his dementia and he will worsen mentally would it not be better to find out why they don't do it unless you ask or see if LPO whoever has it will agree to transfer to a different care home .

I would talk to a SW about it. You and probably he I think are far better off keeping things as they are, even if you have to go every day to oversee his care for a few hours. All the other hours would be yours. I think if he were at home, even with carers, you would have none. You must look after yourself to be able to look after him.

Is he under the care of adult services? If so speak with his social worker about your concerns and that you’d like to find a better place for his needs. If not I think you’d be ok to move him, just give them a months notice.

Hithere

Op

You know you cannot take him home. It is not realistic with his medical needs

I agree with Hithere. OP, your husband has complex medical needs that realistically cannot be met at home.

A good friend of mine's husband was bedridden and also had dementia. He needed hoists, a special chair and other paraphernalia as well as numerous pills.

She struggled on for as long as she could but found the thrice daily visits by carers (it's quite an upheaval and very intrusive) along with her husband's demands far too stressful, both mentally and physically. I actually thought she might die before him due to exhaustion. She loved him dearly and didn't want to "betray" him by putting him in a home but eventually she had to admit defeat.

Please think very carefully.

Callistemon21

Hithere

Op

You know you cannot take him home. It is not realistic with his medical needs

But she surely should have some autonomy over what happens to him?
If one care home is not meeting his needs why can a spouse not choose a better one without interference from the authorities?

She is able to do that, of course, if she is paying the full costs of his care and the alternative home chosen meets all the criteria for a person with his needs. Normally the chosen home would send a nurse to the existing care home to confirm the suitability of the person for their establishment, and accept or place on their waiting list if so.

Hithere

Op

You know you cannot take him home. It is not realistic with his medical needs

But she surely should have some autonomy over what happens to him?
If one care home is not meeting his needs why can a spouse not choose a better one without interference from the authorities?