Should I have my husband at home or in a care home ?

Care home obvs sorry for my rushed post!

I would say card home is the safest option for you both.
Good luck with Social services and Age Concern, etc …take all
Help offered.
Maybe assistance varies area to area - we in the South (near Heathrow ) have not been very fortunate - long waiting lists and help advised that we could access then denied💔

I doubt anyone will find a hoist in the kitchen suitable.

The hoist needs to be so placed that it can be used to tranfer your husband from his bed which if carers are involved will have to be a hospital bed to the shower and toilet.

No-one would contemplate either a commode or bed-pans being used in a kitchen!

Ideally, your husband needs a bedroom with adjacent shower, hand-basin and toilet in a room that has a wide enough door for a wheel-chair to be used, if and when one becomes applicable, His bathroom must also be large enough for whoever helps him to shower to do so without getting soaked themselves. The toilet seat will probably need to be raised and hand-holds drilled into place in the walls on either side of the toilet and shower.

Not living in the UK, I do not know if you can get any financial help for all these facilities.

You cannot care for your husband without carers coming in - n o-one can and do not let social services palm you off with suggesting that your adult children or other relatives help.

No-one who is not a trained nurse or carer should risk trying to move a handicapped and possible heavy person - you can hurt both your husband and yourself seriously unless you know exactly what you are doing.

And you really will be even more in Queer street than you are now if you damage your back or rupture yourself trying to move your husband.

I realise this sounds harsh, but the reality is harsh.

I am sincerely sorry you are in this horrible position, but as your house is not suitable for an invalid, you probably will find that carers neither can nor will be sent in.

Please do not feel guilty. You are not forcing your husband into a nursing home and you did not cause his accident. It happened, and as the hospital does not think rehab is an option and have apparently not felt physiotherapy was applicable either, I am very much afraid you have no choice here and that a care home is the only option right now.

What kind of prognosis are his doctors talking about? Is his mobility likely to increase? Will rehab or more physiotherapy become applicable soon, or not?

Have you insisted on a second opinion? It might be well, for your own peace of mind to do so.

If your husband is not able to comprehend the seriousness of his situation, or even the reality of it, then you and your children will have to assume the responsibility for making a very tough decision.

I hope you can find a doctor or other medical professional person who can and will help you decide what is best for your husband, which is obviously your first priority, and what is necessary for you to be able to continue living a reasonable life in harsh circumstances, You really must consider yourself as well as him.

If the cost of a permanent care home is too high, and there is no possiblity of your husband being able to return home, now or later, you may need to consider selling your home and finding a small flat for yourself if by doing so you can better cope with the care home fees. Not something you want to do, I know, but it might be well to consider it, while looking at your options.

Lots of experience shared here. I coped with late DH’s declining health (Parkinson’s) for longer than I should have done, but in the end he spent the last seven weeks of his life in an excellent local nursing home when it was no longer safe at home. For that few weeks I was able to remember that I was a wife and not a carer, spared all the distressing personal care and the huge responsibility of 24 hour care. Although DH would have preferred to stay at home I am sure it was the right thing and have no guilt about my decision. At £1200 a week it wasn’t exactly a cheap option, but still feels right.

I mentioned my Mum who had Alzheimers. She was diagnosed with what was then called pre senile dementia when she was 54. I didn't know this because I didn't live near them but my sister did. I only found out about the diagnosis after my father died when he was 55. This was over 40 years ago and I think that treatment/medication is different now.

Mum's decline went in steps. She managed to live on her own for over a year, with a home help coming in during the week and either my sister or I visiting ever weekend. One day when I was with her she fell over and damaged her hand. She came to live with me whilst she recovered from this. I was living in Brixton at the time and there was no way I could leave her alone at home. Lambeth Council were very good and she went to a day care centre every week day, which she enjoyed and I had good reports about her helping older people whilst she was there.

As I mentioned above, she went into a home where she lived for about 5/6 years. Diets were carefully watched and she had exercise. Because her heart was strong she lived that long. That is why I think a home is the best idea, especially when the sufferer is relatively young. It is often a terrible burden for the carers to look after some one for so long.

It must be a very worrying time for you. Perhaps he could come home and you will then know if you can cope. Care home fees are extremely expensive and you may just find with carers popping in 4 times a day it will help you. Personally if it was my husband I would try but it will also depend on how you are yourself if you have problems then wouldn’t be easy.

I would say making the move from hospital to care home would be the less traumatic of the two, as he will find it easier to cope with especially if he is becoming confused, it will just be like moving to a different ward as far as he is concerned. I say this as my mother certainly coped better thinking that it was just another hospital in the beginning , I knew she had truly settled when she told me she felt safe there and wanted to stay.
Please get advise 're the financial aspects he may come under continuing care but needs to be assessed, and when looking for a home ask about activities , what they provide for the residents , look for one which has plenty going on , my mum's used to have Summer BBQ, regular singers, themed days, where they done food from different countries sometimes to coincide with the football or rugby , family were always welcome to attend. It made her stay so much more enjoyable.

My husband is disabled due to encephalitis and cancer. After an 8 week stay in hospital he was ready for discharge to home with a care package. When I went to collect him I was informed that he had cancelled the care package because I was going to look after him. So, seven months on and 3 further hospital admissions due to adverse reactions to the cancer treatment I have to say I’m exhausted and somewhat frustrated. Everything is difficult and I have no life of my own as I can’t leave him unless. Get someone else to come and spend a bit of time with him. I do the best I can but our relationship has changed - I’m his carer rather than his wife, lover, friend.
Will care at home work for you both? If so prepare for the upheaval and a different life. If it won’t work, take the option of care with support. I’m sorry it’s so hard for you both and I wish you well ❤️

Well said, coping with an invalid is so very hard, my Dad cared for my Mam when she had dementia- I couldn't do much as I lived 90 miles away. I saw him slowly crumble under the strain when I visited. As long as the care home is good, it's preferable. When my finance had terminal cancer I was going to be his carer (we still had our own homes) but was advised by numerous people to let him have the care from social services and I just supply the "extras" which is what I did. It's a hard decision to make, our guilt makes it doubly difficult.

For me, there would be no choice but to allow him to go into a home. But you ( and your children ) should make the choice.

Don't feel guilty, notjustaprettyface. You must do what's best for both of you.
My DH and l were faced with this situation earlier this year, he had 2 strokes in January 2023, plus the start of Vascular dementia.
A CHC assessment was done and my husband qualified for all his fees to be paid. The hospital discharge wanted him to go into home miles away from me,l don't drive. I refused as l knew he wanted to come home and was terrified of being put into a home. Also my DH was only 62.
We live in a 2 bedroom terraced house, no bathroom downstairs but his hospital bed fitted fine into our living room after furniture was moved out.
We had carers 4 times a day plus they also offered a live in carer. My DH was bedridden so didn't need a hoist.
I refused the live carer as they could work at night and we both didn't want that extra intrusion.
We had enormous help from District nurses and our GP.
It isn't easy but it's what we both wanted, he was home for 3 weeks before he died with me by his side.
Again do what is best for your both.Good luck.

The point about a downstairs loo is a good one, but what about washing? My dad was entirely reliant on carers to get him out of bed (hoist) etc but mum and dad were in a flat so everything on one floor. The bathroom had to be modified to accommodate his needs. It’s a very hard choice to make but I honestly think you need to strongly consider a home, for your own sake but also in terms of his safety. I would also ask for a CHC assessment to see if he qualifies to have the fees paid.

I worked in a school as a Learning Support Assistant, but the school had a large disabled unit so we had to do personal care for our students. This sometimes involved hoisting from a wheelchair to a toilet, or to a bed to be changed. We were trained and always worked in pairs but this was for safeguarding reasons. Many tasks could be carried out by one person but we were never alone with a student if clothes were being removed. However hoisting can be done by one person. Having said that, if you are older yourself, it would be physically demanding.

Don't feel guilty about considering your own needs and those of your DD and grandchildren. I'm divorced and live alone so I'll never have to make that decision. I hope my own adult children will never have to take that decision for me either. Trying to persuade my mum to move into sheltered accommodation took years. After being in a lovely place for a short while, she said to us "It's lovely here. I should have moved here years ago!" [Major eye-roll!] If she had, I'm sure she would have lived longer. In her last few years at home she had numerous stays in hospital and her health deteriorated such that on her last discharge she was forbidden to move back upstairs at home and had to have her bed moved downstairs. At that point she realised home was no longer the home it had been. Unless your DH is adamant he wants to come home, you may find the same thing happens. Moving home with changes, adaptations and carers may mean that it is no longer home any more! I'd give a care home a try first and see it he is happy there.

It was the difficulty with mobility that forced us into a decision about putting Mum into a Care Home. We had carers coming in before that and although we had slipped into some sort of a routine, it was blooming hard work. Carers visiting 4 times a day is ok but what they can do is limited, their timings are often not suitable to you unless you employ them directly yourself. However, your husband will be in the place he knows. A word of advice though, if Social Services or the hospital discharge team think you or your family will help out with care, they will rely on that as much as they can and you will get less help. Stand your ground. Do not allow your husband to come home until everything is in place with as much outside carer help as you can get.
Also, how do you feel about wiping his bottom, clearing up after accidents, etc? Some people can, some can't. It isn't about love, it is about people's strengths. I can, my sister can't. She can do other things though that I can't.
If you decide on the Care Home route, please make you sure you visit plenty to be be sure you get the right place. There is one thing that makes you feel worse than putting someone in a care home and that is when that placement breaks down. If you visit plenty, from the corporate type to the independent type, you will get a feel for what you are looking for. The hospital cannot force you put your husband somewhere you are not happy. Once again, Stand Your Ground. They will try to bully you because that is their job. A lot of hospitals have an agency who will help you find a home but I found that the CQC site was the biggest help as they have all the latest reports on how effective the homes are.
Finally, if your husband's care needs are medical, you might qualify for Continuing Health Care. Have a look at the "Care to be Different" website. If you qualify, there will be no fees to pay but it is a bit of a fight to get it. If you do not have a lot of savings, and the only home you have is the one you are living in, then you do not pay the full fees either.
There are many support groups out there so make sure you take good advice from them as to the way to proceed. Don't rely of Social Services to do their best for you or the hospital. They are bound by financial constraints so they work to their budgets.

Before they send him home a package would need to be in place, not just for carers, but to see how suitable your house is and what adaptions would be needed to be carried out prior to discharge. This is usually carried out by an Occupational Therapist. Without this you are not able to properly consider your options. Talk to his care team and insist this be done.

You are in a very difficult position, but do also have to think of yourself and how you would cope. Three of our parents went into care homes; they were very well-looked after, had company and were very settled. I honestly believe Mr R's father would have died if he'd been left at home - as it was he was there for 7 years, the care was so good.
I agree with others - why not let him go into a good care home for respite for 1-2 months and see how it goes? It is much more difficult to re-locate once he comes home, and if it becomes an emergency - we found there was less choice, and everything took so long. Our parents often ended up in hospital over and over again while a permanent place was sought. The planned approach was far better.
There comes a time when, as you say, you can't cope with toileting, falls, feeding, the constant stress of having your house full of equipment and other people coming and going. I wouldn't feel guilty at all about ensuring your husband is well cared for in a good care home. However, as you are aware it can be expensive and you will need to ensure you are getting all the financial support you can. Is NHS funding a possibility? That would pay for most if not all of the fees. Is there a social worker you can talk to?

.My BIL had Parkinsons. A carer came in every day, morning and evening to get him up and get him to bed. A different carer came one morning a week to take him out and this gave my SIL a bit of respite. Luckily it was always the same two carers. However, a friend had to organise care for her FIL, at home and she had to use an agency. The carers varied so the patient often didn't know them.

When my BIL deteriorated he went into a nursing home for 2 weeks in order to give my SIL a break but he ended up staying there. Interestingly the home was Spanish owned and most of the staff were Spanish too. (pre Brexit) It was well run and the staff were kind. My SIL had to contract with the LA that the costs would be deducted from the proceeds of their home, whenever it was sold.

My own mother had Alzheimers. She went to live with my sister's family but that didn't work - two children and a dog. Despite having been assessed at UCH the local authority insisted on a further assessment just to put in a handrail. The only daycare available was one day a month. My mother didn't like being at my sister's and became difficult. The local GP medicated her so much that she had to into hospital to be weaned off the drugs. The same thing happened again and so we made the decision that she should go into a home. Initially she wasn't happy but she soon settled down. The staff all wore uniforms and this made her feel that she was being looked after properly.

I remember discussing my mother with the geriatric consultant in the local hospital after her 2 week assessment at UCH. I asked him what we should do and his response was that we would know when the time came. Not much help. But he said something I've always remembered - that it is often a mistake to try to look after the patient because the carer invariably needs looking after in the future - for their well being rather than any illness.

So, I would say that he should go into a care home and that you should be prepared to contribute towards his care in the future.

Do you know for sure that he would be happier at home? Has he actually said so?
Many people would prefer it if their partner was not having to do all the personal care, some would hate it.
Personally I'd prefer to be in a care home, though I appreciate that not everyone feels this way.

My situation was exactly like the OP's back in 2006. My husband had a massive stroke and was totally paralysed on the left, could do very little with the right side and he was peg fed. We had lived in as part of our work all our lives and my husbands wish was always to return home. I could not go against his wish but I also wanted to be the prime carer. I was however only 62 at the time so quite young and active. He came home with a care package and all the equipment mentioned above. We couldn't have a ceiling hoist as we have an extension upstairs and the ceiling would not hold the hoist. We had an electric one instead, which worked great but is large and heavy to cart around. We had to take our carpets up and put wooden flooring and Lino down instead for easier pushing the hoist around. We had to adapt the bathroom in to a wet room. All this was done before he came home. The OT should visit your home for an assessment to see what needs doing and what is possible. We had a double up care package with carers visiting 4 times a day, but after the first week I changed it to a single care package with me as the prime carer and only 3 times a day. which we found enough. I found it to be a huge intrusion to have carers coming in to our home, but got used to it and got to love the carers. We initially had 30+ different carers attend but got it wheeled down to 6 so each one knew the exact routine and could carry it out supporting me without too much repeating. It worked well for us for 11 years and I wouldn't have had it any other way. My husband died at home. Being a carer takes over your life and is extremely hard work, very challenging dealing with the system, but it is also so very rewarding and you have your beloved husband home. Mine developed Vascular Dementia from the stroke but was easy to care for the most gentle man on this earth and I loved him to bits. Just depends on your relationship and your life as to what you are willing to do without knowing for how long. It is a huge decision and I hope between you, you will make the right one. If you are self funding you have a choice of care home but if not, you have to go with what they offer you up to a point. I wish you well and hope you find what works for you both.

My mom had a severe stroke and never spoke one word. She knew what was happening though. We had a big house but the bathroom did not allow access via a wheelchair. I worked long hours. Her flat was certainly not OK. So it was a care home. Fees extortionate and depleted her savings. We eventually got some funding but I had to give a guarantee that we would step in, even though we had low income. Assessment was a horrible process. A colleague said his dad had carers but the times were never regular. His mom was exhausted. Caring at home is exhausting and visiting is tiring but the care home was needed. Love to you whatever the decision

My late husband had Parkinson's disease, and started to have hallucinations in the early days of lockdown. I was concerned about his wandering, and, after he had a spell in hospital, he was moved to a care home. The decision was pretty much taken out of my hands, which made it much easier. However, I think you have to look after yourself to preserve your own sanity. It's a decision no-one wants to make, involving lots of feelings of guilt, but I feel sure that you have done your best for him. At home he may have another fall, which means he may be safer in a care home. Good luck.

Understand your dilemma
You do first need a home assessment
If that goes with him coming home make it quite clear it is a trial
If you decide on a home in Englandyou do not have to pay fees if a medical reason
Hugh James solicitors in wales will fight your cause after viewing his medical notes and no win no fee
They helped us with my mother in law in care for 8 years got z5 years of fees back
But they will support you from the start
Good luck
Ps Hugh James are brilliant and very supportive

Unless there is a clear reason for the confusion have his sodium levels checked. My husband was admitted to hospital with something that looked like acute confusion and it turned out he had hyponatremia which was caused by him constantly drinking more water than was good for him, having been misled by "health" articles pressing the idea of staying hydrated.

I’m with Elusivebutterfly, my husband had a stroke in his forties and died of Covid at sixty eight. It might not be the level of work -it is the unrelenting nature of your new life. He will be safe in a home, you can still be you while still caring about him instead of resenting what your life has become.

PS I do hope your husband has a LPA for his health. Otherwise the decision may not rest in your hands anyway.