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

When my DH was ill no-one suggested that he needed to be downstairs. He had a hospital bed set up in the spare bedroom, so I don't know why so many people are saying the patient needs to be downstairs.

I was only in my 50s but was utterly exhausted dealing with his care. The carer provided was useless. I did get some help from family but can't imagine dealing with this now I am older. I think a care home is the best option.

Lots of good advice already. I would add, try him at home first then at least you know if you can cope and if not then you tried.

Perhaps pay for private physio? Can you apply for attendance allowance on his behalf? For extra help caring for him over and above that provided by your local authority?

So sorry this has happened to you and him.

When I think back to my mums situation with dementia and mobility problems. After a few months in hospital then rehab it was decided to see how she was at home with carers and family helping daily. The care that she was getting was not through out the night. She was ending up back in hospital I was getting phone calls early hours of the morning every day.
It was not the family who made the final decision for her to go into a care home. Your house will be assessed then the decision will be made you will be consulted what’s the best way forward.
It’s not really your husbands choice what the outcome will be. The practicalities of his care and well-being are considered more than his preference. Whatever the outcome try not to worry what you need to do is look after yourself and take care.

Even if you get 4 visits a day of 30 or 45 minutes that’s only a fraction of a 24 hour period, and for one person to manage the rest is hard.
Suggest you speak to the social worker or care manager involved and tell them how you feel. Contact Age Uk for advice and discuss how you feel with your family. Will they give any help?
Best wishes and good luck

I do wonder if the hospital will let him come home straight away. I have a friend in a similar position. The home was assessed and could not be equipped quickly enough so he is going into a care home for a few weeks. They will pay for that.
I think the LA have a home but it was too difficult for my friend to get to. What will happen after that I don't yet know.

In 2018, when my mother was ready to come out of hospital she went into a Local Authority home for assessment and rehabilitation for six weeks. We were lucky it was essy for us to get to. Mum was 98 but there were people if all ages there. That 6 weeks was free. Could you ask if there is something similar you husband could go to?

You said "as my husband would obviously be happier at home" I respond saying "not necessarily"
When my DH, who already had a disability and had broken his elbow and later his hip, developed Dementia, I struggled to care for him at home. For a part of that time we had carers coming in twice daily and lovely as they were it was a hindrance rather than a help. Their visits were short, (did not enable me to pop out to the shop or post office etc. and unreliable timewise, depending on whether their previous clients were easy or hard to deal with. Also it was hardly ever the same 2 carers who came.They were not available in the night when DH was usually at his most needful. We had a crisis when he got stuck in the bath and I could not get him out. I had to wait for a SIL to finish work and come to haul him out. Eventually, I was forced through lack of sleep and severe anxiety on my part, to look for a care home for him and found a wonderful one nearby.

This move saved my sanity. I was able to visit him (until Covid struck) whenever I liked, entertainments in the home/and was invited to come and join in whenever there were entertainments or parties in the home. I visited 3 or4 times a week so was able to visit the hairdresser, lawyer etc, help out with the DGC's school pickups and events again. I was even able to have a couple of short breaks away. My 2 DDs and many friends were also enabled to visit him as they were no longer afraid that they would have to cope with a toilet incident or worse.
Dh believed that I also stayed in the home, but in a separate wing for ladies because I was always popping up or meeting him in the garden. He was definitely happier there than he was at home when I was totally exhausted and was really struggling to care for him, cook, clean and cope with 2 changes of clothes and bedding most days

Obviously my advice is to look at the care home option to ensure his comfort and your own health and sanity.

You do get 6 weeks free from the NHS both carers and all the equipment you need it’s a wonderful service I have two friends recently had this after bad falls and prolonged hospital stays
The NHS really is quite wonderful
It’s a terrible decision to make and I would take that six weeks to work out what you can and can’t manage for you and for him
Good luck to you both

So, no carers at night (you are 100% on your own), cannot operate a hoist, have your own life you do now want to give up (not selfish at all)

Answers to some of the questions to other poster
Am I being selfish in not wanting to concert part of my downstairs in a disabled bedroom ?
No, you are not

I still don’t get how carers could see to all the toilet needs though ? They don't, you are right

How about if my husband needs to open his bowels in between carers ‘ visits ?
You would have to take care of it

It is 1000000000% if you are not capable of this!
You are not a medical professional trained, paid and have time off from care to avoid burn out

I agree with a previous poster, why not recover in a care home and see how it goes?

I'm a bit alarmed by all the talk of 'essential' stairlifts, downstairs bathrooms - and hoists. My friend came home from hospital and didn't have any of these things. Her little house had only a small sitting room and kitchen downstairs - as I'm sure many small houses do.

Out went the two sofas and sideboard, then in came a hospital bed, wheelchair and commode. The TV was relocated to the top of the fireplace (where she could see it) - and we sat on a couple of dining chairs.

She had carers four times a day, often in pairs, but one, the best by far, preferred to work alone. She was like a breath of fresh air, only tiny, but cheerfully managed to get my friend up, washed (bedbathed) and dressed, hair washed and styled, fed and watered, into her wheelchair, through the kitchen to sit in the garden.

She was a very good cook as well (the others being pretty useless. There is no 'rule' that it takes two to do transfers. The commode was emptied/cleaned in the upstairs bathroom.

My friend then had sleepover carers - having fallen out of bed at night a few times - and was happier, having never before lived on her own. Apart from hospital visits and stays, she lived like this for eight months, without too many problems.

you could try contacting your local Age UK, also Carers' Centre; they might have more knowledge of what is available locally, and can discuss the issues.
all the best OP.

Hello Janejudge
Thank you for your post
Nobody has mentioned this 6 week free care but communication in the nhs is bad
Does this 6 week free period also apply to a nhs rehab centre ?

You wouldn't work the hoist as most need 2 people. I would think that it would be good to get your adult children involved. Your home would need to be assessed and if it wasn't suitable the decision is made for you. I would think that social services should be able to advise you further. This is such a difficult time, I hope everything works out for the best.

people who are immobile wear incontinence products and are usually washed and changed in the bed by careworkers.
i help a person who never has a bath or shower, she is washed in the bed.
this is the daily reality for many disabled people.
OP, there should be a discharge planning meeting with you before he leaves hospital.
there is usually a discharge sister who co-ordinates this.
it is hard for you to envisage the what the home situation might be like with no experience.
you would not operate a hoist; it takes 2 trained people.

The likelihood is that he will wear pads

Hello Hithere
I wouldn’t have anybody to help during the night .
I have my own health problems which include osteoarthritis of the wrist and knee
I also have other problems like mild prolapse and my heart doesn’t feel right at the moment
I don’t know how to use a hoist and it would worry me
I think you are trying to say that for these reasons he would be better in a care home where he would be looked after by professionals ? Am I right ?

Hello Dilemna
Thank you for your very long post and your encouraging words .
How did you manage to have a couple of holidays ? Did you feel guilty at all ?
I also help my daughter with the grand children and I don’t want to give that up as it brings me much joy .
Am I being selfish in not wanting to concert part of my downstairs in a disabled bedroom ?
I still don’t get how carers could see to all the toilet needs though ? How about if my husband needs to open his bowels in between carers ‘ visits ?
Sorry to be so descriptive but these are worries that I have

firstly you are entitled to 6 weeks free care, either at home or in a care/nursing home

Has he had an OT assessment and has one been carried out in your home?

The reality is, he will be sleeping on a hospital bed in the kitchen. He will be hoisted out of bed and transferred to a chair in the day and then transferred to a commode twice a day, during the day and then hoisted back to bed at night. Only you know if you can cope with that. We had a family member do the same and although it was their choice, it was not a choice I found appropriate myself (but it is none of my business!) I think they found it quite an isolated existence but the decisions had been made and social services really do disappear once you are home so it ends up being what it is iykwim

I would ask the social worker and OT what is available locally to you, who has space etc

I hope he feels better soon

It is important your husband is happy

It is also important you are happy too and can cope with his decline.
How about your health too?

Think long term - 4 carers will cover 24 hours? What do you have to do?
Do you have anybody to help you during the night?
What if/when he gets worse?
What if you get sick?
Where would be be better taken care of?

What if you need to use the hoist and are alone?

Take a real and objective inventory of his medical needs, what he truly needs, what what he wants.

I would hate to have to make that decision. I'm inclined to advise that he stays at home as long as he can. In my experience people go downhill quickly when they are in care homes unless dementia is far advanced.

A friend was far less tired once her DH went into a carehome and she was able to sleep properly without the responsibility and worry about him once his Alzheimer's was advanced. She visited him almost every day until he died less than 2 years later.

How about trying it the other way round?
I know it could be expensive but there are care homes who offer respite facilities so could you try 4-6 weeks (or less) to see whether it would suit him?
Carers coming in every day is not hard to get used to and it is his house too , but it might mean rearranging things to give him a downstairs bedroom (a stair lift would be an essential for a start)
You could talk it through with and have an assessment from an OT to help inform your decision.

My husband is totally immobile and has Lewy Body Dementia. He is only 68. My situation is not exactly like the OP in that his immobility occurred gradually and with no hospital stay. I looked after him at home, as his sole carer, for 2.5 years, then for 6 months with carers 3 times a day, then a bout of sciatica laid me low so my husband went into respite care for a fortnight which was then made permanent.
Having carers in was surreal - took some getting used to but they did all the personal care, getting him up, putting him to bed and all toiletting (he wore Tena slips). That left me with meals & feeding, laundry (lots!) & all other household chores. It was definitely easier with carers than doing it all myself. We had a hospital bed installed downstairs and various moving aids, but not a hoist at that stage.
He has now been in his care home for 9 months and the first thing for me to say is that he is safer there - no risk of falling and medical staff on hand 24/7 as it is a nursing home. He is now settled there, recognises various members of staff and is well looked after. It is not ideal and not what he wanted when we discussed getting old many years ago. I visit 3-4 times each week, sometimes taking our grandchildren after school and recently taking him out after getting a WAV. I am now able to help my daughter with the school run, enabling her to further her career by going back to work full time.
I have much more free time than when I was a sole carer and am picking up various threads of my life - our grandchildren and my old hobbies which fit well around visits to the care home. I have also been able to take a couple of holidays. I have something like a normal life again.
My advice to the OP would be to assess your home - you will need your husband's bed to be downstairs and to have a bath or shower downstairs too. Washing a disabled person with a bucket of water is awkward and inefficient, even with carers. Social Services will supply equipment quickly, but any large adaptations will take weeks or months, even if they are free.
If you haven't got a suitable set up, go for a care home, either permanently or while you get the necessary work done.
Who pays is a good question - our county council tried to overcharge us after a financial assessment of my husband's income (I refused to divulge any of my finances) but Age UK were very helpful - get in touch with them ASAP.
Finally - do not feel guilty whatever you decide to do; your husband needs more care than you can provide and you have a right to a life beyond being a carer 24/7.

I think the idea of a trial run at home is a good one provided that is understood by Social Care etc. It's sad when these decisions have to be made and I really feel for you.
I think the care home option may in the end be best for both of you, you will be able to spend time with your husband there without being stressed and anxious all the time. I wish you both well.

It is such a huge undertaking Notjust but could you see yourself trying to have your husband home so that you know you did your very best, even if he then moves into a Care Home?
Call on all the help on offer.
Life has taken a cruel blow to you both and I don’t have any advice based on experience but wanted to send you 💐 .
Good Luck with whatever decision you come to. A sad situation for your Husband and you.

Thanks for your replies
My husband is confused at the moment and doesn’t make sense : we can’t have a conversation so I can’t ask him what he wants to do
I have got 2 adult children and we do talk about it yes ; they are also worried that I wouldn’t cope and the amount of equipment that you mention Elaine is off putting
We have a downstairs toilet but the doorway to it is quite narrow so I don’t think that would work
I really don’t know what to do

Equipment would probably include a hoist for the bed, commode, wheelchair or mobilator, maybe hospital type bed. Do you have stairs or downstairs toilet? If stairs - how would you/carers get him up or down stairs? These are things you should think about. Do you have family nearby to help?
Re fees - depends on which country, Scotland and I think Wales have different financial arrangements than England. There are for and against both. You could maybe get an appointment with social services to talk through but take a family member or good friend as there is so much information to take in. So sorry to hear this. It's a big decision. Is your husband able to have a say in it?