Bringing husband home after a lengthy stay in hospital

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Dorsetcupcake61 Sat 19-Dec-20 09:04:45
A very difficult and heartbreaking decision.
My late much loved father moved in with me when my mother died. He had vascular dementia. For the first year it was fine,carers came in to help him dress etc which I felt was nicer for him. Then he was unwell and spent over two months in hospital. When he came out he had lost his mobility and his dementia had worsened.
This was the end of 2015 and social care was already struggling. As I have always worked in care I had the experience to support with hoisting etc. My lounge was turned into a bedroom with hoists and a commode and a hospital bed. I would be up at 6.30am to make sure everything was ready for the carers. We would wash and dress dad and hoist him into a recliner chair for breakfast. After lunch carers would come back so we could hoist him on to the bed for a change of position/rest. At tea time they would return and we would host him back into the chair for evening. Around 9.pm carers returned and we would get dad ready for bed. I slept on sofa as although we had a sensor mat his dementia meant he forgot he couldnt walk/mobilise. My me time was a 20 minute shower every other day. We were allowed so many free hours when a carer who knew dad would sit with him so I could go out,but it was limited. I was lucky in that his care company were excellent and provided a core group of carers so we worked well together and got into a good routine. It wasnt unexpected as he had been very unwell but Dad died after being at home for 3 months. I dont regret and would do it again in a heartbeat. That said I was in my mid 50s and with a lot of experience of care and the care system and by the end I was on my knees.
That was in 2015/16 under current conditions I dread to think what is available with regards to social/home care.
So much depends on your personal circumstances and how much support your husband needs both now and in the future.
How accessible is your home for your husband? Will you be using the services of a local council or can you afford private carers? Carers have specific time slots ,will you be able to support your husband if he needs help at other times? It will be isolating. Good friends will support you and visit,some feel awkward or uncomfortable.
I'm assuming some things havent changed and before your husband is discharged a care and support package should be in place including an assessment for you as a carer.
Due to current restrictions it must be very difficult for you to have an accurate picture of how your husband is ,and also how you both relate to each other. Does he have the capacity to be part of the decision?
Whatever you decide will be so hard,and there will be guilt. For a while I felt guilty that I had not done enough or my exhaustion showed.
Everyone is different. Dont be hard on yourself if you dont feel you would be able to cope. Family can be supportive but you are the one who is there 24/7. There are some wonderful care homes out there and dedicated carers. Make sure you check the CQC report.
I wish you all the best and hope it works out well. It's a difficult decision at the best of times but the complexities of Covid have made it more so.?

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That's just and

annsixty is spot on - both she and I have been through this with our husbands.

Some thoughts from me:-

1. He should not be discharged without a "package of care" in place and all the necessary equipment. Hospitals are legally obliged to make sure that this is set up before discharge.

2. He should be entitled to 3 weeks of interim care, i.e. free rehab care at home with carers and physios going in. Please ask about this.

3. Caring for someone at home is very hard indeed, and even with carers coming in it is still hard for lots of reasons - each one does things differently and my OH found this very disruptive as did I; the quality of the carers varies enormously; you will find yourself doing things in the night and losing sleep. If you organise carers to come in please make sure they are not just covering basic care, but also time out for you.

4. I tried live-in care, but this did not work out as he needed two to transfer safely.

5. My OH went into a nursing home eventually where he had excellent care and we were all able to visit and spend good time with him, free from dealing with pads, catheters, bum-wiping etc. etc. That was all done so we could just enjoy tome with him - although his mind was very disturbed so it was not really enjoyable.

6. It is fine to put your needs into the decision-making process - you still matter and you cannot care for him if you are tired and feeling very understandably resentful, I am finding it hard to pick up the threads of my life even though he was in a nursing home for the last 5 months of his life.

7. Think about how his care might be funded. Please be assured that the value of your home is ignored completely during these calculations as you are living there. Try the Age UK site for a good summary of what is available in the way of finance - www.ageuk.org.uk/information-advice/care/paying-for-care/

There are two sources of funding: one is via Social Services and the other is via the Health Authority if his needs are primarily health ones. For detailed information and advice about the health authority source try Beacon - www.beaconchc.co.uk

Please feel free to pm me for any advice if you need to. This is all very recent for me and if I can help you with shortcuts to getting what you need then I would be happy to do this.

We told MIL that she was in the Nursing Home just ‘until she was better’ , although she thought that she was in a Hotel most of the time, after a couple of months she thought it was her own house and she was being Lady Bountiful letting all these old people stay with her, this explained why at first she kept wandering into their rooms.
Sadly she passed away during the first Lockdown But it was a white lie and it made her happier than the truth.

Hetty I like that, your mother ‘convalescing ‘ in a care home. Must really have helped with her mental wellbeing.

(read and digest)

www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs58_paying_for_short-term_and_temporary_care_in_a_care_home_fcs.pdf

My mother, disabled by a stroke, was always 'convalescing', never 'resident' in care homes. It helped her mental wellbeing to regard it as temporary.

'Permanent resident' status (with all it's implications for benefits/funding etc.) is optional for the first year - so never tick it on a form. They keep that very quiet!

Are there any rehab places in your area? I survived a stroke at a younger age, was also paralysed down my Left side amongst other problems and although no longer needing medical care I needed a lot of help. I don’t know if your husband has similar or worse brain damage to me, but being younger I had more chance of recovering and benefited from neurophysio therapy. The way he is now isn’t necessarily how he’ll be in a few months time, with the right sort of help. If there is a residential rehab place go for it. Going forward, before considering coming home there should be a full care assessment done including any adjustments that may be needed to your home. Please make sure your own needs are met, brain injury is not easy for anyone to cope with.

I agree with most posters - it sounds as if, in the long run, it will be too hard for you, looking after your DH at home. Can he not go to a nursing home now, with the intention of seeing how it works out? He may in fact feel more secure knowing that medical help is aways at hand.

I agree with Hetty58. In your shoes, Macgran43, I think I would have DH moved to somewhere like a nursing home as an initial step towards his rehabilitation. There the properly trained staff could assess/support him, with a view to him returning home - if that's going to be at all possible. Wishing you a positive outcome for you both - and do look after yourself at this demanding time.

Agree with hetty58

Looks like his medical needs are extensive.

Giving 24 hr care at home is not sustainable. If he were in a care home you would know he would have attention throughout the night.

If you became unwell ,even with just a cold, care for him could not be arranged for him at short notice.

I do not know if it is feasible, but maybe short home visits if things improve.

to give you and him peace of mind maybe view the care home as a stepping stone for now.

Wishing you well with whatever you decide.

You need to decide pretty soon, if we go into lockdown Care homes might close their doors again.

Please make sure the decision is yours, because I think that assumptions will be made that you will do the lions share at home. (Because it's cheaper)

I looked after my mum (who didn't have dementia) and it was to the detriment of everything else.

Macgran43, I understand how difficult this situation is for you, but having been through a similar situation with my late Father earlier this year, I know just how stressful this can be. Please take care of your own health and needs, without rest and relaxation time it is highly lightly that you would quickly become both physically and mentally exhausted, and probably in need of care support for yourself. I followed a similar path with my father, and it was only after he had been in hospital over last Christmas that I realised that I could not cope with the disturbed nights sleep, mountains of extra laundry, dealing with his antics regarding calling the emergency services whilst my back was turned for 5 mins, and sorting out carers who were upset by his comments and rude suggestions to them as they went about their work. In the end, the agency withdrew their services, suggesting that to carry on he would need a 2 carer per visit package, but at over £50 per hour for that, x 4 calls per day, it soon became financially unviable. His Social worker and CPN advised that he would be better off in a good quality rated Care home, so we found a local one that was rated 'Outstanding' by the care quality commission, and they agreed to take him on a trial basis. It turned out to be the best thing for him, and although his behaviour could be difficult at times, the staff were lovely to him, and did everything they could to keep us intouch once the Covid lockdown started. Dad finally passed away in May this year from long term heart problems, but we now have another family member in the same carehome, and she is allowed a bubble of two visitors to visit her every week, they get Covid checked at the reception area, with temp taken ect, then the visit takes place in the residents own bedroom, it works quite well.

A care home would give quantity and quality of care. As you are in your late seventies you will not be able to give the quantity or quality of care needed. If you are run ragged giving care the quality of time together is likely to be poor.
If your husband is in care you won’t have quantity of time but the quality will be so much better.
Heartbreaking decision for you but I think head must rule heart.
Hope you are able to reach a decision to suit you and live peacefully with it.

My advice was the result of my own experience
My H had Alzheimer’s from his early 70’s, he was fine with me at home, we coped well.

It was when his needs became physical as well as mental that the problems started.
We were both then over 80.
He had a bad fall, was taken to hospital for 15 days no physio, and in a dementia ward.

When he came home he was barely able to walk, I had 6 weeks with a care package which was free, he then had a major stroke, back in hospital but as he was thrombolised to break up the clot he made a sort of recovery.
Back home I got carers in which I paid for and I got two periods of respite in a care home for him which gave me a chance to get some rest.

The stroke was in April, by October I was on my knees, he had become incontinent, I was up in the night and my own health started to suffer badly, I was exhausted and physically going down hill.

I got SS involved and we managed to get him a place in the care home in which he had had his respite care.
By then his Alzheimer’s meant he didn’t realise he was there for good.
After just 6 weeks he was diagnosed with cancer and he died in April of last year after 4 weeks in hospital.

My own health was badly affected and now at 83 I would be in residential care myself if my wonderful GD hadn’t moved in with me.

Just take time to think very very carefully of the implication of both the choices you have.

Be very wary of being put under pressure to bring him home. If he does come home and you are struggling to cope then it could be very difficult to reverse the decision. He will have been discharged by SW and you could be very much on your own to start a process again. Good luck with whatever you decide. I implore you to read and reread annsixty's post.

I nursed my DH at home when I was in my 50s. It was extremely difficult, I was so exhausted I lost weight. I think it would be better for someone so ill to be in a nursing home where there are trained, fit staff and for the wife to visit and just enjoy the time together.

Macgran43 please listen to all the advice on here and talk things over with your family before making any decisions.
My darling mum looked after my dad after he came home from a long stay in hospital. It almost brought her to her knees, she became ill herself with the stress and strain and eventually had a TIA.
Dad had to go into a home as an emergency as my brothers and I all worked and could not help as much as we would have liked.
Dad had the care he needed and Mum would visit every day. Yes she felt very guilty but it was the best thing for them both.
I must also point out that Mum was only in her early 60's.
Please think long and hard about what is best for both of you in the long term. I'm normal times this would be a difficult decision, in Covid times almost impossible.
I wish you well and send my warmest regards xx

If specialist stroke rehabilitation is needed, it should be available for six weeks.

He's entitled to a full assessment and should have a detailed care plan before he leaves hospital.

His social worker should advise on suitable aftercare for him.

Don't be rushed into decisions and make sure that everything is in place before he leaves hospital.

Personally, I think that having him return home will be too much for you.

annsixty your post was very helpful and I hope will enable the OP to come to a decision.
The Care home could be viewed as part of your DHs convalescence maybe? See if he improves enough to come home at a later date?
It would be very sad if you became unwell due to looking after your husband, don’t underestimate how much lack of sleep and the anxiety will affect you.

Dh not DJ... fat fingers