Guilt and discharge from hospital

I am 59 caring for my 78 year old husband who is currently in hospital. His caring needs have increased due to a bout of pneumonia and mentally he is declining as he is convinced he is going to die if I don’t get him out. I have taken him home twice and wach time it has resulted in readmittance as I cannot care for him on my own. There is a referral to SS however can I employ a private agency while I am waiting for the SS carers to come and help? How will a private company assess his needs if he is still in hospital? it is chicken and egg because if I agree again to “Bridge the gap” until SS get him set up I might not be able to cope. He is calling me 6 times a day from the hospital begging me to bring him home. I have explained I need the help. At the moment I am off sick from work, I am very stressed and feel like I am going to have a heart attack myself.

Hi Julie, and welcome.

First off, if the hospital are not talking about discharge, he’s not ready. So getting him out will be setting him up for more time in hospital. All you can do is be firm with him about it and tell him that.

The other thing you can do is either switch off your phone or don’t answer it. Give yourself some space. If you’re worried about other calls, just don’t answer it and tell your husband that he’s prolonging his stay in hospital by fretting about getting out.

Let SS know he’s in hospital and that you can’t cope with his care, so he needs to be assessed before coming home.

If you organise care privately, SS will let you, and their assessment will be that everything’s fine. Far better to let them do it.

And get some rest. If you can manage it, go away for a couple of days. Visit friends - anything. But get some rest. You need it.

Thank you Charles. I have been awake all night dreading the call from him at 8am wanting me to get him out. His view is he wants to pay for his care. I take your point though I need SS to assess him as I need equipment at home as well. I just think we could pay in the short term so I am prolonging his stay in hospital. He is so agitated he is making himself worse. Are the services from SS OK and are they reliable when you finally get them?

As most care companies also do work for Social Services, there’s not really that much of a difference, at least not that I’ve found. Re your husband’s state of mind: most hospitals have a pastoral service. They may be able to offer some emotional support while he’s in hospital to help put his mind at rest.

Julie, you are in an awful situation - in fact, it’s impossible in my view.
YOU have to take charge of this situation before you have a breakdown.

Here is how I see your situation. Feel free to tell me I’m completely wrong, but you’ve already had two recent failed discharges.

Your husband is bullying you, and that simply isn’t fair. He is no longer in charge. You are!

In your other post about building a downstairs bathroom, knocking through walls to make the house wheelchair friendly, etc.
You MUST make it clear to him that if he is ever to come home again, he has to be really patient and consider your needs, as well as his.

In the meantime, he needs to be placed temporarily somewhere else, a nursing home for reablement perhaps. If he is going to be a wheelchair user from now on, has he actually been in a wheelchair all day in hospital? Can he negotiate corners, manage to transfer onto the toilet etc? Pneumonia leaves someone very weak, what he thinks he can do may be completely unrealistic. It’s all very well doing a short “test drive” in hospital, but home alone it will be very different.

The hospital want their bed back. (I had this issue with my mum who was in and out of hospital many times). Sadly, very often they tell half truths. Do NOT believe everything you are told about what your husband can do, see it for your own eyes.

Social Services might arrange 3 carers a day, but that’s only going to be for at most 2, or perhaps 3 hours a day.
The other 21-22 will be down to you!
In those 22 hours, he will be compiling a lost of jobs for you to do when you get home.
Carers are very unlikely to prepare an evening meal for both of you, just his.
They won’t clean the house as it is. Who is going to deal with the house alterations and the plaster dust?
If he moves back in with you until this is all done, you will end up having to give up work, before or after a breakdown.

At 59, it will be 9 years before you can retire on a pension.
Husband is 78. In 9 years time he would be 87.
Is he going to last that long, given his current health?
If you give up work to care for him, how will you manage financially?
How will you manage if he dies first, without his pension.
Would you be well enough to go back to work?

Please don’t think I’m horrible raising these practicalities.
I was widowed suddenly in 2006 when I was just 54, my husband was 58.
Soon afterwards, I was disabled in a car accident.
We ran a business together, so in 3 months I lost my health, my business partner and my best friend.
I was also caring for my disabled mum, who died a few years ago at the age of 87.
Old age is difficult even for someone who used to be fit.
For someone who is old and disabled it is so much harder still.

Protecting your own wellbeing is very important.
Start by putting your answerphone on.
Agree a time when he can ring you.
Tell him that you will NOT discuss discharge until the doctor says he is well enough.
He cannot in any case come home until the adaptations the OT has requested are complete.
In the short term, he is going to have to accept residential care. It will be nicer than hospital, not as nice at home.
A home will have 24 hour staff on duty, not just one exhausted wife.
He will have to work hard to prove in the home that he can manage if he goes home to you.

I’m with Charles and Bowlingbun

Don’t be bullied into his discharge, if it is unsafe, say ‘Unsafe discharge’ and refuse to bring him home.

Don’t be fooled into bridging the gap at home because you could be left without anything being done or all of what BB said.

I’m so sorry about your situation as a whole, but he can’t come home with things as they are, much as he wants to be home, you can’t manage.

I am much younger than my 83 year old husband - I am 60. I totally agree with Charles, BB and Breezy. Please DO NOT let your husband bully you into having him home and please do not sleep walk into being a full time carer - I did and would not wish it on my worst enemy. I do feel that maybe with men of a certain age, they get used to bullying their much younger wives and we get used to whimpering ‘how high’ when they say jump. YOU have every right to ‘quality of life’ too and I agree leave the phone on answerphone and just agree to talk to your husband once a day. I do feel older spouses can be very manipulative.

Like BB, I do not want to sound hard but please put yourself first. My husband had pneumonia and an embolism coming up to 2 years ago and he discharged himself saying his much younger wife WANTED to look after him when I so needed a break.

Try to speak to the same member of staff when dealing with the hospital.

Also try to have some “stock phrases” that you use again and again.
Things like “You know that the Occupational Therapist said that the house needs to be altered before you can come home”.
Tis is very non committal, no dates, nothing firm at all.

Do you honestly think it will ever be possible for him to move back again, given the two failed discharges?
It would be dreadful to spend a lot of money on the house alterations only to find that he can never come home anyhow.

Is he currently receiving Attendance Allowance?
Have you told the AA unit he is in hospital? Be sure to do so asap if you haven’t.

Whilst he is safely in hospital, please go away for a week somewhere to chill out, and get away from hospital visiting and phone calls. I can recommend a lovely hotel in Crete. Inevitably he will object, but he needs to know just how stressful the last few months have been, and how important YOUR health is, as well as his!

As far as charges for residential care are concerned, the value of your house will, I believe, be disregarded as it is your home too. If you have over £46,000 between you in savings, he will be expected to pay for his care UNLESS he qualifies for NHS Continuing Healthcare. If this aspect worries you, be sure to phone the Carers UK helpline for a confidential chat from our specialist advisors.