I have been caring for my 79 year old husband for several years. (I’m 67) He has heart failure, previous coronary artery bypass surgery, type 2 diabetes, and had cancer 4 years ago, so is in his last year of surveillance for this. In addition, he has had anxiety and depression for over 2 years. He has currently been in hospital for over a month, because his heart failure has deteriorated, and he now has kidney damage as well. Long term his prognosis is poor. He’s not previously been confused, but has been on a few occasions in hospital, and I’m beginning to worry that he may now have a cognitive deficit as well. He’s still on oxygen at the moment but they are beginning to talk about discharge in the next few weeks. He’s much weaker than previously, currently needing 2 members of staff to transfer from bed to chair, and has only managed a few steps with physio. He’s completely unrealistic about coming home, we have stairs, but toilet upstairs and downstairs. He has always minimised his health issues, and previously did that after heart surgery, coming home at least 3 days too soon. I have some previous nursing experience, but my husband forgets that I am old as well. There are 2 community hospitals in our area, and the charge nurse has said that they might consider sending him to one of those for re-enablement. Each of them are 10 miles from home.
What I’m worried about is that he will persuade them to send him home sooner than later. He’s always talking about taking his own discharge, which I have said to him is ludicrous, and I can’t cope with him in his current state. We have no family here, our family is 100 miles away, and I have been trying to get him to move for 2 years!
I have no idea about what to expect from a hospital discharge plan these days, and need some advice. I’m worried that like last time, he’ll persuade them that he will be fine at home, and his “my wife’s a nurse” which he’s used previously, will lead him to being discharged early again.
I need some advice about what I can expect from the hospital before they discharge him. In his current state I know that I can’t cope with him at home. What should a discharge plan look like? I’m worried that the hospital will be keen to get the bed back, and will discharge him, without discussing it with me first.
Has anyone talked to you about discharge? On the main Carers UK pages you will find the rules the hospital should follow but sadly, many hospitals ignore them. Find out about the NHS Continuing Healthcare and insist on a proper checklist assessment that should involve you. Make it very clear to the hospital that you CANNOT care for him as he is. From what you describe he now needs 24/7 care in a nursing home. Is that what you would like to happen?
Hi @Maggie33
Welcome to the forum.
The advice @bowlingbun is referring to is here
https://www.carersuk.org/help-and-advice/practical-support/coming-out-of-hospital/
This is something many forum members have experience of and it is increasingly becoming a fight to get the right solution for carer and caree in place.
Make it clear to the hospital that whatever your husband says, you are not in a position to care for him in his current state. Reablement has to be the way forward first, and if they discharge him without you being able to care, it will be an unsafe discharge.
Hi, sorry to hear this. It’s hard but you need to be really firm in that you can’t/wont be able to care for him if he comes home at the moment. I’ve had some experience re this as my husband has had numerous health issues over the years and spent 7 months in hospital end of last year into this year. He then came home but we couldn’t manage and he’s now in a nursing home.
We’re all here if you need to talk, stay strong and push for what is right for both of you. 
@Maggie33
BIG HUG. I hear you. Dad self-discharged 3 times…or maybe it was more
The most important thing is what @Charlesh47 says - say loud and clear to the nurses and doctors, and ask them to write down in his notes - you will not accept caring for him at home.
perhaps connect with the hospital chaplain to discuss your worries and ask them to sit with your husband and try to help him understand the dangers of him self discharging if your husband’s not listening to you.
It sounds like YOU need more support convincing your husband (who I assume has mental capacity) that it would be unsafe for him to be at home and you can’t ‘nurse him’.
SO - can you ask your family to come and stay nearby for a little while to support you? Right now you have very justifiable real worries and if your family can come and help it would be help you. Or do you have any other support nearby?
The question of mental capacity: do you have Lasting Powers of Attorney for your husband - the health one? Does he have mental capacity?
Here is the hospital checklist from the page @Melly1 shared: Coming out of hospital checklist | Carers UK
Note the Care Act 2022 and your rights.
Also - look at the pathways - on page 5 here: https://www.carersuk.org/media/gmrk1hec/carers-experiences-of-hospital-discharge-report-2021.pdf
You can quote pathway 2 and how number 1 and 0 is NOT feasible
I hope this helps. hugs! Keep us updated and we’ll see how we can help
Thank you for all the good advice. I will definitely look at the guidelines for discharge. Yes, he has capacity, and we have Wills & POA for health and finances. My husband doesn’t have any family. My family is 100 miles away, and mostly older than me. Our son works from home, could come for the first 2 weeks, but I wouldn’t expect him to stay longer, as he has a partner & life elsewhere. We have the opportunity to move closer to family, as I inherited my parents home which is adapted for elderly living. But would have to transfer health and support services there, & I’m not sure how easy/complicated that is.
Many thanks for all the support, it makes me feel less alone dealing with everything.
You’re very welcome @Maggie33
Just a little clarification I was meaning that I hope someone - your son - could be with YOU to support you and help your husband understand that he cannot ‘just’ discharge and come home.
It’s a heavy burden and difficult to convince yoru husband that its not good for him to ‘just’ come home and that you could nurse him, AND not good for you
I hope you have some support.
Thinking of you and hope the medics listen to YOUR needs and worries.
Keep us posted. hugs and best wishes
A sad update. Unfortunately my husband’s condition hasn’t got better since admission, and he was moved to Palliative Care last week. I was hoping to get him home tomorrow with a full care package for what’s left of his life. However, events have overtaken us. He was fully conscious yesterday until about 6.30pm telling me how scared he was. His condition suddenly deteriorated and he lost consciousness. They are keeping him under sedation and morphine to help keep him comfortable. But I am devastated. I know at 79 he’s not young, and his quality of life has been poor. But I can’t compute life without him. He’s been part of my life since I was 24. I’m keeping vigil at the hospital as it’s the last thing I can do. I just keep crying. I’m not normally a “cryer” but the strong one. So I’m blindsided by these emotions.
Just wanted a rant, and some pointers from others who have already been through this, and any advice about how to cope.
Hi @Maggie33
So sorry to hear this. Even when we know a farewell is coming, it’s impossible to prepare.
Perhaps you could play some music you both like. Tell him what you want/ need to and then tell him it’s ok to let go.
Is there anyone you can call to support you?
I’m so sorry to hear this, my thoughts are with you. Sending a big hug.
@Maggie33 Hugs from me too.
Maggie, my husband died without warning, in his sleep, 18 years ago, he was 58, I was 54. You would not wish your husband to linger as he is now. What I’m going to say now is going to seem heartless, in time you will understand. You need to think about the final arrangements, especially which funeral director you will be using, Also think about the music you would like (the funeral director can sort this out once you tell him what you want). Then you can instruct the hospital and then they will liaise directly with each other. We put a notice in the paper asking for all enquiries to go to the funeral director, donations to the British Heart Foundation. Don’t start thinking about after the service, for the moment concentrate entirely on what needs to be done to celebrate his life. A notebook or the electronic equivalent is a good idea, it’s so difficult to concentrate on anything. How is your son coping? This is a forum for both current and former carers, we are here whenever you need us.
Thank you all for replying. My husband has been very frightened in the last week. The Palliative Care team have helped him with a mild sedative. He’s been deteriorating all week, but yesterday family visited in the morning, and he was able to enjoy their conversation, and even managed a smile. He’s unconscious, which is probably a blessing for him. My son has been a fantastic support this week. I know which funeral directors, and music. My practical brain finds it less stressful to plan in advance. I’ve cried a lot in the last 24 hours, but feel calmer tonight, as I’m beginning to process the inevitable. Thanks for your comments and support it really helps.
Are you able to have meals at the hospital?
So sorry to hear this Maggie - thinking of you in this hard time.
Quick update. Unfortunately after 8 weeks of telling me my husband would get through this illness, and get home, albeit weaker than before. In the 9th week of his admission, we were told he was now terminally ill. He died 3 weeks ago, with myself and our son by his side. I’m devastated, this has been such a terrible experience. However, thank you to everyone who has offered support, it’s been much appreciated.
@Maggie33…I’m so sorry to hear your sad news, sending a big hug
@Maggie33
I’m very sad at reading your post. Devastating and heartbreaking time.
You will I’m sure eventually be able to look back on happier times. Personally I never thought I could after losing my lovely hubby. But I do now.
You take care of yourself.
Others will be along I’m sure
@Maggie33, so sorry to hear your terribly sad news. Thinking of you and wishing you strength to get through this difficult time.