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

My husband will have to go into a care home if his medical problems get much worse, even though he has no wish to do so. The only time I have had a break since 2013 is on the rare occasions he has been hospitalised.

We had a discussion a couple of years before he had these health problems, which began in 2006, about what would happen if either became disabled. My husband said that there was no way he would be able to look after me if I became disabled, and I would have to go into a care home. Therefore I reckon I have done my bit.

My aunt was in one of these. Her family wanted her to go into a home because they were worried about my uncle caring for her as she is has kidney failure and the dialysis was making her act very strangely. He wanted her home and my aunt wanted to go home so they did home visits, set up care, etc.
This link may help you understand what happens at the unit. www.nhs.uk/nhsengland/keogh-review/documents/quick-guides/quick-guide-discharge-to-access.pdf
You could also Google where the unit is for your hospital so you'll know how far you need to travel. As far as I am aware, you should be involved in the procedure.

It will be somewhere where they can assess his needs before he is transferred to a nursing or care home. It seems they may have realised or accepted his condition has changed since he was at home/prior to admission. I know it is overwhelming and frustrating but it is a good thing he is being assessed. It simply isn;t true there is no 6 weeks free care anymore, you only have to google to find the information. I hope you are okay

Not sure but perhaps it’s another area of the hospital where he already is. It’s good news that he will have a longer discharge assessment which will help decide what care he needs.

Hello everyone
An update for you : they have now decided that my husband will be sent to a D2A bed but we don’t know when exactly and we won’t have a choice of where he goes
It’s free
Does anybody have experience of these discharge to assess beds ?

"Caring" for someone doesn't mean you have to do everything yourself 24/7.
It means putting a system in place so that the person's needs are met.
It means looking after your health and wellbeing so that you can continue to have a positive, though different, relationship with the person.

As an example my Dad moved 160 miles to an extra-care apartment in my town after my Mum died and he wasn't coping well on his own.
Fast forward five years, he is now 92 and has developed vascular dementia.
The in-house care team have stepped in and gradually increased the support they provide. Sometimes Dad or I have suggested something, sometimes they have identified a need.
I can't tell you what a help that all is to me.

The saying goes that it takes a village to raise a child, well I think the same could be said about looking after the elderly and infirm.

I have been reading this thread but haven’t commented. I had assumed that you were of a similar age to your husband and that it would be physically impossible for you to care for him due to your age. I now see that you’re 65.

I’m seven years older than you, 72. Even keeping active, you do begin to feel the effects of age quite quickly as the years pass. How you feel at 65 is probably not how you will feel in a few years, and definitely not if you’re engaged in the unremitting hard work of being a carer for someone who is immobile, doubly incontinent and lacking mental capacity.

I’m going to sound like a truly horrible person but I could not - would not be willing to - look after someone, even my husband, with these problems and I wouldn’t be willing to have a hospital bed, hoist, commode, stacks of incontinence pads and goodness knows what else in my living room or kitchen and carers coming in and out. My life would no longer be my own. I’m being absolutely honest about that and expect to get stick and reminders of my marriages vows. I would not be willing to surrender what years I have left in this way. Your life is precious and we never know what tomorrow holds. A care home is the very best place for your husband, where he will have professional care 24/7. And you don’t have to visit him every day. Please remember that you are entitled to your own life. You have looked after your husband thus far, and finding a good care home for him is an extension of that.

I hope you will consider yourself and your needs in all this. I wish you well.

Notjustaprettyface

Hello dear gransnet friends
Thanks again for all your supportive messages
In my initial post, I didn’t mention that my husband and I have a considerable age gap so I am only 65
Does that change your opinions at all ?

No!

No it wouldn’t change mine,

Hello dear gransnet friends
Thanks again for all your supportive messages
In my initial post, I didn’t mention that my husband and I have a considerable age gap so I am only 65
Does that change your opinions at all ?

Be brave , accept the inevitable. With respect you are too old to care for your husband in your own home . Find a suitable care home ( and don't be afraid to move him if the care does not meet your standards). If he is in care you will have the strength to maintain a loving relationship with your husband. You will not be abandoning him ! You will still be caring for him . Please look after yourself.

Op

Do not take him home!

You cannot phisically change him as needed as he is fully incontinent

I cared for id my mum in our house for three years , she developed dementia - my youngest child was 11. I was exhausted!! We found a care home. Hard decision but the correct one. Please please look after yourself, even with the maximum support it would be a mammoth task to care for him at home . Remember if your husband does go to a nursing home you are still his carer and will have the emotional energy to oversee his care. You will also feel to have some control over the situation , you can visit whenever you want to and can leave whenever you want to - that is liberating. It is a very difficult situation and there is no easy answer, only you know what you are capable of , be honest with yourself. I send you strength. 💐💐

From how you describe him the only place he will be safe and properly looked after at his age is in a care home, you will probably make yourself ill if you try to look after him. He surely would not want that for you and at the very least he should be willing to go into a care home when he first comes out of hospital, you need to make sure the hospital staff cannot discharge him home and you must tell them that you cannot look after him at home, speak to a Social worker about a Local Authority Care Home.

The DST is the Decision Support Tool that gets filled in to check whether you are entitled to Funded Nursing Care within a home or the full CHC (Continuing Healthcare).
Not every hospital has a Discharge Unit but basically, they are wards where you stay but there isn't a Doctor attached to the unit. There are nurses who do the basic medical care like taking OBs and keep the patients clean. It means that there is a period of respite without a person blocking a medical bed.
Alternatively, some Local Health Authorities have what they call an Assessment Unit where they assess the patient's needs and determine whether the patient should go into a home or go home. This is done with the family involvement.
I think you definitely need to decide what you want to happen and take your stand from there. Incidentally, you can get Continuing Healthcare Funding at home too but it is much more difficult.
There is a Continuing Healthcare group on Facebook who will support you through the process. They are very knowledgeable and you can post anonymously. You are welcome to private message me and I can send you links to the places we have found very helpful.

Notjustaprettyface

Hello icanhandthemback
Thanks for your post
What’s a discharge unit like ?
And what does DST stand for ?
They already know my husband hasn’t got capacity so I don’t know what will happen

Ask for a Social Worker to assess his capacity so they can agree that he can't make the decision and then go to battle.
My Mum was in a discharge unit for 8 or 9 weeks whilst we found her a home. I absolutely refused to let her come home. They cannot make you. If you are looking for a care home ask for their help but even then, you can take your time ensuring that it is the right one.

You don't have to even let them do a Financial Assessment until you have had the DST done for the CHC.

If you think coming home is an option, you need an assessment at your home with the Occupational Health people and a firm care plan in place although the first time we agreed to take Mum home the care plan lasted less than a week and there was so much the carers couldn't do, it was hopeless.

Avoid Friday discharge if possible and do not allow your dh to come home without a care plan already in place.

Don’t get angry, speak calmly and explain your situation and if you have a meeting take someone with you if you can.
Good luck

Stick to your guns Notjustaprettyface. They will use emotional blackmail to get you to do something you’re really not sure about. Remember that if you wear yourself out, become ill or worse you’ll be no good to him at all.

Hello everyone
Just to update you : I ve been told today that the free 6 weeks in a care home don’t exist any more
The discharge team is pushing very hard for my husband to come home
Let battle commence ! …

It is incredibly intrusive having carers in 4 times a day. You would still be exhausted with all the cleaning and washing. If your husband was in a home you would be far more relaxed when you visit, it would be more enjoyable for both of you, albeit a trial getting there. It's a hard decision

Hello !

I would say that every situation is different, people manage differently and carers/social service arrangements vary greatly from area to area.
The thing is, re My Mum, we were offered all sorts of wonderful help that NEVER materialised.By the time even one thing was sorted, she had deteriorated.
Around where I live there are some elderly people who have carers, entering via key box. By the time it takes me to walk up the road (five mins) Go to the shop and back again, (Another ten mins..so 15 in total) The carers have gone, I think really that's no care at all is it? It's just an existence.
In a care home or rather nursing home, they have people on tap 24/7 they have ALL the latest equipment, hoists, chairs, beds, they have a laundry facility and if incontinent they have supplies of pads and a means to dispose of them.Of course it's not ideal, and you have to pick the home with care but realistically I don't think you will manage at home unless say you had an adult child at home as well to help.
What about when you want to have a bath and you are needed instantly to say toilet your husband? You could never just pop to the shops without making huge arrangements, or go to the doctor, or have your hair done or even go in the garden.I'm not trying to frighten you but I think you need to understand how full on it all is.The one thing I would say, and I don't want to frighten you, but in my experience, they never come out of a lengthy hospital stay quite the same, but the good side to that is that they are used to being away from home, meals at set times etc and being 'Cared for' re toilet etc. Only you can make the decision that is right for you both but don't let misplaced feelings of guilt make the decision for you. I really wish you Good Luck and all the best.

You have had so much really good advice and suggestions so I will not offer more but I just want to wish you well. I hope with the support of your children you will make the right decision
for yourself and your dh and in a few weeks all will be well.

pigsmayfly. Tue 10-Oct-23 17:17:30

teachkate Tue 10-Oct-23 18:17:19

100% accurate posts.