My man has had 3 months of rapid deterioration with no diagnosis or help until we reached crisis point at A&E. Only then did we get answers: dehydration, delirium, psychotic delusions, Charles Bonnet Syndrome, silent strokes, vascular dementia and depression. In addition he has sight problems and a stroke was detected. On top of this we got a diagnosis of Alzheimers, from the Memory Clinic. Having spent the last week in hospital he is now deemed medically fit for discharge! However is now bed bound and has lost all independence and very confused. Our daughters think it is time for a care home. I'm overwhelmed with emotions, but cannot even imagine how I would cope with his needs now. Any thoughts on the situation?
Medically fit for discharge
- Thread starter Pollywobble
- Start date
Hi @Pollywobble
I'm sorry to read your post and the problems your man has and is having.
My experience when I was in your situation was as follows and may (or may not) help you.
My OH had Alz's, was walking about home etc with two sticks, was going up and down stairs, to the shower, etc and we were able with a wheel chair to get her into the car and go out for trips, or to the memory singers, dementia cafe etc and life was restricted but OK
She then had a fall, and after various tests and scans in A&E, and whilst waiting for test results, as they needed the bed, she was transferred to an ordinary ward in the hospital - it had 4 bays. The staff, including the doctor and the nurses had no great training or experience with dementia patients, which didn't really help at all.
The floor in the ward was blue/green plastic tiles. My OH had (and has) Alz's (and other conditions, eg epilepsy, but her multiple myeloma bone cancer is in remission). The floor to my OH looked like water and so she thought it unsafe to get out the bed. The nurse in charge made it forcefully plain that they didn't have enough staff, or time, for two of them to try and help my wife use a frame to go to the toilet. She said she'll mark my wife as bedbound and she'll have to use a bed pan ands/or a pad to go to the toilet. As prior to being in hospital my OH was used to walking with sticks and to using an ordinary toilet, and se was not incontinent. However, as she thought it unsafe to get out of bed, she didn't get out of bed. She did not recognise a bedpan or a pad as a toilet, and so didn't go - that is didn't urinate or have a bowel movement for more than three days! by which time she was v uncomfortable and getting worse. Her Alz's meant she couldn't really hold safely a cup without spilling it, and she couldn't handle cutlery. The catering staff's job was to bring the food, refill the water jug and mug, and later to collect. Nobody had time to check - if they had even thought about it, which they probably didn't - whether food was within reach - and mostly it wasn't - or to check whether my wife was taking in liquids, which she wasn't. Result was dehydration , triggering a seizure which was wholly preventable. Test results all OK., so they said my wife was medically fit to leave. However, they said they need to do an assessment of her care needs before allowing discharge.
Shortage of physio's meant that my OH was in that bed for over two weeks or nearly three by the time a physio came to assess her - he said there were 3 physio's but one was ill, one was on hols, and so he was covering 5 wards! From my OH's point of view there was this strange man trying to tell her what to do but she couldn't really process what he said and he said it all too fast and he didn't understand that she couldn't understand him! So she didn't and couldn't follow his instructions. So he confirmed she was bedbound and now had wasted leg muscles and her tendons and ligaments had tightened and shrunk through lack of use. We also had to wait all this time for the occupational therapist to come and assess my OH. The OT said we needed a hospital bed at home, plus an air mattress with motor to prevent bed sores, and a commode. This was interesting. If she was bedbound, according to them, how did they think she was going to get to and from a commode?. Does the bed come with sides? I asked (like the bed in the hospital). OT said no, they don't like to restrict people. Then we had to wait for these items to be delivered at home, before discharge from hospital. They also put in place a care company of their choice to have two carers visit for 30 mins a visit 4 times a day, and they pay for the first 6 weeks. After that, as my OH's savings are above the limit, we'd have to sort ourselves out.
You can see what's coming. During my OH's first night at home in this bed with no sides in our dining room, she fell out of bed and bumped her head. As she's on blood thinners for her AF, I called an ambulance and she was taken back to hospital. The doctor came to see her and said Didn't I discharge this lady yesterday? I said yes and explained the situation. So they had to do the tests, the scan etc to ensure no internal bleeding. We then had to see the OT before discharge, and I demanded we had sides for the bed, plus a hoist to lift her in and out of bed and a chair (with air pressure cushions), otherwise she'd spend the rest of her life just in this bed. OT didn't agree to hoist or chair! Then sides for bed were delivered so my OH could come back home.
Yes, you've guessed. The sides for the bed are like horizontal bars. So during her second first night back home (if you see what I mean) she got her legs caught by the ankles in between these horizontal bars, and scraped her ankles and skin. So I had to phone hospital OT to order covers for the sides for the bed. What a palaver!
I then had to get on to the Local Authority Rehabilitation Health Team and their OT came to visit. The first thing she said was You need a hoist and a chair. I said Yes please. The second thing was You need the incontinence nurse to come and see you soonest if your OH can no longer weight bear and can't go to the toilet, and we'll get that commode she can't use taken away.
That all was in late June/early July 2022. My wife has not been able to walk since then. So, she hasn't been out of bed or out of chair since then!
We carried on with the carers from the same company the NHS had contracted, at the same price, but I said we only need three visits per day. I do the food, and I have to cut everything up and feed her her food, and her drinks. I sort out her meds in morning and evening. I wash her hair - I bought an inflatable head bath that fits round whilst she's lying in bed - do finger and toe nails. The carers sort out her toileting and changing of clothes for my OH and for the bed - we have those sliding sheets to move my OH about. I do the laundry. I think overall, it's cheaper this way than a care home, and I spend time with my OH for music, tv, activities so far as she can manage or understand. Since being bedbound she has deteriorated. Not being in a care home means that my trips out are very restricted. I have a sitter from Mind for 3 hours a week - this is now means tested in my area - used to be free as LA ASS used to pay. I have one of my sons come once a week so that I have an evening per week out as well. I feel I can leave my OH to do jobs round the house, in the garden and even going out to do the shopping.
Sorry for length of post, if you're still reading.
One sort of benefit about my OH being bedbound is that I always know where she is! So there's no wandering off. She's not at risk of falling, as she doesn't walk.
So it is up to you as to how much you want to do as a carer for your husband and thus whether you have it at home with carers coming in and out, or whether you just visit him in a care home, who have day staff, night staff, staff for cleaning, staff for shopping and cooking, staff for laundry etc. I don't really mind being that staff! I have told my OH that if she's in any way unhappy she should complain to the management!
Best wishes
I'm sorry to read your post and the problems your man has and is having.
My experience when I was in your situation was as follows and may (or may not) help you.
My OH had Alz's, was walking about home etc with two sticks, was going up and down stairs, to the shower, etc and we were able with a wheel chair to get her into the car and go out for trips, or to the memory singers, dementia cafe etc and life was restricted but OK
She then had a fall, and after various tests and scans in A&E, and whilst waiting for test results, as they needed the bed, she was transferred to an ordinary ward in the hospital - it had 4 bays. The staff, including the doctor and the nurses had no great training or experience with dementia patients, which didn't really help at all.
The floor in the ward was blue/green plastic tiles. My OH had (and has) Alz's (and other conditions, eg epilepsy, but her multiple myeloma bone cancer is in remission). The floor to my OH looked like water and so she thought it unsafe to get out the bed. The nurse in charge made it forcefully plain that they didn't have enough staff, or time, for two of them to try and help my wife use a frame to go to the toilet. She said she'll mark my wife as bedbound and she'll have to use a bed pan ands/or a pad to go to the toilet. As prior to being in hospital my OH was used to walking with sticks and to using an ordinary toilet, and se was not incontinent. However, as she thought it unsafe to get out of bed, she didn't get out of bed. She did not recognise a bedpan or a pad as a toilet, and so didn't go - that is didn't urinate or have a bowel movement for more than three days! by which time she was v uncomfortable and getting worse. Her Alz's meant she couldn't really hold safely a cup without spilling it, and she couldn't handle cutlery. The catering staff's job was to bring the food, refill the water jug and mug, and later to collect. Nobody had time to check - if they had even thought about it, which they probably didn't - whether food was within reach - and mostly it wasn't - or to check whether my wife was taking in liquids, which she wasn't. Result was dehydration , triggering a seizure which was wholly preventable. Test results all OK., so they said my wife was medically fit to leave. However, they said they need to do an assessment of her care needs before allowing discharge.
Shortage of physio's meant that my OH was in that bed for over two weeks or nearly three by the time a physio came to assess her - he said there were 3 physio's but one was ill, one was on hols, and so he was covering 5 wards! From my OH's point of view there was this strange man trying to tell her what to do but she couldn't really process what he said and he said it all too fast and he didn't understand that she couldn't understand him! So she didn't and couldn't follow his instructions. So he confirmed she was bedbound and now had wasted leg muscles and her tendons and ligaments had tightened and shrunk through lack of use. We also had to wait all this time for the occupational therapist to come and assess my OH. The OT said we needed a hospital bed at home, plus an air mattress with motor to prevent bed sores, and a commode. This was interesting. If she was bedbound, according to them, how did they think she was going to get to and from a commode?. Does the bed come with sides? I asked (like the bed in the hospital). OT said no, they don't like to restrict people. Then we had to wait for these items to be delivered at home, before discharge from hospital. They also put in place a care company of their choice to have two carers visit for 30 mins a visit 4 times a day, and they pay for the first 6 weeks. After that, as my OH's savings are above the limit, we'd have to sort ourselves out.
You can see what's coming. During my OH's first night at home in this bed with no sides in our dining room, she fell out of bed and bumped her head. As she's on blood thinners for her AF, I called an ambulance and she was taken back to hospital. The doctor came to see her and said Didn't I discharge this lady yesterday? I said yes and explained the situation. So they had to do the tests, the scan etc to ensure no internal bleeding. We then had to see the OT before discharge, and I demanded we had sides for the bed, plus a hoist to lift her in and out of bed and a chair (with air pressure cushions), otherwise she'd spend the rest of her life just in this bed. OT didn't agree to hoist or chair! Then sides for bed were delivered so my OH could come back home.
Yes, you've guessed. The sides for the bed are like horizontal bars. So during her second first night back home (if you see what I mean) she got her legs caught by the ankles in between these horizontal bars, and scraped her ankles and skin. So I had to phone hospital OT to order covers for the sides for the bed. What a palaver!
I then had to get on to the Local Authority Rehabilitation Health Team and their OT came to visit. The first thing she said was You need a hoist and a chair. I said Yes please. The second thing was You need the incontinence nurse to come and see you soonest if your OH can no longer weight bear and can't go to the toilet, and we'll get that commode she can't use taken away.
That all was in late June/early July 2022. My wife has not been able to walk since then. So, she hasn't been out of bed or out of chair since then!
We carried on with the carers from the same company the NHS had contracted, at the same price, but I said we only need three visits per day. I do the food, and I have to cut everything up and feed her her food, and her drinks. I sort out her meds in morning and evening. I wash her hair - I bought an inflatable head bath that fits round whilst she's lying in bed - do finger and toe nails. The carers sort out her toileting and changing of clothes for my OH and for the bed - we have those sliding sheets to move my OH about. I do the laundry. I think overall, it's cheaper this way than a care home, and I spend time with my OH for music, tv, activities so far as she can manage or understand. Since being bedbound she has deteriorated. Not being in a care home means that my trips out are very restricted. I have a sitter from Mind for 3 hours a week - this is now means tested in my area - used to be free as LA ASS used to pay. I have one of my sons come once a week so that I have an evening per week out as well. I feel I can leave my OH to do jobs round the house, in the garden and even going out to do the shopping.
Sorry for length of post, if you're still reading.
One sort of benefit about my OH being bedbound is that I always know where she is! So there's no wandering off. She's not at risk of falling, as she doesn't walk.
So it is up to you as to how much you want to do as a carer for your husband and thus whether you have it at home with carers coming in and out, or whether you just visit him in a care home, who have day staff, night staff, staff for cleaning, staff for shopping and cooking, staff for laundry etc. I don't really mind being that staff! I have told my OH that if she's in any way unhappy she should complain to the management!
Best wishes
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Oh blimey Chizz that is awful. We all know that the NHS is on its knees but hearing your story really brings it home to me how precarious our situation is if our loved ones go into hospital now.
I remember hearing a story years ago about hospitals in Greece where the family had to come in with the patient and do all the washing feeding toiletting etc with the hospital just providing the medical care. It seemed shocking at the time but we are definitely at that point now in this country. Except they don’t always let you stay and care for them here - and they hang on to them for far too long! The whole system is broken. I don’t blame the doctors and nurses they are running around like crazy most of the time, but it must be awful not having time for any humanity in the system.
You have done an amazing job fighting for your wife, do look after yourself ❤️
I remember hearing a story years ago about hospitals in Greece where the family had to come in with the patient and do all the washing feeding toiletting etc with the hospital just providing the medical care. It seemed shocking at the time but we are definitely at that point now in this country. Except they don’t always let you stay and care for them here - and they hang on to them for far too long! The whole system is broken. I don’t blame the doctors and nurses they are running around like crazy most of the time, but it must be awful not having time for any humanity in the system.
You have done an amazing job fighting for your wife, do look after yourself ❤️
Sorry to hear about your man @Pollywobble
It certainly sounds like it's time for a care home where he will be safe and secure and his needs will be met. I think as part of the hospital discharge process you are likely to be offered having him at home with 4 daily care visits, or a place in a care home so that his needs can be assessed. This after care is free for up to 6 weeks.
You have an awful lot to think about @Pollywobble , and please remember that you need to think about yourself (what's best for you) as well as thinking about your fella.
S x
It certainly sounds like it's time for a care home where he will be safe and secure and his needs will be met. I think as part of the hospital discharge process you are likely to be offered having him at home with 4 daily care visits, or a place in a care home so that his needs can be assessed. This after care is free for up to 6 weeks.
You have an awful lot to think about @Pollywobble , and please remember that you need to think about yourself (what's best for you) as well as thinking about your fella.
S x
Hi @sapphire turner
Thank you for your kind words.
You say the hospitals don't always let you stay and care for them. Have your heard of "John's Campaign" - nearly all NHS Trusts have signed up for this. Check to see if your hospital has adopted John's Campaign. Look it up https://johnscampaign.org.uk/
Insist on your rights, if necessary.
My Mum is in a care home, but was admitted to our local hospital for five days last October. As she has advanced mixed dementia and has no speech or understanding I spent all that time at her bedside, just going home to sleep. And a good job I did. Lots of NHS staff have absolutely no idea how to care for dementia patients, even if they had the time to do it. I was feeding Mum as she can't feed herself, and if I hadn't been there she wouldn't have been fed or had a drink. She was on antibiotics (given by syringe), and once they realised how much I was able (and willing to do) the staff just used to drop the full syringe on Mum's table, and I gave it to her. Had I not, would she have got her antibiotics? John's Campaign is a great idea and a lifesaver as far as I'm concerned, but its so wrong that staff rely on family to do what is essentially their job
Hello @Pollywobble . I am sorry to read your post, but I think in your heart of hearts you know it’s time for your man to move into care, to best meet his complex needs. Your daughters are ahead of you on this one!
In my case, our PWD was muddling along at home with daily support from us and his neighbours. Then he had a stroke and was in hospital. I asked for an assessment as I could see things had changed for the worse. After having to refuse to continue to help hum at home, and very firmly stating we were withdrawing our care due to health and safety concerns ( it was an accident waiting to happen), he was discharged to a D2A bed in a care home, for 6 weeks ( paid by the LA). Eventually it was agreed that he needed 24 hour care ( due to wandering etc) and the SS agreed to him staying at the care home ( self-funded). He has thrived there since going there last September, even though he still occasionally says he wants to leave, but this is tailing off now. He has made friends, enjoys the company and the activities, especially seated gym and musical afternoons, bingo etc. It really was the best decision for him, and we got our own lives back too. Good luck with your decision.
In my case, our PWD was muddling along at home with daily support from us and his neighbours. Then he had a stroke and was in hospital. I asked for an assessment as I could see things had changed for the worse. After having to refuse to continue to help hum at home, and very firmly stating we were withdrawing our care due to health and safety concerns ( it was an accident waiting to happen), he was discharged to a D2A bed in a care home, for 6 weeks ( paid by the LA). Eventually it was agreed that he needed 24 hour care ( due to wandering etc) and the SS agreed to him staying at the care home ( self-funded). He has thrived there since going there last September, even though he still occasionally says he wants to leave, but this is tailing off now. He has made friends, enjoys the company and the activities, especially seated gym and musical afternoons, bingo etc. It really was the best decision for him, and we got our own lives back too. Good luck with your decision.
Thank you @Chizfor taking the time to reply. Your dementia journey sounds like an eventful one. You have done an amazing job.
Today, I got told again but this time by a doctor, that my man is medically ready for discharge. I pointed out that he was threatening to kill me (from his hospital bed) and even my man didnt think Id be save living with him. She simply asked if I would be by myself at home with him! Yes 24/7 without help. She said she'd look into an assessment of needs at home. I was gobsmacked that she seemed unperturbed by his threat of violence! And that is whilst being looked after by a whole team at the hospital!!
Today, I got told again but this time by a doctor, that my man is medically ready for discharge. I pointed out that he was threatening to kill me (from his hospital bed) and even my man didnt think Id be save living with him. She simply asked if I would be by myself at home with him! Yes 24/7 without help. She said she'd look into an assessment of needs at home. I was gobsmacked that she seemed unperturbed by his threat of violence! And that is whilst being looked after by a whole team at the hospital!!
You are right @sapphire turner ! I am at the hospital with him for 8 hours a day. The nurses do an amazing job and with such patience, but havent time for everything. Hes partially sighted so cant even see where his meal/drink/call button is. He cant make decisions about what to eat so just says no thankyou to food and drink. Ive soon learnt to say something like "They've got custard. You like that. Do you want some?" Then he agrees. He can't manipulate a knife and fork, so I cut his food up and hand him a spoon. Yesterday he couldn't manage this. I had to spoon feed him. Today he has refused food, drink or tablets. He can't remember how to use the call button. Yet he's ready to go home where I get no help! How would he manage in hospital without help, I wonder.
Hi @Pollywobble
I'm sure you know: there is no legal obligation on you to look after any other adult, including your spouse.
If you feel in danger or unsafe or under threat of abuse or violence you do not have to have your spouse at home with you.
In no uncertain terms, tell the OT, the doctor, the hospital administrator and especially the LA ASS that you not having him at your home. They, the LA ASS. are obliged to arrange a placement for assessment with a care home, at the cost of the LA ASS (for up to 6 weeks), straight from hospital.
When they have assessed your OH's needs, then they know what care homes can cope with is behaviours. Within the 6 weeks, they will want to do a means test for the care fees.
Even if your house is in joint names of you and OH, or just in OH's names, as a spouse you have a right to live in the matrimonial home, in which case the house value should be disregarded in the means test. You are not legally obliged to pay for the care fees for our OH.
Stay strong.
Best wishes and a hug.
I'm sure you know: there is no legal obligation on you to look after any other adult, including your spouse.
If you feel in danger or unsafe or under threat of abuse or violence you do not have to have your spouse at home with you.
In no uncertain terms, tell the OT, the doctor, the hospital administrator and especially the LA ASS that you not having him at your home. They, the LA ASS. are obliged to arrange a placement for assessment with a care home, at the cost of the LA ASS (for up to 6 weeks), straight from hospital.
When they have assessed your OH's needs, then they know what care homes can cope with is behaviours. Within the 6 weeks, they will want to do a means test for the care fees.
Even if your house is in joint names of you and OH, or just in OH's names, as a spouse you have a right to live in the matrimonial home, in which case the house value should be disregarded in the means test. You are not legally obliged to pay for the care fees for our OH.
Stay strong.
Best wishes and a hug.
Thank you for your kind reply. There seems little talk of anything, but him going home. They look surprised that nothing is in place. I just don't know how to get help, although I have tried desperately. I'd given up trying.
You're right about thinking of myself. That doesn't seem to be factored in at all. I've spent 3 months in semi darkness ( due to his eye conditions) and barely leaving the house (as he needs constant attention.) A care home seems my only way forward, but there has only been talk of our home. Hence I'm confused!
Ridiculous isn't it @Kevinl ! I was so stressed when I took him to A&E that I ended up collapsing and in there myself. He was in majors and I was in minors!!
He's on an ordinary ward as the they are full on the ward that he should be on. He climbed out of bed and fell the first night he was there. They rang me to tell me and asked if he was usually confused. Surely they should know have been informed that he has dementia, hallucinations and delusions. The staff are fantastic, but the information doesn't seem to be shared.
Oh thank-you @DeeCee7. This gives me hope. I will have to be firm from the safety aspect then. He wants to go home, but also threatened to kill me this morning. The doctor didn't seem concerned by this, but I am!
@Pollywobble
They have pushed you to the point where you will just have to say to them, point blank, that you will not have him home under any circumstances. You have already given them plenty of reasons why that should be so - his threat to kill you is not to be ignored!
When you have said this, if they are still talking about him going home, you will have to put your position in writing to the consultant and to the social worker. Say that you are happy to join a case conference/care planning meeting, but it must be on the strict understanding that you cannot - and will not - care for him at home.
My sense is that they want the bed and don't see it as their problem to think about what happens after he leaves. That has to change, and quickly.
They have pushed you to the point where you will just have to say to them, point blank, that you will not have him home under any circumstances. You have already given them plenty of reasons why that should be so - his threat to kill you is not to be ignored!
When you have said this, if they are still talking about him going home, you will have to put your position in writing to the consultant and to the social worker. Say that you are happy to join a case conference/care planning meeting, but it must be on the strict understanding that you cannot - and will not - care for him at home.
My sense is that they want the bed and don't see it as their problem to think about what happens after he leaves. That has to change, and quickly.
Threatening to kill is just too much, at least when I woke up one morning and found my wife sitting there with a carving knife in her hands on the bedside table it was "in case someone came to hurt me" while I was asleep, aparrently.
Get out now.
K
Get out now.
K
Thank you for your prompt reply @Kevinl . I will return to the hospital tomorrow armed with this. I love my man so much, and want to get him the help he needs. It's the system that's a problem.
Contact the hospital Social Workers department - they are the ones who work out what happens after someone is medically fit for discharge.
Tell them that you cannot look after him and are afraid that he will harm you
The problem that you are up against is that SS is required by law to go for the "least restrictive option" and a care home is the most restrictive option, so they usually only go for this if it has been shown that all other options do not work. In practice this means that they want to try carers going in 4 times a day and its only when this fails that they consider a care home.
You will have to dig your heels in.
Tell them that you cannot look after him and are afraid that he will harm you
The problem that you are up against is that SS is required by law to go for the "least restrictive option" and a care home is the most restrictive option, so they usually only go for this if it has been shown that all other options do not work. In practice this means that they want to try carers going in 4 times a day and its only when this fails that they consider a care home.
You will have to dig your heels in.
Keep up your resolve @Pollywobble. He’s out of the house now and in their care, so you are almost there. Just keep refusing to have him home, it’s not safe or in his best interests. Maybe try not going into the hospital for a day or two and see how they cope without you, as you are supporting him there and making it look manageable. @canary is right, they will try to go down the 4x a day carer route, as they tried in our case, but I pointed out that was happening already ( but with us unpaid carers!) and it wouldn’t work. As he’s bedbound now he needs 24 hour care, which can’t be provided at home as it’s prohibitively expensive. I am not sure about the “ least restrictive option” being a feadible option for SS to persue, as he is bedbound anyway.
You will have to develop a rhino skin to get through this, but you will! Tell them there will be no-one home if he’s discharged. The house will be locked and you are going into respite yourself for a while and will not tell them where. Good luck!
You will have to develop a rhino skin to get through this, but you will! Tell them there will be no-one home if he’s discharged. The house will be locked and you are going into respite yourself for a while and will not tell them where. Good luck!
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