Can I refuse to have him home?

[yorkie46]

My husband is currently in hospital with pneumonia. When a GP came to see him a few days ago he diagnosed a chest infection. I had mentioned that I am also concerned about his increasingly poor mobility and the fact he often doesn't have the strength to stand and take his own weight. This has been particularly apparent during the night. He uses a bottle in his bedroom at night but has recently been unable to get out of bed in time and has ended up urinating on the side of the bed and the floor before I can get to him. The doctor asked him to get up from his chair and walk using his frame. After a few steps he had seen enough and he said we need to think about him going into a care home. My husband doesn't want to and I said I don't want him to but I don't feel I can care for him properly any more. He is a lot bigger and heavier than me and I find it difficult to support him when he can't stand. These most recent developments have caused me to need chiropractic treatment, I've strained the muscles around my hip. Added into this is the problem of incontinence which has become worse. After washing three sets of clothes in a day I got some incontinence pants for him but he doesn't understand and still keeps wanting to get up in the night to use a bottle. I know some of this may be caused by the current infection but it had already started. I'm the night I had to get him into hospital he was constantly trying to get out of bed, he was confused to the point I had no choice but to call an ambulance. I really feel I can't come with him at home any more much as I would like to. I'm barely getting any sleep because he's up in the night. I don't have any carers to help. The hospital physio keeps talking about a care package with four visits a day. He wouldn't need four but I said that there would be nobody there in the night when I needed them. I told her what the GP had said about a care home. She said it was very difficult to transfer someone from hospital to a care home. She made it sound like I wanted to get rid of him. She mentioned rehab which I said I would like. She said that would give me a bit more time without him then I might think differently. I felt she just didn't understand my point of view at all. She said he would need a mental capacity assessment which can't be done until.he is ready to be discharged. I pointed out that I just want him to be looked after properly and to be safe. If he is at home I won't be able to go out at all. He is not keen on the idea of carers either and would find it difficult if they didn't come at the times he wanted them.

If he is assessed as having mental capacity does his decision over rule anything I say?

Can I refuse to have him home?

Who does the mental capacity assessment and what should their qualification be?

What form does the assessment take?

Does anyone have any further advice. I have spoken to my admiral nurse who is willing to support me by talking to the medical staff. It still astounds me how little hospital staff understand about dementia.

 

[Grannie G]

Hello @yorkie46. Welcome to Dementia Talking Point.

I managed to get my husband to accept residential care when his mobility was going by saying the doctor wanted him to go into a convalescent home to build up his strength and he accepted this willingly.

I know it was deceitful but it was much better to put the onus on the doctor . My husband was well able to realise his mobility and his strength was failing.

I hope this might help you.

 

[cobden 28]

My husband is currently in hospital with pneumonia. When a GP came to see him a few days ago he diagnosed a chest infection. I had mentioned that I am also concerned about his increasingly poor mobility and the fact he often doesn't have the strength to stand and take his own weight. This has been particularly apparent during the night. He uses a bottle in his bedroom at night but has recently been unable to get out of bed in time and has ended up urinating on the side of the bed and the floor before I can get to him. The doctor asked him to get up from his chair and walk using his frame. After a few steps he had seen enough and he said we need to think about him going into a care home. My husband doesn't want to and I said I don't want him to but I don't feel I can care for him properly any more. He is a lot bigger and heavier than me and I find it difficult to support him when he can't stand. These most recent developments have caused me to need chiropractic treatment, I've strained the muscles around my hip. Added into this is the problem of incontinence which has become worse. After washing three sets of clothes in a day I got some incontinence pants for him but he doesn't understand and still keeps wanting to get up in the night to use a bottle. I know some of this may be caused by the current infection but it had already started. I'm the night I had to get him into hospital he was constantly trying to get out of bed, he was confused to the point I had no choice but to call an ambulance. I really feel I can't come with him at home any more much as I would like to. I'm barely getting any sleep because he's up in the night. I don't have any carers to help. The hospital physio keeps talking about a care package with four visits a day. He wouldn't need four but I said that there would be nobody there in the night when I needed them. I told her what the GP had said about a care home. She said it was very difficult to transfer someone from hospital to a care home. She made it sound like I wanted to get rid of him. She mentioned rehab which I said I would like. She said that would give me a bit more time without him then I might think differently. I felt she just didn't understand my point of view at all. She said he would need a mental capacity assessment which can't be done until.he is ready to be discharged. I pointed out that I just want him to be looked after properly and to be safe. If he is at home I won't be able to go out at all. He is not keen on the idea of carers either and would find it difficult if they didn't come at the times he wanted them.

If he is assessed as having mental capacity does his decision over rule anything I say?

Can I refuse to have him home?

Who does the mental capacity assessment and what should their qualification be?

What form does the assessment take?

Does anyone have any further advice. I have spoken to my admiral nurse who is willing to support me by talking to the medical staff. It still astounds me how little hospital staff understand about dementia.

Some years ago my later stepdad fell and fractured his hip at the sametime that my Mum was due to go into hospital for a hysterectomy (she was in her late 70's at the time). While Mum was in hospital for the operation the local social services department were proposing to send in carers four times a day but none at night, which is when carers were really needed because stepdad insisted on struggling to get up in the middle of the night for the toilet and he kept falling over. Stepdat was around 6 ft tall and \mum is only 5 ft 3 tall so mum kept on having to call out an an ambuklance for the paramedics to get stepdad up on his feet again without harm being done. Mum had to really dig her heels in and insist that stepdad went into respite care while she was in hospital for this major surgery.

Stepdad was due to be discharged home on the same day that Mum was due to be discharged from hospital; stepdad was asked whether there was anyone at home to look after him and he said 'my wife is at home to look after me'. No care support was organised by the hospital and Mum had to again dig her heels in and insist stepdad stayed in respite care as she was unable to look after herself at home, lety alone a stubborn old man who didn't realise the effect that a hysterectomy has on a woman's ability to do even the simplest of household tasks. In the end, stepdad stayed in his respite care place with Mum having the carer visits at home instead. Stepdad eventually moved to a permanent care home placing and didn't come back home to live, before he died 18 months later.

The point of this rather long story is that social services departments don't provide night-time career visits because if the expense; they prefer to keep folk in their own homes for as long as possible with up to a maximum of 4 care visits per day. If you are genuinely unwilling or unable to care for your husband at home after discharge, then you are going to have to really dig your heels in and insist he goes into permanent residential care.

 

[MartinWL]

The point of this rather long story is that social services departments don't provide night-time career visits because if the expense; they prefer to keep folk in their own homes for as long as possible with up to a maximum of 4 care visits per day. If you are genuinely unwilling or unable to care for your husband at home after discharge, then you are going to have to really dig your heels in and insist he goes into permanent residential care.

I agree with this. @yorkie46 you need to be very firm that you refuse to provide 24 hour care or night time care. You must not injure yourself or there will be two of you to care for. Point out firmly that he is in serious danger at home, he could fall and crack his skull on furniture etc so he needs card around the clock. Take an unyielding line with social services, remind them that the responsibility is theirs. ( Although they don't need to pay the bills if your husband has more than about £23500 in savings)

 

[kindred]

My husband is currently in hospital with pneumonia. When a GP came to see him a few days ago he diagnosed a chest infection. I had mentioned that I am also concerned about his increasingly poor mobility and the fact he often doesn't have the strength to stand and take his own weight. This has been particularly apparent during the night. He uses a bottle in his bedroom at night but has recently been unable to get out of bed in time and has ended up urinating on the side of the bed and the floor before I can get to him. The doctor asked him to get up from his chair and walk using his frame. After a few steps he had seen enough and he said we need to think about him going into a care home. My husband doesn't want to and I said I don't want him to but I don't feel I can care for him properly any more. He is a lot bigger and heavier than me and I find it difficult to support him when he can't stand. These most recent developments have caused me to need chiropractic treatment, I've strained the muscles around my hip. Added into this is the problem of incontinence which has become worse. After washing three sets of clothes in a day I got some incontinence pants for him but he doesn't understand and still keeps wanting to get up in the night to use a bottle. I know some of this may be caused by the current infection but it had already started. I'm the night I had to get him into hospital he was constantly trying to get out of bed, he was confused to the point I had no choice but to call an ambulance. I really feel I can't come with him at home any more much as I would like to. I'm barely getting any sleep because he's up in the night. I don't have any carers to help. The hospital physio keeps talking about a care package with four visits a day. He wouldn't need four but I said that there would be nobody there in the night when I needed them. I told her what the GP had said about a care home. She said it was very difficult to transfer someone from hospital to a care home. She made it sound like I wanted to get rid of him. She mentioned rehab which I said I would like. She said that would give me a bit more time without him then I might think differently. I felt she just didn't understand my point of view at all. She said he would need a mental capacity assessment which can't be done until.he is ready to be discharged. I pointed out that I just want him to be looked after properly and to be safe. If he is at home I won't be able to go out at all. He is not keen on the idea of carers either and would find it difficult if they didn't come at the times he wanted them.

If he is assessed as having mental capacity does his decision over rule anything I say?

Can I refuse to have him home?

Who does the mental capacity assessment and what should their qualification be?

What form does the assessment take?

Does anyone have any further advice. I have spoken to my admiral nurse who is willing to support me by talking to the medical staff. It still astounds me how little hospital staff understand about dementia.

all sympathy, my husband was transferred to a nursing home from hospital under similar circumstances. Ask to talk to the hospital social worker and tell them you can no longer manage at home. My goodness, you have done enough! Hope it goes well. Warmest, kindred.

 

[Weasell]

I would push for rehab.
You will then have several weeks of staff observing him. They will also be able to do
night observations and report that he does not sleep through the night.
When discharge comes around you will be dealing with different health professionals .
Rehab will be better for him as well, a team of physios will work to improve his mobility.
Very early on I would request to speak to the manager of the rehab unit and get advice from them, they have seen it all before and if he does go on to a care home it doesn’t come out of their budget ! So you are likely to get impartial advice in your best interests. ( Don’t forget to stress your health issues, back problems etc).

In answer to your questions, yes you can refuse to have him home. Different people carry out the capacity tests. If they do the test at a time he is not confused then the odds of him passing are quite high. The mental capacity act is designed to protect the vulnerable. You can have capacity for one thing and not another.

 

[yorkie46]

Thanks to everyone for your advice and suggestions. I had a long conversation yesterday with a ward sister who actually seemed to understand! At the end of our conversation she said she thought the best thing would be for him to an assessment care home where he will get physio and other input to assess how much he is able to do himself. I understand this can be for up to 6 weeks and from there it will be decided whether they feel he is safe to return home. It is still not certain that they will recommend full-time care so I still might have a battle on my hands.I think he will also still need a mental capacity assessment but it does at least but me more time to make my feelings known and investigate suitable placements. The sister was going to write this in his discharge plan. He's nowhere near ready for discharge yet, still needing oxygen and keeps taking it off because he's confused. He has a catheter and is still in antibiotics. He's also been out on insulin because his blood sugars was high, they think due to the infection. I did speak to him yesterday but he was confused. He said 'I had a general anaesthetic yesterday well it wasn't a general it was all done on computer, I don't know what it was' I have no idea what that was all about! I'm going to write some information about his dementia journey so far and how it has affected me over the years just in case I need it. It will help to get everything straight in my head too. If anyone has any other suggestions they will be gratefully received. I had to battle a local authority 10 years ago to get my mum into the care she needed, somehow this is different. Unfortunately she died in 26th January after falling and breaking her second hip. She was 96 and had advanced dementia but I can't attend the funeral as I live 250 miles away! Difficult times.

 

[Zsazsa]

So sorry to hear you can't attend your mother's funeral, Yorkie46 - that must be very upsetting - and also the many problems around your husband's care. I was in this position last October: absolutely on my knees after caring for my husband with AD for nine years, and just wanted some respite at first. We had a number of assessments, including mental capacity, and also for me, as a carer, and he was allocated a social worker. From then, it became clear to me that - despite Covid - I couldn't continue to care for him 24/7, with frequent "accidents" and falls, and only minimal input by paid-for carers. I told the social worker this and he actually helped me find the right care home for my husband...During this period, the stress of making this decision and the first weeks in the home when my husband didn't settle, were awful, and affected my health. But now I realise it was the right decision for both of us.
I do hope you can think of your own needs on an equal footing with those of your husband as this is no life for either of you at present. Good luck with finding the support you need and the strength to make your needs clear to others.

 

[yorkie46]

Well they say they've done a mental capacity assessment and he understands his needs and that I can't manage everything any more. He wants to come home and has agreed to have carers. So they're now arranging a mega package of carers which I don't want. They're saying four visits during the day and two drop in visits during the night! They say he can manage all sorts of things himself but they haven't assessed that ability at home and he hasn't been in the shower for over a week now. I've been told he has made his decision and he has the right to come home because it's his home too. I've been backed into a corner but I'm not happy with the outcome. I don't think it will work having all these carers because they won't necessarily be here when he wants to get up or go to bed and I will end up doing it. When I've spoken to him he is now desperate to come home and is threatening to walk out. I told him today we need to wait until they get the carers sorted out. He said yes, they say that's because you say you can't cope. So he clearly doesn't understand that I can't manage. I've not told them because I can't now say I don't want him home. If I do it will destroy out relationship. I can't fight them any more so I'm expecting him home soon. Everyone tells me I have to get out when I can and not worry about him because the hospital day he's safe. I will need to see for myself. They say he doesn't need incontinence pads in the day but when I spoke to him he said he had one on! Well we'll see what happens where comes home. Watch this space!

 

[Sarasa]

Hi @yorkie46, is there anyway you can push for a few weeks in rehab to properly assess your husbands mobility and whether or not you can manage at home with carers coming in? I'm not at all sure how the emergency visits at night are supposed to work for instance.
I can see that he has a right to come back to his house, but you have rights too, and if you end up in hospital because you've hurt yourself trying to care for him he'll end up in a care home anyway.
I'm sure others that have been in this situation will be along with their experiences soon, but in the meantime stay strong and don't agree to anything you don't think has a chance of working.

 

[Weasell]

You are worried about declining to having him home ruining your relationship!
When he comes home and you fail to meet his every demand how is that going to effect your relationship?

If you do have him home please keep a diary. No matter how tired or depressed you feel just write up the days events.

Keep an eye on your own health, it would be dreadful if you developed back problems or similar.

I worked in a rehab unit, one day a patient so terrible was going home to his wife. When I was told then news I quipped ‘ honey I’m home’ and all the staff fell around laughing. They were not laughing with humour, they were laughing at how terrible it would be for the wife to manage. The lesson here is if agree to take him and whatever else goes with the package they will let you.

 

[canary]

You may have to let this care package fail.
Dont rush to do things for him
Leave stuff for the carers, even if he wants you to do it.
Go out sometimes

If the care package fails then there is no other option apart from a care home, but if you bust a gut to make it work, you will just be left to get on with it.

 

[cobden 28]

Well they say they've done a mental capacity assessment and he understands his needs and that I can't manage everything any more. He wants to come home and has agreed to have carers. So they're now arranging a mega package of carers which I don't want. They're saying four visits during the day and two drop in visits during the night! They say he can manage all sorts of things himself but they haven't assessed that ability at home and he hasn't been in the shower for over a week now. I've been told he has made his decision and he has the right to come home because it's his home too. I've been backed into a corner but I'm not happy with the outcome. I don't think it will work having all these carers because they won't necessarily be here when he wants to get up or go to bed and I will end up doing it. When I've spoken to him he is now desperate to come home and is threatening to walk out. I told him today we need to wait until they get the carers sorted out. He said yes, they say that's because you say you can't cope. So he clearly doesn't understand that I can't manage. I've not told them because I can't now say I don't want him home. If I do it will destroy out relationship. I can't fight them any more so I'm expecting him home soon. Everyone tells me I have to get out when I can and not worry about him because the hospital day he's safe. I will need to see for myself. They say he doesn't need incontinence pads in the day but when I spoke to him he said he had one on! Well we'll see what happens where comes home. Watch this space!

Some years ago my latre stepdad had a fall and fractured his hip, shorthy beforeMum (then in her late 70's, she's now 90) was due to go into hospital for a hysterectomy. Stepdad insisted on getting up during the night to go to the toilet and kept faling over so often that Mum got to be on first-name terms with the local paramedics ! When Mum was due to go into hospital for the op., she asked about getting night-time care visits for stepdad but was told this wasn't availab;e and the most they could offer was 4 daily care visits.....not any use when the care was needed at night. Mum had to really stick to her guns and inmsist stepdad went into respite care while she was in hospital, where he would be properly looked after; she couldn't get a definite date for her op until respite care for stepdad was sorted; it tokk a while but eventully a respite place was found.

Then on the day Mum was due to be discharged home after majr surgery she discovered that stepdad was due to be discharged from respite the same day, with no care plan in place; he'd been asked whether there was anybody at home to look after him and he said that his wife was at home to care for him. Stepdad had no idea about the effects of having a hysterectomy on a woman; Mum wasn't able to lift a kettle let alone care for a stubborn older man as well as herself. Again, Mum had to really stick to her guns and insist that she would be inable to care for stepdad at home......in the end stepdad went into a care home, without ever coming home to live. He died in 2003 of heart failure aged 84.

The point of this long story is that where possible social services don't like to put people i nto residential care because of the cost IF there's someone at home that's willing and able to do the necessary. Yet because Mum was inable to care for stepdad herself rsidential care was the only option left - and she really had to try hard to get this organised.

 

[yorkie46]

As expected my husband is now home. I spent until midnight on Friday trying to persuade him not to discharge hjmself! I had numerous phone conversations with hospital staff and a dictor. At 11.30pm the doctor told me he has mental capacity but he had agreed to stay until Saturday morning. When I spoke to him again he said he hadn't agreed to that and just kept pleading with me o to collect him. Eventually I managed to get him to agree on condition I went at 9 next morning. I was advised to call at 8.40. When I did the sister said they couldn't arrange for a nurse to give insulin over weekend and he couldn't come home without it. She said care package can't be arranged till Tuesday. I asked if he knew this. She said he didn't and advised me not to mention it when I spoke to him. I didn't answer his calls at first. When I did I didn't mention it. I later discovered that the sister had told him 'because he asked me directly and I can't lie to a patient'. You can imagine how he felt and what I said. I told her if he walked out it was her responsibility, she said if he did they couldn't stop him because he has mental capacity! I'm the end they managed to arrange for the insulin to be done and I had to agree to manage until the care package starts on Tuesday. I had no option and collected him at 3.30pm. I still haven't heard definitely if the care package is arranged for tomorrow! He was in for 10 days, not given a shower the whole time, pants looked like they'd been work for days! At least now he's clean even if difficult to deal with!!
When will people realise if you tell someone with dementia they can go home that means now?!

 

[nae sporran]

What a horrible weekend you've had @yorkie46. Some of that looks all too familiar. Can I suggest phoning Social Services tomorrow if there is no care package arranged or confirmed by then. They should have an emergency team if you are struggling to cope. Good luck and let us know how it goes.