Removing husband from care home ?

Notjustaprettyface

Does anybody know if I can remove my husband from his care home knowing that I haven’t got LPA or deputyship ?
He has been there since mid October and I am not entirely happy with the place
My main concern is that I always have to nag them to hoist my husband out of bed and put him in a tilt in space chair and take him into the lounge
They seem only too happy to leave him in bed all day and if I didn’t go most days like I do at present, I fear he wouldn’t get out of bed
He has no mobility at present and we are working with a private physio to try and make some progress
If he came home , we would have to have carers as I wouldn’t cope on my own
He has got vascular dementia and delirium but feels well in himself
He keeps asking me to take him out of the care home and I am running out of things to say to him
Can anybody advise please ?
I would be grateful
Thanks

Yes you can. My dad spent 3 months in hospital (given a blood transfusion meant for the man in the next bed) ended up in a nursing home for 5 weeks free, mum & I took it in turns to visit, he was hunched up in a wheelchair sleeping.. whatever time we went he was asleep, I think the care home got fed up with mums interfering! One morning they rang & said he was vomiting coffee grain like blood so was admitted to hospital- severely dehydrated. Hospital just as bad, left wet & soiled. They would leave his food tray & drinks but when we got there, food & drinks untouched, his meds stook to the bed sheets 😩 we decided we would look after him at home. what a difference, he’s well fed, fluids given regularly. So we have one carer for 1hr in the morning & at night. District nurses who are wonderful, 3 times a day to give his insulin. I would involve the social services, you might get the care free if you have under a certain amount in the bank.. but they will let you know what help you can receive. Unfortunately mum has to pay but it’s capped. I spend a couple of hours during the day so that mum can nip into town, otherwise she’s technically house bound too. If you have any family to help all the more better for you. I really believe if we had left dad in a care home, he wouldn’t be here today 😞

The Social Worker managed to get a care package for OH , we had all the usual stuff delivered , the sitting room and utility were turned into his room and en-suite, the OT and Physio came a assessed everything , hoists were provided and upgraded every time he deteriorated, different chairs , different mattress, but the carers had to be retrained every time something was changed
I was awake every morning before 7 as the carers arrived . Some mornings I felt I hardly had time to breath , he didn’t like me out of his sight , tried to climb out of bed , called me to take him home , some days I could have run away
I paid for extra help so I could get out a couple of mornings a week
Just letting you know that even though he was home it wasn’t perfect , especially when he didn’t even know he was home

I remember when someone I know had a hoist and hospital bed provided for her DH after he came out of hospital and the family turned a downstairs room into a bedroom.

When the carers came they said they hadn't been trained to use a hoist and there it remained, unused.

Germanshepherdsmum

Oh Caleo, you will make the OP feel terribly guilty by saying that. Looking after someone with dementia and delirium, even with carers visiting, is a huge and exhausting undertaking, especially if you are older as I expect the OP is. I sincerely hope she isn’t guilt-tripped into having her husband back home at the expense of her own wellbeing.

I agree, Continuing Healthcare funding, which icanhandthemback has confirmed her husband receives, is only available for the most dependent of patients, who need trained nursing care input on a very regular basis. As he is also immobile despite physiotherapy he would be very difficult indeed to look after at home, even if full time carers and nursing input was available, which would be a challenge to set up and maintain, leaving her potentially without support on some occasions. I think it’s really important to be realistic about what is possible, and to try to make sure the current care is improved whilst exploring other options.

Germanshepherdsmum

Oh Caleo, you will make the OP feel terribly guilty by saying that. Looking after someone with dementia and delirium, even with carers visiting, is a huge and exhausting undertaking, especially if you are older as I expect the OP is. I sincerely hope she isn’t guilt-tripped into having her husband back home at the expense of her own wellbeing.

Oh, it's not a practical suggestion.

A friend's DH has dementia and she is caring for him at home and has only just managed to arrange for carers to go in. She always has been in the caring profession herself but we could see the toll this is taking on her.

Oh Caleo, you will make the OP feel terribly guilty by saying that. Looking after someone with dementia and delirium, even with carers visiting, is a huge and exhausting undertaking, especially if you are older as I expect the OP is. I sincerely hope she isn’t guilt-tripped into having her husband back home at the expense of her own wellbeing.

You would be making him happier if you took him home. Whether or not you decide to do so depends on whether or not you can obtain and afford to pay for carers.

You would also need to pay for equipment such as a hoist, and suitable showering maybe a wet room. Talk it over with an occupational therapist'

My daughter in law obtained and supervised her mother's carers. She pays a higher wage than most other employers and got carers who are local, flexible. and were willing to learn how to use the hoist. The carers are now very reliable. There are attendance allowances which cover part of the expenses of a patient living at home.

A friend of mine, now deceased, had carers at home and was well satisfied until he needed a carer full time who would sleep in his home. At this point he chose to go to a residential home , as it would actually be less expensive than live-in carers. However he could afford to pay for the very best very expensive home, and had a capable friend , a senior nurse, who could keep an eye on the level of care he actually received there.

If you can afford a really top quality home, your husband may be content there. It's a great pity, but it's true that a lot of money does help with some problems

Notjustaprettyface

Hello icanhandthemback
No they are an ordinary care home and I did witness how the handling manager talked to him this afternoon and it certainly wasn’t good
I think if he says no to them they don’t try again but like I ve said I don’t think they try to ask anyway
What am I supposed to do ? I can’t be there all the time

If they are not meeting his needs, then that may be your leverage to get them to change his home. It is so important that the carers understand Dementia and it might be worth contacting Dementia UK to see if they can give you some advice.
It is that worry that you can't be there all the time that is so draining. That is exactly how we were until we got Mum into the home and there were times when we wondered whether having her home would be better even though we were on our knees when she went in to the old home. Now, as a family, we are happy to go at least every other day to see her.

It must be distressing for you to feel that the care home are not looking after your husband as well as they could be. But please don’t remove him and bring him home, even if he does keep asking!
It’s hard, but if your husband has no mobility and vascular dementia I’m sure it would be impossible for you to care for him at home. Please talk to the care home manager about how your husband is being cared for, alternatively talk to his social worker about another home if there is one which would suit better. Do not take on the responsibility of looking after him yourself at home, he is now in the care home for a reason.

Notjustaprettyface, are they a dedicated "Dementia" Home or are they just a home that accepts Dementia patients. I found it really does make a difference

Yes, This is very important.

Hello icanhandthemback
No they are an ordinary care home and I did witness how the handling manager talked to him this afternoon and it certainly wasn’t good
I think if he says no to them they don’t try again but like I ve said I don’t think they try to ask anyway
What am I supposed to do ? I can’t be there all the time

Have you spoken with your husbands Care Manager who will have been involved in the chc process. Did you get invited to attend the meeting when his care needs woukd have been discussed and care plan agreed? If not you might like to discuss this with the care manager.

Notjustaprettyface, are they a dedicated "Dementia" Home or are they just a home that accepts Dementia patients. I found it really does make a difference. The Dementia home she is in now are really on the ball about wording things different ways to get Mum up or coming back as often as they need to and asking again because 5 minutes after asking, she doesn't remember saying she didn't want to get up. One of the things they told her when she first went in and they realised that she was very reluctant to get out of bed was that they didn't allow eating in the room if it was being served in the dining room. Of course, if she is unwell or really reluctant, they don't force her but as a person who is used to doing as she's told by hospital staff, she complies. So different from the staff at the old home who did not have the level of experience to work with dementia patients in the same way.

Hello everyone and thank you so much for all your words of support / encouragement and wisdom
To answer some of your questions:
My husband went into the care home after a stay in hospital ; he went first into a ‘discharge to assess’ bed and the hospital discharge team chose this care home , I didn’t .
Then it became eventually permanent ; he is chc funded so we are not paying anything
But again , today , I had to have words with them as he was still in bed when I got there
They use a number of excuses so today they say he was really sleepy ; they also claim that he doesn’t want to get out of bed and doesn’t want to be hoisted but it simply isn’t true
He is fine when hoisted as I have witnessed more than once
It may be that he doesn’t answer them convincingly when they ask him if he wants to get out of bed but to be honest I am not even sure that they do ask him
It’s their word against his and they can always claim that he doesn’t remember etc because of his delirium/dementia
So I really don’t know what to do , it’s a nightmare

Cossy

Win

I too was an unpaid carer along with my younger daughter, for both my parents. The big difference is both of them had mental capacity and though disabled could still manage personal care and didn’t not need help getting around as used aids, walking frames and mobility vehicle and my mother just needed someone to help get in and out of her wheelchair and my car.

My MiL, on the other hand, had vascular dementia and decreasing mobility. We couldn’t have her in our own home due to no downstairs loo, and no room as children still at home and our dogs.

As a result my husband retired at 60, we struggled financially and lost money on his occupational pension as he took it early, he, along with carers in three times a day, was her primary carer. We didn’t full funding for all the carers time, my husband doesn’t drive and after almost five years of caring for her the stress brought on a serious heart attack bang in the middle of lockdown. He did survive, but on both SS and his GPS advice we then had to place her in residential care.

I strongly urge the OP to consider things very very carefully before making the enormous decision to take her husband gone. She doesn’t say how old she is herself, or him, and it’s a huge huge undertaking, even with carers help.

Cossy it is indeed a huge undertaking I fully agree, it takes over you life and everything else, both my late husband and late mother had vascular dementia, my husband had a massive stroke, so was totally paralysed, we used a hoist, a recliner and a wheelchair and had the bathroom slightly adapted. He never stayed in bed until the last 4 days of his life.I bought a car which had the seats removed so he could sit in the back in his wheelchair and went out every single day we possibly could weather permitted. . At the same time I had my mother who was blind and also in a wheelchair but she could at least transfer which was a great help. I had one carer to assist 3 times a day. I did nothing else but care and the housework everything else came 2nd. I have back issues so wore a brace when caring, but suffer now. I too gave up a good job so we lost 2 income overnight. Not easy but we did it and I would definitely do it again. I have just finished my 3rd round of caring, my late partner sadly died of cancer in October. No dementia this time, but just as hard to watch a loved deteriorate so fast with full capacity. Like others have said get your POAs in order without it you have little clout and you never know when you may need it, it can happen at a blink of the eye as it did with my husband.

I think you must ask yourself why he went into a home in the first place. Was it because it was becoming too much for you to care for him at home?
Remember, it will not become any easier as time passes.
Having a private carer looking after him at home, may entail having a person on duty for the day and another for the night shift. These care people need days off during the week, and their annual leave due. During those times you would have to arrange substitute care.
Without knowing your financial situation, I can tell that this will possibly be way more expensive than what you are presently paying for his board, lodging and care in the home.
Should you wish to visit your husband on a daily basis, you could perhaps arrange with the staff in the home to have your husband mobilised in a wheelchair or similar shortly before you arrive, give a precise time, like 10.30 or 11am, or in the afternoon.
Bear in mind, that the morning shift entails a lot of work, with assisting folk getting up and dressed, helping with the breakfast for those who need assistance. Once that is done, the staff usually have a bit of a breather.
If your husband can eat his breakfast without assistance, it may be possible to get him into a wheelchair in time for breakfast in the dining room.
You must also take time for yourself. Having your husband at home 24/7 can be very taxing. You need time for friends, a coffee here and there, hairdresser and other appointments. Do not forget that you too will need to have a week or so for a breakway or a holiday for yourself.
Ask your GP for guidance. Your GP, or the GP who works in the home, can advise the staff what a daily routine could look like.
I do know that there is a shortage of nursing and care staff, but the residents should not suffer because of that. You and your husband have a contract with the home.

Gundy

I have not had time to read every entry here but I do want to support what GermanSheperdsMum said in an earlier post - (this is my take) - to live into our senior years and NOT have a Power of Attorney set up for yourself and spouse is rather irresponsible.

This posters situation is exactly the dilemma you may find yourself in without a POA, and it could be a heartbreaking situation as personal care and concern is taken out of your hands - wife or not - in certain situations.

I worked in a hospital for 20 years and saw this play out all the time. It’s traumatic for a spouse because sometimes it’s too late to implement one. Just too late…

100% this

Who made the decision your DH should go into a care home and the specific one he is in. Someone must have had authority to make such decisions. Contact whoever was involved at that time to exoress your concerns. Also, there is a Care Commision for inspecting standards of care. Have you seen the latest Inspection Report for the home? There may be something in that highlighting lack of personal physical movement. Inspectorate would be interested.

My father had to go into a care home when his dementia worsened. When he asked to go home ,I told him he needed nursing and would go home when he was better. A small white lie but it reassured him. I was advised by the nursing staff to be in his reality and help him manage it rather than in mine. It was a wonderful place but yes you have to be on top of the staff as they are always overstretched. Being able to go in everyday will help you and your husband and in reality is the best place for him! Big hugs to you and hope it gets easier. Xxx

I have not had time to read every entry here but I do want to support what GermanSheperdsMum said in an earlier post - (this is my take) - to live into our senior years and NOT have a Power of Attorney set up for yourself and spouse is rather irresponsible.

This posters situation is exactly the dilemma you may find yourself in without a POA, and it could be a heartbreaking situation as personal care and concern is taken out of your hands - wife or not - in certain situations.

I worked in a hospital for 20 years and saw this play out all the time. It’s traumatic for a spouse because sometimes it’s too late to implement one. Just too late…

I do know and am full of admiration for care home staff.
My relative was kept clean, dressed and taken to the day room, apart from a couple of times when she was poorly, until the last week or so when she was too ill to be moved.

many severely disabled even bed-bound people live for years.
and have as much right to do so, and as fully as possible, as anyone else.
one cannot make assumptions.

My experience - with my father not OH - was that next of kin have no power without a Health Power of Attorney once the sick person has lost mental capacity. In my case the doctors were making decisions based on what they believed to be right for him despite me knowing it was not what he wanted. This is why I urge everyone to get P of As in place long before you expect them to be needed

Again, I don't want to be harsh, but loved ones often don't realise the amount of work it takes to get someone ship shaped, clean, cared for, and tidy each day.

That isn't at all excusing the home from doing whatever it takes, but, please don't be tempted to think that the average person would find it easy, and make the wrong decision.

He has got vascular dementia and delirium but feels well in himself
That would be very difficult to deal with at home.

He might just want to be left to rest quietly in bed. It's not as if he is recovering from an illness. If it were me, I would like to be kept sedated and comfortable and allowed to die in peace.

He may be nowhere near death's door. Being left in bed is not good unless he is in the final stages and too ill to move but Notjustaprettyface says he is well in himself.
It sounds as if the staff at the home are failing in their duty of care towards him.

It would be best to have a private meeting with the care home manager to express concerns, not just ask the staff.

Asking to go home is quite normal, someone close to me kept asking when she could go home, she'd had a lovely holiday, thank you. Just say "Perhaps another day" or "We'll have to see".