Temporary respite care home - how to address it?

[Mumof3kids]

Our family have been in a very similar position, my Mum had to go into emergency respite care as my Father had a heart attack. We did not feel she was ready to go into a care home and felt enormous guilt about placing her in care, we worried so much about how she would feel.
I packed her case when she was out of the house and we told her a little story about going away for a few days and then took her to the home. She loved looking around and joked about how she might stay there, we took advice and slipped out when she wasn’t looking. Easy to do, but the guild afterwards is dreadful. Mum did settle quite quickly although she asked all the time when would she be coming home. We quickly realised Dad could no longer go on looking after her, it was affecting his health and so we decided Mum should stay permanently. The home is fantastic and there is plenty of entertainment going on and we know that this is better than her sitting watching TV day and night as there is nothing else she can do apart from being taken out by other people. It gives us great peace of mind that she is being well cared for in the right environment and we know and accept she will not get better, so as and when things deteriorate she will receive the correct care. Dad can now focus on getting better.
For us the next battle is to try and get some funding from Social Services, I’ve called them to explain the situation, I’m really unsure what happens next and have been warned that they will try to avoid paying. I am constantly shocked at the lack of support carers receive for caring for Alzheimers suffers and it seems yet more is to come.
I visit Mum every day and enjoy my visits, the CH and staff are wonderful, however my mind is constantly thinking of her and hoping she is really ok, I hope in time this will get easier.

My goodness @Wishing20 our circumstances are very similiar indeed. I am sorry to hear of your dad's heart attack and that you poor mum has this evil disease. I really hope your dad makes a full lrecovery.

Thanks for sharing your situation, it really does help me to cope with our own situation. I really hope I can get to the same place that you are at regarding visits. This is the next big hurdle I need to overcome.

We visit my mum twice a day, yet I haven't seen my dad in over a week which adds to my guilt.

I wish your family well and that you get a positive outcome re funding.

Look after yourself.

x

 

[Roseleigh]

@Roseleigh yes that’s what I’m doing.

My mum is already worrying ‘about what people will think’. So I’m trying hard to convince her those who have anything other than support and understanding are not real friends.

Like someone said previously- no one wants to do this, the situation forces the decision.

And I’ve told mum to tell anyone that this was MY decision in the hope that helps her x

My mum , older than yours undoubtedly, is obsessed with what other people think on things like this. It comes from having grown up in communities where everyone knows each other and nobody thinks to mind their own business, ever. ? This kind of fear of the 'court of public opinion' is even more prevalent in many ethnic minority communities such as south Asian.

Mind you maybe it wasnt ALL bad, it helped to induce an expectation to 'do your duty' among those who would like to shirk it and is why so many Asians still often do look after their elderly at home. As our ancestors also did. Is this is a good thing or not? I don't know.

 

[Mumof3kids]

I contacted the Social Care team last week to extend my dad's respite (mum is still in hospital, heading into the 4th week) The First Response SW had handed us over to a local team so I spoke to a different SW who we have been allocated.

She hadn't actually read the notes but had seen she'd been assigned to us.

During our conversation I think i must have said something along the lines of it being really tough and although we know we've done the right thing, and there was nothing else we could do. That I know dad doesn't really want to be there but the situation had forced our decision and we were all heartbroken. I said that our family have discussed the future and that with mum's health she cannot continue to be dad's main carer 24/7 and that a Care Home for dad is sadly going to be permanent.

She asked whether we had LPA for Health. We don't, only the Financial one.

Her attitude changed and she started quoting Legislation and that my dad has Human Rights and he can't be held against his will. I COULD NOT BELIEVE WHAT I WAS HEARING. I felt like she thought I was evil and had just palmed him off for our convenience.

She asked whether we had had any external carers in place, to which I replied we hadn't, but prior to mum's admission into hospital my dad had been assessed by her colleague and were just about to get carers in for dad to help him shower and get dresssed, but this had been put on hold since dad was currently in respite.

She went on to say that a 'Judge' may take the view that a Care Home shouldn't be the first option and that we should demonstrate that we have tried looking after dad with carers.

'A Judge?'

The Care Home scenario isn't one that we ever thought we would need to consider, but sadly with my mum's health and her opening up about just how hard it was for her to cope we had no option but to put dad's care needs first to ensure he is safe and looked after.

The Care Home have told me the SW went into the Care Home on Friday to see dad. He got upset. Understandably as I can imagine this woman was very blunt and direct with dad. This makes me so angry.

Apparently an Advocate will be put in place to represent my dad's feelings (which we know are to go home) and that a 'Best Interests' meeting will be arranged.


I went to the Care Home today to drop some more clothes off and really really wanted to go and see him (I havent' visited since he moved in, i just haven't had the emotional strength). My husband went to see him. Dad didn't really make eye contact with him and just kept saying he needed to see mum. He got upset and my husband felt like he was causing him to get stressed. Dad said some nasty things to my husband, but that was always going to be the case.

So it's been a tough day and now I am in a state of anxiety at the thought of my family being accused of off loading my lovely dad to suit us.

Has anyone else been in this situation?

x

 

[Banjomansmate]

Last January my friend/partner, known on TP as The Banjoman, who lived alone , had been in hospital for a month with some form of infection. In December he had been found wandering outside (not for the first time) and had then been found on the floor in his bedroom, stuck behind the door. The following day it was obvious he had some form of infection and had been admitted to hospital. After several meetings with Social Services both before and after his admission to hospital it was finally agreed that he was no longer safe living alone and needed to go into residential care. I had LPA and as his major support I was fighting his case along with family who lived too far away to be much help apart from putting their oar in and causing me hassle.
We were all determined that he needed residential care, the medical team confirmed this and after a Best Interest Meeting even SS agreed (and we all know how difficult it is to get them to agree to that!). Great, all systems go - but No! The Banjoman didn’t want to go anywhere but back to his flat and even though I had a registered H&W LPA deeming he had lost capacity to make decisions, the hospital SS decided it was against his rights to be moved to a Care Home against his will even though there was no Care firm prepared to go and look after him if he returned to his flat as he had been getting stroppy with them.
It was decreed that he had to have an Independent Advocate to take his part and if necessary it would go before a Judge to decide what was best for him, which could take months. All this time he would be kept in a single room in the hospital as his dementia left him refusing to eat, wandering down corridors naked or falling over etc. etc.
Meanwhile two of his family members (the really helpful ones) and I investigated the Care Homes the LA were prepared to fund, chose one and after several “talks” with him eventually got him to agree to move into 24 hour care, however the Advocate still had to go and see him to make sure that he did agree to the move.
We were lucky that The Banjoman did eventually, albeit reluctantly, agree. The hospital Social worker, who tried really hard to get his agreement ( and it had to be recorded at least twice that he accepted the move) told me they had one gentleman who stayed in there for months while the legal process went through.
All this took the best part of six weeks to work through during which time his physical and mental health deteriorated.
This is all due to one of the Mental Health Acts and one can understand that there have to be safeguards but when all the health professionals say somebody needs to be looked after because they don’t have the capacity to care for their own self but aren’t allowed to do something about it because that person is allowed to make wrong decisions about their care it seems a bit ridiculous. Lawyers must make a fortune out of decisions like this.

 

[Sarasa]

Sorry for all the added hassle @Mumof3kids. It sounds like you are very much in the same situation as @Banjomansmate. I hope a best interest meeting confirms that your dad being in care is the best decision. It is certainly hassle you don't need, and I guess something that, if she gets to hear of it, will make your mum convinced she needs to carry on caring for your dad at home.
Mum was self funding, so I didn't involve SS in moving her into care. Mum was very, very cross and kept on trying to leave, so the home had to get a social worker and psychiatrist in to put a Deprivation of Liberty Safeguarding order (DoLS) in place. Mum was still pretty articulate and very clear she wanted to go home, which at the time she knew was the flat she'd just left. However they judged she didn't have the capacity to make informed decisions and granted the order. If she had taken herself off home, I was going to refuse to give her any help, as I knew a potentialy nasty crisis would happen quickly if I wasn't there to sort her out. That would be trickier for you as you have to consider your mum's needs too, but I hope things are resolved before it comes to that.

 

[Mumof3kids]

Sorry for all the added hassle @Mumof3kids. It sounds like you are very much in the same situation as @Banjomansmate. I hope a best interest meeting confirms that your dad being in care is the best decision. It is certainly hassle you don't need, and I guess something that, if she gets to hear of it, will make your mum convinced she needs to carry on caring for your dad at home.
Mum was self funding, so I didn't involve SS in moving her into care. Mum was very, very cross and kept on trying to leave, so the home had to get a social worker and psychiatrist in to put a Deprivation of Liberty Safeguarding order (DoLS) in place. Mum was still pretty articulate and very clear she wanted to go home, which at the time she knew was the flat she'd just left. However they judged she didn't have the capacity to make informed decisions and granted the order. If she had taken herself off home, I was going to refuse to give her any help, as I knew a potentialy nasty crisis would happen quickly if I wasn't there to sort her out. That would be trickier for you as you have to consider your mum's needs too, but I hope things are resolved before it comes to that.

Thank you @Banjomansmate and @Sarasa

@Sarasa we are self funding too. But was informed by the original SW that if we source a home via SS that the rates would be reduced. Hence going through SS rather than directly to a CH. But it sounds like by doing so that they now have some sort of authority on the decision.

The original SW (who helped find the CH) told me that since we didnt' have the LPA for Health and Welfare that the DoLS would be put in place. But once I mentioned to the second SW that this is likely to be a permanent situation to DoLs wasn't mentioned.

I haven't mentioned any of the above to my mum. She wouldn't be able to cope. She can barely handle the guilt she feels for dad being in the CH for respite so knowing this should be a permanent arrangement breaks her heart.

If she feels like she has to 'justify' this decision, will cause her stress and anxiety which she most certainly does not need given her health.

I am now full of dread as to what the coming days hold and how I will get through them without causing my dad and my mum upset and stress.

They will have been married for 54 years this week.

x

 

[canary]

You have a lot of things going on @Mumof3kids . but you dont have to worry about a DoLS. It is nothing to do with being self-funded or not, nor about whether anyone has POA.

It is simply a safeguarding thing for anyone who is not allowed out unaccompanied, and is pretty standard for most people with dementia who are in a care home and would be at risk if they went out by themselves.

 

[Mumof3kids]

You have a lot of things going on @Mumof3kids . but you dont have to worry about a DoLS. It is nothing to do with being self-funded or not, nor about whether anyone has POA.

It is simply a safeguarding thing for anyone who is not allowed out unaccompanied, and is pretty standard for most people with dementia who are in a care home and would be at risk if they went out by themselves.

Thanks for the explanation @canary. Like everyone on this forum, I have found myself thrust into a world I had previously no experience or knowledge of.

 

[Jaded'n'faded]

I went through something similar after I put mum in a CH. (Self funding.) An advocate was appointed because mum said she wanted to go home and I was not allowed to be her advocate because I wished her to stay. It was all very adversarial and - IMHO - completely unnecessary. I later found out that the advocate visited and asked mum a lot of leading questions like 'wouldn't you like to be in a nice flat of your own?' etc. (A carer I was friendly with told me this as she was shocked.)

Although it was apparent to everyone else mum needed 24 hour care, the SW insisted that because home was mentioned, that's what she had to go with. I pointed out mum thought she was on a cruise ship most of the time and would agree she wanted to live at the Ritz or on the Moon if you asked her but I got nowhere. Mum was still undiagnosed at that point so the SW eventually agreed she could stay at the CH until the next scan and/or diagnosis. That happened shortly after and I spoke to the consultant about the SW wanting mum out of the home. He was very surprised and said it was pointless as mum was only going to get worse. He said if I had further problems, to put the SW onto him and he'd speak to her. (He explained he could not overrule SS but it would look bad if they ignored his recommendations.)

As it turned out, that wasn't necessary as when the temporary DoLS ended and the SW came to see mum again, she got reports of mum's night time wandering and aggression, resistance to care, etc. I was there on that occasion and was delighted that mum talked to the SW about rice pudding for over an hour... ?

Like you, when this started I was extremely offended by the implication that I just wanted to stick my poor mama away in a home. But DoLS is about safeguarding the person, so if they say 'I want to go home' that's what the SW has to listen to. This stage of having no real capacity but being able to partly understand things is really difficult. The SW is just doing what she has to but it is mostly a tick box exercise. It's worth making notes so you can put your case, especially worth mentioning things like night agitation and wandering, because even if he had carers at home they would not be there overnight. Also insist your mum cannot possibly look after him and needs care herself.

 

[Baker17]

I went through something similar after I put mum in a CH. (Self funding.) An advocate was appointed because mum said she wanted to go home and I was not allowed to be her advocate because I wished her to stay. It was all very adversarial and - IMHO - completely unnecessary. I later found out that the advocate visited and asked mum a lot of leading questions like 'wouldn't you like to be in a nice flat of your own?' etc. (A carer I was friendly with told me this as she was shocked.)

Although it was apparent to everyone else mum needed 24 hour care, the SW insisted that because home was mentioned, that's what she had to go with. I pointed out mum thought she was on a cruise ship most of the time and would agree she wanted to live at the Ritz or on the Moon if you asked her but I got nowhere. Mum was still undiagnosed at that point so the SW eventually agreed she could stay at the CH until the next scan and/or diagnosis. That happened shortly after and I spoke to the consultant about the SW wanting mum out of the home. He was very surprised and said it was pointless as mum was only going to get worse. He said if I had further problems, to put the SW onto him and he'd speak to her. (He explained he could not overrule SS but it would look bad if they ignored his recommendations.)

As it turned out, that wasn't necessary as when the temporary DoLS ended and the SW came to see mum again, she got reports of mum's night time wandering and aggression, resistance to care, etc. I was there on that occasion and was delighted that mum talked to the SW about rice pudding for over an hour... ?

Like you, when this started I was extremely offended by the implication that I just wanted to stick my poor mama away in a home. But DoLS is about safeguarding the person, so if they say 'I want to go home' that's what the SW has to listen to. This stage of having no real capacity but being able to partly understand things is really difficult. The SW is just doing what she has to but it is mostly a tick box exercise. It's worth making notes so you can put your case, especially worth mentioning things like night agitation and wandering, because even if he had carers at home they would not be there overnight. Also insist your mum cannot possibly look after him and needs care herself.

Hi, I also had the same experience with an advocate appointed for my husband. Her attitude was disgusting, she asked him leading questions which led to a court case which I lost I might add and cost me tens of thousands of pounds trying to prove that it was in his best interests not to be moved from the home he was in. I had evidence from the professionals but this did no good. I will never forgive the judge for what he put my husband and myself through. When he gave his verdict he even had the temerity to say he could see my anger. I found out later that the judge had been censured twice because of remarks he had made to other families in court but I did not take this further because I was so ill mentally myself. Due to the judges decision my husband ending up moving twice because the home I had to place him decided after six months they couldn’t cope with himself, if the judge thought I was angry then he should see me now!!!