Dad wanting to live at home

[SERENA50]

In my friend's case I strongly suspect that the hospital clinicians had something to do with the decision. As well as the admissions there were other paramedic visits (following falls) which did not lead to my friend going hospital. I was on holiday at the time and so I don't know the exact position but I think that my friend had four or more falls in a single week before her last admission to hospital.

Care homes can't prevent all falls but they will know or have some idea about what happened and there won't be the risk of a 'long lie'.

Hello

Yes the risk is there always wherever someone is. In the home there is a mat on the floor which is highly sensitive as well as a call bell system. Dad didn't need to do anything as the alarm was triggered when he fell down so as you say someone was straight there and the 'long lie' did not happen. The risk in my personal view is higher at home for dad living alone, four calls a day each of what 30 mins duration and then over night? The cost of 'live in' care I cannot begin to imagine however we may have to investigate that I guess if the coming home thing is likely. Four and more falls for your friend sounds horrific xx

 

[JanBWiltshire]

Sadly, they are of the generation for whom a care hime scenario has been seen as the worst kind of evil. Neither of my parents wanted to go into a care home but when they weren’t able to be at home, they went in and all I can say is, it is the best decision ever made.

The alternative was fire fighting problems and waiting for another crisis. Their needs outweighed their wants in the end. Over the past 8 months in the care hom, my father needed more and more assistance and he passed away a few days ago. Never have I been more certain of him being in the right place as he was surrounded by people he had grown close to and who loved him. Familiarity actually ended up being his safety and security.

I think what helped me was this “needs over wants” mindset and also I thought I wouldn’t ask a three year old what was best for them as a three year old doesn’t have the reasoning skills - it is exactly the same with the elderly with sinility or dementia.

Hope this helps and I really feel your pain. It is so hard have to make tough decisions. If you make them for the right reasons, you can never regret it. Sending a great big hug, x

 

[Sarasa]

If social services will be paying for your dad's care they won't usually consider a live-in carer, but try the four carers a day first. If your dad will be self funding I'd suggest they assess if your dad has capacity to make decisions about where he lives first.
I moved mum into care when she was probably at a less advanced stage than your dad. My main concern was that she was getting into rows with the neighbours over various things, specially that they were stealing from her, and also going out drinking with random men in her local pub. Mum had forgotten she was in her nineties and was thinking of herself as a flirtatious young woman.
Mum also didn't want to be in a care home and wanted to do back home. The home applied for a Deprivation of Liberty Safeguards order. I was worried that they would find mum did have capacity as she sounded very together if you spoke to her in small bursts. However the social worker and psychiatrist decided that being in care was best for her. I breathed a huge sigh of relief as I thought she'd end up causing harm to herself or someone else if she'd stayed at home.

 

[Jaded'n'faded]

@SERENA50 It's all very well the SW saying he has capacity to decide where he lives but this is being used over other, more important things. The key thing is: does he have capacity to understand his care needs? The answer is clearly no, so this is the part you need to emphasise to the SW.

When a person really can't understand that they need help with anything (or won't accept it) then those around them must act in their best interests to keep them safely looked after. This aspect of 'having capacity' overrides how he feels about where he lives so you need to keep reminding the SW of that. So just keep repeating that going home would not be in his Best Interests.

Like Sarasa, I had similar issues with the DoLS social worker who tried to tell me mum would be fine in some sort of sheltered housing. I totally disagreed but mum had only recently had a major crisis, was undiagnosed and presented extremely well (great hostess!) Pressure was also put on me to look after her - I said no. In fact I told the SW that if she wanted to find housing for my mother she could do it herself as I strongly disagreed. I got up to leave, told her if anything - anything untoward happened to mum I would hold her personally responsible as I was washing my hands of the whole situation. Told her I simply couldn't go along with her ridiculous suggestions that mum could manage when clearly she had no insight whatsoever. She asked me where mum had lived previously (actually nearly 2 hours away as I'd moved her into a care home near me) so I told her she'd have to ask mum (who I knew didn't have a clue) where she lived. Even then she was still banging on about how that wasn't important and that if mum wanted to live elsewhere she should be allowed to. It was a real battle but when she realised I really would leave them to it, she eventually backed down.

 

[Violet Jane]

@SERENA50, is your Dad self-funding? If he is, then you could consider live-in care. It's not a cheap option though. Depending on a number of factors it may be more or less expensive than a care home. I know something about it having arranged it for my friend. I'm happy to answer any questions that you have about it if it's something that you're considering. I will say that live-in care still requires quite a lot of input from you.

 

[SERENA50]

@SERENA50 It's all very well the SW saying he has capacity to decide where he lives but this is being used over other, more important things. The key thing is: does he have capacity to understand his care needs? The answer is clearly no, so this is the part you need to emphasise to the SW.

When a person really can't understand that they need help with anything (or won't accept it) then those around them must act in their best interests to keep them safely looked after. This aspect of 'having capacity' overrides how he feels about where he lives so you need to keep reminding the SW of that. So just keep repeating that going home would not be in his Best Interests.

Like Sarasa, I had similar issues with the DoLS social worker who tried to tell me mum would be fine in some sort of sheltered housing. I totally disagreed but mum had only recently had a major crisis, was undiagnosed and presented extremely well (great hostess!) Pressure was also put on me to look after her - I said no. In fact I told the SW that if she wanted to find housing for my mother she could do it herself as I strongly disagreed. I got up to leave, told her if anything - anything untoward happened to mum I would hold her personally responsible as I was washing my hands of the whole situation. Told her I simply couldn't go along with her ridiculous suggestions that mum could manage when clearly she had no insight whatsoever. She asked me where mum had lived previously (actually nearly 2 hours away as I'd moved her into a care home near me) so I told her she'd have to ask mum (who I knew didn't have a clue) where she lived. Even then she was still banging on about how that wasn't important and that if mum wanted to live elsewhere she should be allowed to. It was a real battle but when she realised I really would leave them to it, she eventually backed down.

Hello

mmmm Yes I agree. That is the reason that I said about the utility room that is absolutely not happening facilitated by myself or my sister. It is a battle for sure.

 

[SERENA50]

@SERENA50, is your Dad self-funding? If he is, then you could consider live-in care. It's not a cheap option though. Depending on a number of factors it may be more or less expensive than a care home. I know something about it having arranged it for my friend. I'm happy to answer any questions that you have about it if it's something that you're considering. I will say that live-in care still requires quite a lot of input from you.

Hello

He is and no we don't really think of that as an option just at the minute.

 

[SERENA50]

Sadly, they are of the generation for whom a care hime scenario has been seen as the worst kind of evil. Neither of my parents wanted to go into a care home but when they weren’t able to be at home, they went in and all I can say is, it is the best decision ever made.

The alternative was fire fighting problems and waiting for another crisis. Their needs outweighed their wants in the end. Over the past 8 months in the care hom, my father needed more and more assistance and he passed away a few days ago. Never have I been more certain of him being in the right place as he was surrounded by people he had grown close to and who loved him. Familiarity actually ended up being his safety and security.

I think what helped me was this “needs over wants” mindset and also I thought I wouldn’t ask a three year old what was best for them as a three year old doesn’t have the reasoning skills - it is exactly the same with the elderly with sinility or dementia.

Hope this helps and I really feel your pain. It is so hard have to make tough decisions. If you make them for the right reasons, you can never regret it. Sending a great big hug, x

Hello

I have been over today and after our chat the other day low and behold there was dad sitting having his lunch in the dining room. He was emotional but he had actually gone and sat for his lunch in the dining area.

Me and my sister know the fire fighting situation would continue if he was to come home and it is definitely the wants over needs. I struggle with this capacity stuff I must admit. See what happens with the appointments this coming week hoping for some sort of diagnosis.

 

[BrynX]

Hello, I get the impression that for most contributors the Social Services (SS, what is OT?) are really keen to stop a person with dementia from going into a care home, and wish to return them if at all possible to a family home. I have the opposite problem, I don't know how usual it is. My story is, that my wife has dementia and has been in a care home for 18 months on section 117 funding. She wishes very strongly to return home, and I also wish to have her home for mutual companionship. The Local Authority (LA) are very keen to keep my wife in the care home, so much so that they initiated a hearing at the court of protection, to test the LA's position against my request to bring my wife home for a trial period of 4 weeks with the LA to decide the outcome of the trial. At the hearing the judge took the LA's position and ordered that my wife should stay in the care home permanently. I am my wife's Relevant Person Representative (RPR) and my duty is to take some action on my wife's strong wishes. I am having difficulty finding a solicitor to mount a section 21a challenge against my wife's deprivation of liberty, as they are either too busy or question what has changed since the last hearing to make a challenge viable. My wife is fluent of speech and can send an email, but her short term memory is very poor. She is continent and can look after herself so will not be a problem at home. She does have bouts of aggressive behaviour which was the reason for her entry to the care home in the first place, but she has quietened down quite a bit and I am confident of caring for her. She is 81 and I am (almost) 85. I would welcome any advice on my situation.
BrynX

 

[Bod]

Hello, I get the impression that for most contributors the Social Services (SS, what is OT?) are really keen to stop a person with dementia from going into a care home, and wish to return them if at all possible to a family home. I have the opposite problem, I don't know how usual it is. My story is, that my wife has dementia and has been in a care home for 18 months on section 117 funding. She wishes very strongly to return home, and I also wish to have her home for mutual companionship. The Local Authority (LA) are very keen to keep my wife in the care home, so much so that they initiated a hearing at the court of protection, to test the LA's position against my request to bring my wife home for a trial period of 4 weeks with the LA to decide the outcome of the trial. At the hearing the judge took the LA's position and ordered that my wife should stay in the care home permanently. I am my wife's Relevant Person Representative (RPR) and my duty is to take some action on my wife's strong wishes. I am having difficulty finding a solicitor to mount a section 21a challenge against my wife's deprivation of liberty, as they are either too busy or question what has changed since the last hearing to make a challenge viable. My wife is fluent of speech and can send an email, but her short term memory is very poor. She is continent and can look after herself so will not be a problem at home. She does have bouts of aggressive behaviour which was the reason for her entry to the care home in the first place, but she has quietened down quite a bit and I am confident of caring for her. She is 81 and I am (almost) 85. I would welcome any advice on my situation.
BrynX

Could you deal with an aggressive outburst at 3 in the morning?
After one just before midnight…
Questions to be asked of you, only you can answer.

Bod

 

[Sarasa]

Tough though it is @BrynX , I would really think twice about trying to get your life home. At the moment she has a team to care for her and keep her calm. At home, even if you have people coming in to give you a break or to help her showering etc there will be times when you are on your own. You may also discover that when she is home with you she still wants to be somewhere else, as that seems to be the nature of dementia, the idea that if the person with dementia was elsewhere things would be better and they would have left their confusion behind. Also dementia is a progressive illness, and if after a few months you could no longer cope you'd be starting the process to find her a suitable care home all over again.
It is probably best if you say you agree with her and you are working on getting her home, but just keep on kicking the idea down the road. In the meantime enjoy the time you have. Can you take her out to visit a garden centre or to go for a bit of shopping for instance?
Sorry that that isn't what you wanted to hear.

 

[SERENA50]

Hello, I get the impression that for most contributors the Social Services (SS, what is OT?) are really keen to stop a person with dementia from going into a care home, and wish to return them if at all possible to a family home. I have the opposite problem, I don't know how usual it is. My story is, that my wife has dementia and has been in a care home for 18 months on section 117 funding. She wishes very strongly to return home, and I also wish to have her home for mutual companionship. The Local Authority (LA) are very keen to keep my wife in the care home, so much so that they initiated a hearing at the court of protection, to test the LA's position against my request to bring my wife home for a trial period of 4 weeks with the LA to decide the outcome of the trial. At the hearing the judge took the LA's position and ordered that my wife should stay in the care home permanently. I am my wife's Relevant Person Representative (RPR) and my duty is to take some action on my wife's strong wishes. I am having difficulty finding a solicitor to mount a section 21a challenge against my wife's deprivation of liberty, as they are either too busy or question what has changed since the last hearing to make a challenge viable. My wife is fluent of speech and can send an email, but her short term memory is very poor. She is continent and can look after herself so will not be a problem at home. She does have bouts of aggressive behaviour which was the reason for her entry to the care home in the first place, but she has quietened down quite a bit and I am confident of caring for her. She is 81 and I am (almost) 85. I would welcome any advice on my situation.
BrynX

Hello

In an ideal world then yes the best place for anyone would be in their home, with all their things around them in a place that feels still like it's okay. I am imagining if my dad and mum were in a similar position or my in laws and the devotion and love they had and have for each other too and how it must be to be apart ❤️ me and my husband too. You probably miss her company an awful lot and when she says she wants to come home and you also feel you want that too it must be very hard, it doesn't mean it is the right choice though.

Your wife has been in a care home for over a year now and the situation that led here to be there is still here - dementia. My dad strongly wishes every day to come home. Next week we have a meeting and I will sadly be saying that my own father cannot come back to his own home and give reasons why. My heart says scoop him up, take him home, he's fine, we will manage but my head says come on you know we can't cope, it isn't the right thing to do....

I worry for you if your wife did come home it would go back to where you are before and what led your wife to go to a home and how exhausting it must be for you to try and facilitate legal type proceedings in advancing years when you should be enjoying simpler things like perhaps taking your wife out or visiting, sharing meals with her, maybe even volunteering in the home perhaps and getting more involved in that way if it is possible to do so. I am hoping you have friends and family to support you too .

 

[Kimm]

Hello

We have been ill all Christmas . In fact still recovering from a really harsh bout of covid. I think we all got so run down with the last few months the year it picked us out quite easily.

The care home was closed to visitors for two weeks and yesterday was the first time I have been able to see Dad since beginning of December. He has a chest infection, still won't come out of his room. He was low and tearful. Cannot understand why he can't just go home. He has no memory of the events that led him there. SS are keen to assess him in the home with an OT (we have had multiple times at this sort of thing which I pointed out to SS).

If he goes home there is a possibility of him saying he won't go back and a duty SW would be called then. My thoughts are this tired, vulnerable old chap who we love and have cared for , five years or more is going to be put through the process of going to his house to show what he can do and can't do, for strangers to pick over his home to see if he can go back with four carers popping in during the day, maybe the night because he has capacity to decide and he continually says he doesn't belong in the home and he wants to go home.

I know its his choice and I know all the ins and outs of the processes. No place is perfect , home isn't and perhaps no care home is. He's tired and we are tired. I know he could fall anywhere at anytime wherever he was. All I could do was hold his hand and hug him and when he tells me it's never ending , that it will end it really will, nothing goes on forever. I can't cry, someone has to stay strong and calm but I really want to cry about it all.

The care home staff are lovely, I cannot fault the care. The home is a bit scrappy round the edges but its clean. They have Elvis on today as a tribute act and they do activities and things with the residents. It is a home I know so I know it isn't like someones own home, I get that.

It is just that Dad wants to be in his own house where he sits on his own all day, all night. He won't be able to get to his bathroom, commodes all the way, can't get to a shower so goodness knows what their suggestion would be there. He has forgotten we found him after his fall sitting in his chair not having eaten or had a drink , didn't ring us for help, couldn't work out how to press his telecare.

They offered him another room in the care home in the non dementia side but he felt unsafe as there was a lift and his mobility is really poor. He won't go into the other areas of the home because he doesn't see anything is wrong with himself and he also doesn't want to see other people with dementia either.

What is planned is that the assessment will go ahead, two appointments this week for memory clinic and hospital with the neurology to discuss his test results and somehow I have to try and get the chaps view on Dad driving because he will be insisting he can drive if he went home. Then once those reports are in the new social worker, yet to be appointed, will meet with us at the home and a decision will have to be made.

Not sure if my post has a purpose other than a huge sigh x

Hello there,

Hello

We have been ill all Christmas . In fact still recovering from a really harsh bout of covid. I think we all got so run down with the last few months the year it picked us out quite easily.

The care home was closed to visitors for two weeks and yesterday was the first time I have been able to see Dad since beginning of December. He has a chest infection, still won't come out of his room. He was low and tearful. Cannot understand why he can't just go home. He has no memory of the events that led him there. SS are keen to assess him in the home with an OT (we have had multiple times at this sort of thing which I pointed out to SS).

If he goes home there is a possibility of him saying he won't go back and a duty SW would be called then. My thoughts are this tired, vulnerable old chap who we love and have cared for , five years or more is going to be put through the process of going to his house to show what he can do and can't do, for strangers to pick over his home to see if he can go back with four carers popping in during the day, maybe the night because he has capacity to decide and he continually says he doesn't belong in the home and he wants to go home.

I know its his choice and I know all the ins and outs of the processes. No place is perfect , home isn't and perhaps no care home is. He's tired and we are tired. I know he could fall anywhere at anytime wherever he was. All I could do was hold his hand and hug him and when he tells me it's never ending , that it will end it really will, nothing goes on forever. I can't cry, someone has to stay strong and calm but I really want to cry about it all.

The care home staff are lovely, I cannot fault the care. The home is a bit scrappy round the edges but its clean. They have Elvis on today as a tribute act and they do activities and things with the residents. It is a home I know so I know it isn't like someones own home, I get that.

It is just that Dad wants to be in his own house where he sits on his own all day, all night. He won't be able to get to his bathroom, commodes all the way, can't get to a shower so goodness knows what their suggestion would be there. He has forgotten we found him after his fall sitting in his chair not having eaten or had a drink , didn't ring us for help, couldn't work out how to press his telecare.

They offered him another room in the care home in the non dementia side but he felt unsafe as there was a lift and his mobility is really poor. He won't go into the other areas of the home because he doesn't see anything is wrong with himself and he also doesn't want to see other people with dementia either.

What is planned is that the assessment will go ahead, two appointments this week for memory clinic and hospital with the neurology to discuss his test results and somehow I have to try and get the chaps view on Dad driving because he will be insisting he can drive if he went home. Then once those reports are in the new social worker, yet to be appointed, will meet with us at the home and a decision will have to be made.

Not sure if my post has a purpose other than a huge sigh x

Hello there, sounds like you're having a time of it. You must stick to your guns despite yourself. It's heartbreaking to feel like you're denying a loved one what they think they want and they can get more insistent about it, too. But the risk of neglect here seems huge. I would highly recommend keeping a record of all comms with the various bodies, ie Soc Svcs, dates et al and make a note of the facts, eg PWD has v poor mobility, has had x amount of falls, number of times in hospital or ambulance called, unable to feed self, etc etc. Trust me, this will help the external organisations as well as you and I think it eases your mind a bit like journalling can. Agree, must not drive. DVLC notified of any diagnosis? Probably no decision will seem the right one but you must go with your gut feeling and stick with this. Even now, I wonder if I did the right thing with my mum but I know I really had no other choice. Look after yourself x

 

[SERENA50]

Hello there,

Hello there, sounds like you're having a time of it. You must stick to your guns despite yourself. It's heartbreaking to feel like you're denying a loved one what they think they want and they can get more insistent about it, too. But the risk of neglect here seems huge. I would highly recommend keeping a record of all comms with the various bodies, ie Soc Svcs, dates et al and make a note of the facts, eg PWD has v poor mobility, has had x amount of falls, number of times in hospital or ambulance called, unable to feed self, etc etc. Trust me, this will help the external organisations as well as you and I think it eases your mind a bit like journalling can. Agree, must not drive. DVLC notified of any diagnosis? Probably no decision will seem the right one but you must go with your gut feeling and stick with this. Even now, I wonder if I did the right thing with my mum but I know I really had no other choice. Look after yourself x

❤️ Thank you for your kind words. We keep records yes. He went to the memory clinic yesterday and was told by the lady that he should not drive. Still no diagnosis and by the afternoon when I spoke to him he had forgotten that conversation so we have asked for it in writing too because he won't believe us at a later stage. We now have a best interests meeting this week. I don't think it will go well.

 

[JanBWiltshire]

Brynx….. I really feel for you and your wife in this awful situation. a Deprivation of Liberty order is not taken lightly and I imagine your wife has been put on medication to help ease the aggression.

My elderly parents lived at home together, well beyond the stage that it was truly viable without help. My issue was that neither could see the difficulties and their need for some kind of help; one was impacting on the other - the reality was they couldn’t truly look after each other as they once had.

Dementia, because it is progressive has to be seen as the longer term problem.

Do you have family who can help you to see the way forward? My father joined my mother in the care home, after six months apart as he missed her so much and it worked very well - my mother’s needs really were too great for her to return home.