Dad wanting to live at home

[SERENA50]

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

 

[canary]

Im so sorry.
Who on earth decided that he has capacity to decide where he lives?

I would be inclined to be very clear about saying that you will not support him if he comes home. SWs tend to assume that any family nearby will automatically support a person with dementia, so you will have to tell them that you will not as you are too ill. It will make them think twice about him going home.

 

[Sarasa]

I think your dad has reached the stage where he won’t be happy wherever he is, but at the moment he thinks going home will solve his problems. I’d talk to the manager and see what they think about your dad and see if they can also feed that information back to SS. Don’t let the social worker and OT take any statements from your dad about how he can manage on his own at face value.
It does sound as though a care home is what he needs even if it is a long way from what he wants.

 

[SERENA50]

Im so sorry.
Who on earth decided that he has capacity to decide where he lives?

I would be inclined to be very clear about saying that you will not support him if he comes home. SWs tend to assume that any family nearby will automatically support a person with dementia, so you will have to tell them that you will not as you are too ill. It will make them think twice about him going home.

Hi

I don't know to be fair. I keep saying these things. We have already said we are not going to facilitate care ourselves, we can't anymore.

Dad had told the SW he could convert the utility into a wet room . I put pay to that straight away and said we had already had a horrific time with the upstairs bathroom and it was completely impractical if you knew the house lay out. I was really clear and said if that was an option going forwards and you say dad can decide these things then you as SS will have to sort it out because we will not be doing it. We see that the condition is progressive and the cost, dad doesn't have the money either. Dad might have been quite on the ball that day, I wasn't there so I cannot say what was said in the discussion.

 

[SkyeD]

Hi Serena50 - I don't have any 'wisdom' to offer, but am sending you a virtual hug. Your dad's care home sounds exactly the same as the one where my mum is - closed for a couple of weeks before Christmas (flu outbreak) and they're having Elvis today. My first thoughts, when I went to see mum, were that it was a bit tatty - but, same as you, I think the staff are lovely and I can't fault the care given (and the support given to me too).

My mum's only been there for three weeks. We had a needs assessment on Wednesday at the care home and agreed in principle that it's the best place for her to be - just waiting for my sibling to agree (that's another story for another time!)

My mum also thinks that she can cope at home - not a chance - she can't remember where she lives let alone how to do things such as using a washer, cooker, telephone etc. She has very poor mobility too. As for where her mind is at, let's just say that yesterday she thought that I was her mum.

It breaks my heart to see her so confused, but at least she's (now) calm, content and seems happy (as long as I distract her when she mentions going home).

Hope they enjoy Elvis
S x

 

[SERENA50]

I think your dad has reached the stage where he won’t be happy wherever he is, but at the moment he thinks going home will solve his problems. I’d talk to the manager and see what they think about your dad and see if they can also feed that information back to SS. Don’t let the social worker and OT take any statements from your dad about how he can manage on his own at face value.
It does sound as though a care home is what he needs even if it is a long way from what he wants.

You are totally right he thinks going home will be the answer. I put the social worker straight the other evening. I am pretty sure this is why they are doing this take dad to the house and see what's what. I think it is a horrific thing for him to go through and then have to leave the house and go back to the home but if he refuses to go back it will create a whole different situation.

The home do reports and things which will be fed back in and yes when I went yesterday he did not look 'out of place' he actually fitted in there.

We just get you don't understand , it is MY home and I want to be in MY home.

 

[SERENA50]

Hi Serena50 - I don't have any 'wisdom' to offer, but am sending you a virtual hug. Your dad's care home sounds exactly the same as the one where my mum is - closed for a couple of weeks before Christmas (flu outbreak) and they're having Elvis today. My first thoughts, when I went to see mum, were that it was a bit tatty - but, same as you, I think the staff are lovely and I can't fault the care given (and the support given to me too).

My mum's only been there for three weeks. We had a needs assessment on Wednesday at the care home and agreed in principle that it's the best place for her to be - just waiting for my sibling to agree (that's another story for another time!)

My mum also thinks that she can cope at home - not a chance - she can't remember where she lives let alone how to do things such as using a washer, cooker, telephone etc. She has very poor mobility too. As for where her mind is at, let's just say that yesterday she thought that I was her mum.

It breaks my heart to see her so confused, but at least she's (now) calm, content and seems happy (as long as I distract her when she mentions going home).

Hope they enjoy Elvis
S x

Thank you I appreciate a virtual hug this morning ❤️ Elvis lol must be a lot of demand for Elvis's this New Year. Things get complicated don't they? At least your mum is safe and warm and calm xx. No-one chooses these things but as I said to Dad when we found you and you had had nothing to eat or drink and you hadn't called for help, we had no idea how long you had been there for, how can we stand by and allow that to happen again? we really can't go on as we have been before dad, things have to change.

I am sure in Dad's mind he copes at home. He really doesn't. He told us yesterday he can do what he wants at home and clean his car. He can't even stand up without a walking frame and he hasn't cleaned his car for a good long time. He perhaps wishes he could as we all do but if he went home he is not going to be 'allowed' into his garage either as it isn't safe anymore. His fall happened whilst attempting to go to the toilet in there. He was told by the care lady NOT to go in there but he doesn't remember.

I appreciate your reply xx thank you xx

 

[Violet Jane]

These capacity assessments are a joke! Has your Dad also been found to have capacity to arrange for the utility room to be converted into a wet room? You need to ask that and say that you will absolutely not get involved with this in any way. SS will have to organise all of this including dealing with the inevitable anxiety that the works will cause your Dad. Tell them that you will not take calls from your father about the works or go round whilst the builders are at the house. I'm afraid that unless you step back SS will manipulate you into propping up a grossly inadequate care package.

In my view, once a PWD who lives alone is having falls and can't summon help then s/he needs 24-hour care.

 

[SkyeD]

I agree that a PWD who lives alone and can't summon help needs 24/7 care.

I found my mum on the floor in her bedroom, unable to move, frozen stiff, lying in wee, struggling to hold up a table lamp and with the cord wrapped around her neck (I think she'd reached up to try to get herself up but couldn't??) She's always been an early riser so by the time I arrived I estimated that she'd been like that for between 3 and 5 hours.

I'm looking forward to hearing what my sibling thinks (I can't get hold of said person!) - their partner is of the opinion that they think that mum can manage at home and that we'd look after her... sorry, but over my dead body. As an absentee sibling, I just know that it would all fall down to me, and I'm not prepared to do it because it wouldn't be in mum's (or my) best interests.

When the Social Worker originally rang me to make the appointment for the needs assessment, she said that she'd do a capacity assessment. When I said to her that, so far, five professionals had deemed that mum lacked capacity, the SW said that they have to do it every time because mental capacities can change. Magic wand anyone??

 

[Bod]

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

As I understand you. Dad has been in the Home about 4 weeks. That is not long for him to settle, not coming out of his room will make matters worse.
Would he come out to a activity that he would like, with you to accompany him?
Or just one meal.
What do the staff say about him, how does he act when you are not there, does he eat his meals?
Regarding the assessment and appointments, he will be quite capable of going into "Host" mode, where he will appear normal for a short while, you must be ready to let the cat out of the bag, and speak up when you see this happening. (You must be there with him.)
Forget any notion of him driving. IF he goes home, the car will NOT be there, you will have removed it.

Bod

 

[Jale]

It certainly seems to be the luck of the draw whether you get a "good" social worker who can see past the PWD host mode and will actually see the bigger picture. We were "lucky" with the social worker we had but I did ask to have a private conversation with her before she even saw mum. As for the OT, mum went into overdrive with him - he actually got her to go outside (it was the summer) and she sat outside saying how we never let her go outdoors. At that point the OT left us to it and it took 3 hours of me being hit and swore at, to get her back indoors. Up until the last couple of months she could tell such a tale of getting up, making breakfast, cleaning windows, washing, ironing etc and she sounds very convincing - the problem is she has been in a nursing home for 4 years and for the last 2 years has been bedbound and hasn't a clue as to where she is.
I agree with Violet Jane that once the regular falls start then it is time to be looking at a care/nursing home.

As sad as it is you will have to stand your ground with the SS/OT - try and make sure that you are there for the assessment and if needs be step in and speak up if needed.
Sending hugs - it's a horrible position to be in

 

[SAP]

When my mum was assessed for mental capacity, the deciding factor was that she would not be able to all for help if she needed it. By this time she could not use the phone and did not know her address. I’m not sure where your dad is on this but it’s worth thinking about. Also, and I don’t know the full story, if he had had several falls and can’t summon help then this would be an unsafe situation. Ask the social worker how many falls are too many and what they expect to happen if / when he falls again if he has already not been able to get help. If he was in hospital I would suggest that this would be an unsafe discharge, I’m sure the same language could be used now.
Stick to your guns about not stepping in, this would really make the situation very muddled and no good for any of you. I hope this gets resolved soon.

 

[Violet Jane]

I support an elderly friend and only after four falls and admissions to hospital in a six week period did the hospital SW decide that she needed 24 hour care. She would frequently tell SWs, OTs etc that if she fell she would crawl to the phone and ring someone. I had to say repeatedly that this had never happened and would never happen. She never used her pendant alarm either, either because she wasn't wearing it or it didn't occur to her to press it.

My husband and I arranged live-in care for the friend. Her relative was sceptical about it. I don't want to tempt fate but since she has had live-in care (for over a year now) she has not had a visit by the paramedics or an admission to hospital.

Lying on the floor for hours (the 'long lie') is dangerous. As well as the risks of pneumonia and becoming severely chilled there is the risk of kidney damage as the result of some kind of chemical reaction in the body.

 

[SERENA50]

These capacity assessments are a joke! Has your Dad also been found to have capacity to arrange for the utility room to be converted into a wet room? You need to ask that and say that you will absolutely not get involved with this in any way. SS will have to organise all of this including dealing with the inevitable anxiety that the works will cause your Dad. Tell them that you will not take calls from your father about the works or go round whilst the builders are at the house. I'm afraid that unless you step back SS will manipulate you into propping up a grossly inadequate care package.

In my view, once a PWD who lives alone is having falls and can't summon help then s/he needs 24-hour care.

Hello

Totally agree if someone forgets how to use a telecare button, cannot ring his daughters to let them know (my sister lives five mins away and me 40 mins aways) then how can they be safe? How can that same person then not remember the incident at all 24 hrs on but okay to decide on a major building project?

With the utility room it is almost clutching at straws. Dad doesn't have enough money for one thing and the other is that the sheer volume of work required would create so much stress for him. I think the SW was surprised that I said I am really sorry but we are not in any way facilitating that and as dad cannot even do quotes or his own finances it would fall on us and we will be ill with the stress of it ourselves, having already dealt with the upstairs bathroom and changing a bath to a shower.
💕S x

 

[SERENA50]

I agree that a PWD who lives alone and can't summon help needs 24/7 care.

I found my mum on the floor in her bedroom, unable to move, frozen stiff, lying in wee, struggling to hold up a table lamp and with the cord wrapped around her neck (I think she'd reached up to try to get herself up but couldn't??) She's always been an early riser so by the time I arrived I estimated that she'd been like that for between 3 and 5 hours.

I'm looking forward to hearing what my sibling thinks (I can't get hold of said person!) - their partner is of the opinion that they think that mum can manage at home and that we'd look after her... sorry, but over my dead body. As an absentee sibling, I just know that it would all fall down to me, and I'm not prepared to do it because it wouldn't be in mum's (or my) best interests.

When the Social Worker originally rang me to make the appointment for the needs assessment, she said that she'd do a capacity assessment. When I said to her that, so far, five professionals had deemed that mum lacked capacity, the SW said that they have to do it every time because mental capacities can change. Magic wand anyone??

Oh gosh that is awful. I have been told the same mental capacities can change depending on the decision? fluctuating capacity ? I don't get it myself.

My other sibling has said the same that Dad would be better in his own home and we could get some mats like in the care home that trigger an alarm. That alarm being sent to who? me and my sister? Since dad has also had a fall in the care home that he also cannot remember and needed a hoist it would not be something me at 5ft1nches and my sister at 5ft 4inches could lift a 6ft 2 inch man off the floor? My other sibling has moved down south this Christmas as well but his parting gesture was to agree with utility room stuff unbeknown to me until the SW rang. I have told my sibling that he is welcome to take it on but we would not. He wasn't happy with that. The same sibling was visiting over xmas as we could not and today I find out he had noticed dad's swollen ankles before Christmas and not said to the home about them, it took my visit yesterday to say and make sure that someone made sure his legs were elevated. I was very cross and I hate the thought of falling out but unavoidable sometimes.

💕 S

 

[SERENA50]

As I understand you. Dad has been in the Home about 4 weeks. That is not long for him to settle, not coming out of his room will make matters worse.
Would he come out to a activity that he would like, with you to accompany him?
Or just one meal.
What do the staff say about him, how does he act when you are not there, does he eat his meals?
Regarding the assessment and appointments, he will be quite capable of going into "Host" mode, where he will appear normal for a short while, you must be ready to let the cat out of the bag, and speak up when you see this happening. (You must be there with him.)
Forget any notion of him driving. IF he goes home, the car will NOT be there, you will have removed it.

Bod

Hello

mmm the staff said we could book for lunch with dad if we ring two days before. We plan to go for Sunday lunch next week and hope that Dad will go in the dining room with us . Four weeks is not long but with his goal being home, home, home he won't give this a chance at the moment.

My sister rang and they said Dad had been in the shower (we asked yesterday to make sure he had one) they had elevated his legs, he was much happier and smiling today.

I won't let him drive no chance.

You are right about hostess mode saw it a few times and once with a nice chap from OT. Dad was so speedy around the house I wondered if there had been a clone. He promised to do all the exercises which of course he never did. He filed the fact sheets away and never remembered what the exercises were or why he should do them.

💕S x

 

[SERENA50]

It certainly seems to be the luck of the draw whether you get a "good" social worker who can see past the PWD host mode and will actually see the bigger picture. We were "lucky" with the social worker we had but I did ask to have a private conversation with her before she even saw mum. As for the OT, mum went into overdrive with him - he actually got her to go outside (it was the summer) and she sat outside saying how we never let her go outdoors. At that point the OT left us to it and it took 3 hours of me being hit and swore at, to get her back indoors. Up until the last couple of months she could tell such a tale of getting up, making breakfast, cleaning windows, washing, ironing etc and she sounds very convincing - the problem is she has been in a nursing home for 4 years and for the last 2 years has been bedbound and hasn't a clue as to where she is.
I agree with Violet Jane that once the regular falls start then it is time to be looking at a care/nursing home.

As sad as it is you will have to stand your ground with the SS/OT - try and make sure that you are there for the assessment and if needs be step in and speak up if needed.
Sending hugs - it's a horrible position to be in

thank you xx

It is sad you have to battle away.

Dad was the same in some appointments. He still tells people he can make his own meals. I said to the SW if you count sticking biscuits in your pockets because you choose to use two walking sticks which you have been told are not suitable then yes he can make his own meal. He stopped taking meals out of the freezer during the last six months, he had no idea of what to choose, if he had eaten or not he couldn't tell you, same with drinking and we discovered he had been having wetting incidents.

I will update my notepad with the most recent things for when we meet the new social worker at the home , myself and my sister.

💕 S x

 

[SERENA50]

When my mum was assessed for mental capacity, the deciding factor was that she would not be able to all for help if she needed it. By this time she could not use the phone and did not know her address. I’m not sure where your dad is on this but it’s worth thinking about. Also, and I don’t know the full story, if he had had several falls and can’t summon help then this would be an unsafe situation. Ask the social worker how many falls are too many and what they expect to happen if / when he falls again if he has already not been able to get help. If he was in hospital I would suggest that this would be an unsafe discharge, I’m sure the same language could be used now.
Stick to your guns about not stepping in, this would really make the situation very muddled and no good for any of you. I hope this gets resolved soon.

Hello

I know how many falls are too many? I shall make a note to ask her that. He has had one recent fall which resulted in the current situation as he couldn't call for help, he has had one fall in the care home since resulting in the hoist being used. He had one fall outside bringing the bin in and a passer-by found him and he got back to the house and there will be others but he can't remember them but logically we know there must have been others these are the ones we know of.

We used the words unsafe discharge after his first admittance to hospital in September, they were supposed to assess him, it never happened and they didn't listen or want to listen, deemed medically fit and he was sent home. He fell the next night but my brother was stopping over so he picked him up. The second hospital appointment was an elective procedure to investigate NPH but after the procedure he could not stand and it took about three weeks to recover, during which time we fought the hospital , I use those words as that is what it was, to insist on social care before he came home. In the end what was put in place when he came home turned out to be totally unsuitable (reenablement !) and the care from the hospital hub said so. He then had the incident of falling and not calling for help which led to this.

Dad was bed blocking and they did everything they could to send him home and we did everything we could to stop it without social care in place. Could not have done anymore.

💕 S x

 

[SERENA50]

I support an elderly friend and only after four falls and admissions to hospital in a six week period did the hospital SW decide that she needed 24 hour care. She would frequently tell SWs, OTs etc that if she fell she would crawl to the phone and ring someone. I had to say repeatedly that this had never happened and would never happen. She never used her pendant alarm either, either because she wasn't wearing it or it didn't occur to her to press it.

My husband and I arranged live-in care for the friend. Her relative was sceptical about it. I don't want to tempt fate but since she has had live-in care (for over a year now) she has not had a visit by the paramedics or an admission to hospital.

Lying on the floor for hours (the 'long lie') is dangerous. As well as the risks of pneumonia and becoming severely chilled there is the risk of kidney damage as the result of some kind of chemical reaction in the body.

Hi

Dad said the same sort of thing well I was in the building trade so you just get up don't you. In his case he told me he had lain on his back and pushed himself along no idea how he did that or how long that took to get from a tiled kitchen floor through a hall way and carpeted lounge and then pull yourself up into a chair. He had the watch thing on his wrist said he didn't know how to press it, could not remember.

My grandma many years ago died from being on the floor for many hours. My grandad didn't phone for help but instead covered her and himself with a blanket and lay down beside her until my mum came round, she passed away from hyperthermia sadly. The dangers are very real.

💕

 

[Violet Jane]

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'.