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Refusing to go to respite care

JHA

Registered User
Aug 7, 2021
629
0
Ive had similar issues with my Mother , Social Services were far from helpfull they only considered things from a local authority financial angle , Psychiatric nurse tested Mum and she scored 8/30 and told us this indicated mid to late stage Dementia , And said Mum wasnt capable of making any big decisions about her own future as she didnt have capacity , We had started asking Mum to consider going in a care home at this point as we had supported her on a daily basis for 3 yrs and even with the hrlp of 3 carers a day we still couldnt cover all possibilities especially at night , In the end Mum got another of her many chest infections which led to a AE visit then admission to hospital , I found the only way was to refuse to bring Mum back home as we simply couldnt cope anymore, Aftrr a 2 week stand off eventually Social Services got involved to help free up the bed , They moved mum to a local care home temporarily for 3 weeks then later agreed to another 3 months temp stay , Since Mums been in the Care Home i would say shes had better care than we could provide and seems happier there.
My mom is not happy or settled in the care home yet - she wants to go home but I know it cannot happen. Last weekend she was very unsettled and on the Sunday did attempt to break out. The Mental Health Consultant altered her meds on Monday and all seemed ok until Wednesday night when she had a temperature and raised pulse - GP sent her to hospital to be checked out. Hospital gave precautionary antibiotics for a UTI and as far as I am aware did nothing else prior to discharge back to the care home. Early hours of this morning the care home rung to say that my mom was being taken back to the hospital as she was extremely sleepy and not talking whilst sitting in a chair. Spent most of this morning trying to find her at the hospital - in the end the hospital phoned me thinking I was the previous care home that she was in early last year! That is the 3rd time the hospital has done that and yet again I put them straight. They are now carrying out blood and water tests to find out if something is going on.

I can guarantee when they have ensured that she is medically fit someone in their wisdom will say she can go home - not a chance I should never have allowed Social Services to persuade me to let this happen in September as we are literally back to where we started and it is my mom that is suffering all this upheaval. Social Services will not have to fund a care home so I do not see why they keep insisting home is the best place. Sorry for rambling.
 

Violet Jane

Registered User
Aug 23, 2021
797
0
It will be more difficult for SS to discharge your mother home this time as you will not be supporting this. In reality, care visits are not enough for a person with dementia beyond a certain point. It is January, which is different from September. It gets dark early and the house will be cold and uninviting. There will be no food in the house. Nobody will be visiting or ringing your mother to provide company and social support. It will be very hard to do but you need to hold firm. If SS get the slightest idea that you will support your mother in any way they will allow her to go home confident that you will fill in the gaps / pick up the pieces. Nothing has changed for the better since September or December and you know that you cannot support your mother at home because you have done this and you were brought to breaking point.

Do not allow SS or anyone else to make you feel guilty. You son needs you and deserves a mother who is not broken by other caring responsibilities. Your mother has had a long life and there are other people who can look after her. Your son is young and has got his whole life ahead of him but he needs support to fulfil his potential.
 

canary

Registered User
Feb 25, 2014
18,222
0
South coast
This time it should be different as your mum was admitted from a care home.
Make sure that the hospital is aware that she was not living at home before she was admitted.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,747
0
Nottinghamshire
Sorry your mum is in hospital @JHA, what a worry. Make sure that they know she was admitted from the care home and that is where she is to return to when they've sorted her out. I hope you are worrying unnecessarily but are social services clear that both the home and the consultant say she no longer has capacity to decide where she should live
 

JHA

Registered User
Aug 7, 2021
629
0
This time it should be different as your mum was admitted from a care home.
Make sure that the hospital is aware that she was not living at home before she was admitted.

I have told them four times in the last three days that she was admitted from a care home - sadly they had the wrong care home recorded and were actually ringing my mobile as the number for the wrong care home.
 

JHA

Registered User
Aug 7, 2021
629
0
Sorry your mum is in hospital @JHA, what a worry. Make sure that they know she was admitted from the care home and that is where she is to return to when they've sorted her out. I hope you are worrying unnecessarily but are social services clear that both the home and the consultant say she no longer has capacity to decide where she should live

Social Services have not been in touch since the beginning of January when the Duty Social Worker called to tell me they would allocate her a Social Worker. The duty one told me to chase them at the end of January. I feel numb at the moment as I cannot do anything and to find anything out is a mammoth task as it takes half a dozen calls to actually get some answers. I managed to get through to the unit where she is now and apparently she is very sleepy (the nurse actually described her as flat - not quite sure what she meant by that as my medical knowledge is limited), they have done bloods and a heart trace and a scan - everything that the GP wanted them to do on Wednesday. I dread my phone going!
 

canary

Registered User
Feb 25, 2014
18,222
0
South coast
Contact the hospital SW @JHA - that is not the same department as the ones you have been in contact with before. Hospital SWs are usually more helpful and if they know that she has come from a care home they will contact that home once she is ready for discharge,
 

JHA

Registered User
Aug 7, 2021
629
0
Contact the hospital SW @JHA - that is not the same department as the ones you have been in contact with before. Hospital SWs are usually more helpful and if they know that she has come from a care home they will contact that home once she is ready for discharge,
Thank you I will do that in the morning. I still have the number for Number 3 hospital Social Worker from last year so will call her - she actually did something to help.
 

Grahamfox1?

New member
Jan 22, 2022
8
0
My mom is not happy or settled in the care home yet - she wants to go home but I know it cannot happen. Last weekend she was very unsettled and on the Sunday did attempt to break out. The Mental Health Consultant altered her meds on Monday and all seemed ok until Wednesday night when she had a temperature and raised pulse - GP sent her to hospital to be checked out. Hospital gave precautionary antibiotics for a UTI and as far as I am aware did nothing else prior to discharge back to the care home. Early hours of this morning the care home rung to say that my mom was being taken back to the hospital as she was extremely sleepy and not talking whilst sitting in a chair. Spent most of this morning trying to find her at the hospital - in the end the hospital phoned me thinking I was the previous care home that she was in early last year! That is the 3rd time the hospital has done that and yet again I put them straight. They are now carrying out blood and water tests to find out if something is going on.

I can guarantee when they have ensured that she is medically fit someone in their wisdom will say she can go home - not a chance I should never have allowed Social Services to persuade me to let this happen in September as we are literally back to where we started and it is my mom that is suffering all this upheaval. Social Services will not have to fund a care home so I do not see why they keep insisting home is the best place. Sorry for rambling.
 

Grahamfox1?

New member
Jan 22, 2022
8
0
Social Services almost always side with the patient simply because 90% will want to go home and its cheaper than any other alternative , Social Services talk about patients best interest but there actions speak louder than words and are always about costs not care, They suggested 4 carers a day for Mum , morning lunch tea and bedtime, My first question was whos going to stop mum wandering of at night , Whos going to put out the fire when she overcooks something in the middle of the night, I was just ignored .
 

yorkie46

Registered User
Jan 28, 2014
399
0
Southampton
Well I finally got to breaking point just over a week ago after it took my husband 10 minutes to shuffle from the bedroom to the bathroom when I finally hauled him out of bed. He then sat at the basin and did nothing, I had to wash him which he would normally do himself. I ended up in tears and told him something had to change, I couldn't carry on like this. Life was just such a struggle for both of us. He became upset too and started to say well you'd better put me in a home, I don't want to be a burden. He says it in such a way that it makes me feel guilty. Anyway this time I told him I was going to phone the social worker for help. She came and visited us and talked to him about how I was worn out and who would look after him if I became ill. He always thinks he can do more than he can for himself but she knows he can't. She got him to show her how he could walk and of course he was far better than he normally is but she saw through it. She told me she knew it was for her benefit and she believed me when I tell her how bad he is. Eventually he agreed to 2 weeks respite and I was lucky that a place became available the next day. He went into the care home last Wednesday and I visited him yesterday. I was worried about how he would be and expected him to tell me how dreadful it was and he wanted to come home. He did say a couple of times I'll be glad to get home but he wasn't making a fuss. He said the carers were all very nice and the food was quite good. For him this is high praise because he is very critical. However what shocked me was how much he seemed to have gone downhill in the few days. His walking seemed much worse and they had 2 carers helping him. He seemed more distant and kept picking at his trousers and sleeves. He talked a lot about when he worked at the hospital and asked me some strange questions. Clearly had no recollection of how long he had been at the care home but is hanging on to it being for 2 weeks though he's not clear from when. The plan is that the social worker is arranging for her manager to visit to do a mental capacity assessment while he is there because the social worker doesn't think he has capacity. If it turns out he hasn't the decision then has to be made about him staying in the home. I'm hoping that the social worker will make this decision and explain it to him because I know if it's left to me it will be difficult. I know he will hate me if I tell him he has to stay there because he always makes me feel guilty. I don't know what will happen if he gets angry and refuses to accept that he can't come home. I'm deliberately not visiting him much because I feel that will give him more of a chance to settle. I'm still terribly anxious about the outcome but I know deep down I can't manage him at home especially as his mobility decreases.
 

Sarasa

Volunteer Host
Apr 13, 2018
4,747
0
Nottinghamshire
Hi @yorkie46 , that was a tough decision to have to make but it was the right one for you and your husband. I hope it is agreed that he can stay there, for both your sakes. With a team around 24/7 your husband will get all the care he needs and you can be his wife again not a frazzled carer.
If he does stay I’d just keep on telling him it’s till he’s built up his strength or when the doctor says he can rather than any of it being your decision.
Keep strong.
 

update2020

Registered User
Jan 2, 2020
176
0
Edit: sorry I wrote the below before I saw you have found the care home solution. Well done.

Ignore the rest of this.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,868
0
Kent
Hello @yorkie46

Everything has been leading to residential care and I`m pleased for you the situation is about to be resolved.

From your first post I was about to suggest you get support from the mental health team but see it is now on the cards.

Your husband`s difficulties are very similar to those my husband had, especially losing mobility.

Please don`t discuss too much with your husband.

As @Sarasa has suggested, I told my husband the doctor wanted him in convalescence to help build up his strength and he accepted this. Whenever he asked to come home, I told him I would ask the doctor. This took the blame off me.

Stay firm. This is the right time for residential care and it sounds as if you have found a home which feels good for you both.
 

canary

Registered User
Feb 25, 2014
18,222
0
South coast
Dont worry too much about the apparent deterioration. When they are at home they have the routine of your home and you to help "paper over" the problems that they are having, but when they move into a care home it shines a cruel light onto their difficulties. Once they have learned the new routine and got to know and trust the carers they often seem to improve (sometimes - like my mum - quite a lot).
 

Bettysue

Registered User
Mar 21, 2020
132
0
My partner has been in full time care since last Monday. I’ve seen him once on Friday. He looked smart and well cared for but very flat and blank. I got a few smiles as I’d taken the dog . We can’t explain anything to him as he has lost the ability to to use or understand language. I’m going again today and my stomach is churning at the thought. They assure me that I’m much upset than he is but it doesn’t really help. I can be very rational when discussing the situation but underneath I’m a mess.
 

JHA

Registered User
Aug 7, 2021
629
0
Social Services almost always side with the patient simply because 90% will want to go home and its cheaper than any other alternative , Social Services talk about patients best interest but there actions speak louder than words and are always about costs not care, They suggested 4 carers a day for Mum , morning lunch tea and bedtime, My first question was whos going to stop mum wandering of at night , Whos going to put out the fire when she overcooks something in the middle of the night, I was just ignored .

Social Services will not win this time and to be honest apart from a phone call on 4th January I have heard nothing from them. I know that my mom is not safe at home and I think now she has been in the respite care home and Police/GP/Consultant/Mental Health have been involved I have more to fight with. The stupid thing is SS will not have to fund her care she can afford to self fund for many years. Not sure if it would have been different if I had POA - registration is due shortly.

This week she has been back and forwards to the hospital - taken to A&E Wednesday night discharged without me being told on Thursday morning then back again to A&E early hours yesterday should be discharged today.

She has been in the respite care home for nearly four weeks unfortunately they have been on lockdown. I have had a couple of conversations with her on the phone (the last one floored me as she called me all the names under the sun for leaving her there). The problem I have is she is quite with it in that she knows where she is and does not want to be there but she has literally no idea what her care needs are - in her eyes there is nothing wrong with her.
 

MaNaAk

Registered User
Jun 19, 2016
7,255
0
Essex
Social Services will not win this time and to be honest apart from a phone call on 4th January I have heard nothing from them. I know that my mom is not safe at home and I think now she has been in the respite care home and Police/GP/Consultant/Mental Health have been involved I have more to fight with. The stupid thing is SS will not have to fund her care she can afford to self fund for many years. Not sure if it would have been different if I had POA - registration is due shortly.

This week she has been back and forwards to the hospital - taken to A&E Wednesday night discharged without me being told on Thursday morning then back again to A&E early hours yesterday should be discharged today.

She has been in the respite care home for nearly four weeks unfortunately they have been on lockdown. I have had a couple of conversations with her on the phone (the last one floored me as she called me all the names under the sun for leaving her there). The problem I have is she is quite with it in that she knows where she is and does not want to be there but she has literally no idea what her care needs are - in her eyes there is nothing wrong with her.
Dear @JHA ,

Give yourself a pat on the back and try to relax.

MaNaAk
 

canary

Registered User
Feb 25, 2014
18,222
0
South coast
Hi @JHA as your mum is self-funding you may not hear anything from SS at all now that she is in a care home. They may just leave it up to you to agree with the care home to make it permanent.
The problem I have is she is quite with it in that she knows where she is and does not want to be there but she has literally no idea what her care needs are - in her eyes there is nothing wrong with her.
Has the care home applied for a DoLS?
 

Sarasa

Volunteer Host
Apr 13, 2018
4,747
0
Nottinghamshire
Hi @Bettysue, how did the visit go? I think the home are correct when they say the whole thing is upsetting you more than your husband. When you go try and be as upbeat as you can be, as if he sees you are upset that will probably make him think he should be upset too. Things will get better, though it may take a few weeks or even months. In between try to do some things for yourself that you haven't been able to do in a while.
@JHA, like @canary I think the social worker probably will no longer be interested, so I'd worry about what they think when they actually re-appear if they do.