Refusing to go to respite care

[yorkie46]

Yesterday I broached the subject of respite care with my husband. He has frontal lobe dementia, extremely poor mobility and increasing incontinence. He had two weeks in respite care last September which while not a resounding success was OK. He has always said he doesn't want anyone but me to look after him so to actually get him to accept respite last year was an achievement. Well yesterday was a totally different matter. He immediately said I'm not going to be dumped somewhere so you can live your life! I was shocked! I'd been prepared for resistance but this was something else. He is adamant that he wants to stay at home and have a live in carer. I've explained to him that this isn't possible because we don't have a spare room but he doesn't understand. He told me we have a room upstairs that isn't used,we live in a bungalow! He now frequently thinks we are living somewhere else, not at home and often asks when we are going home or says we should have stayed at home. He regularly asks where the toilet is. We have lived here for over 50 years and it hasn't moved! Anyway I digress. My problem now is how do I convince him to accept that I need a break and he needs to go into respite care. He said some very hurtful things yesterday evening, reminiscent of pre diagnosis. He cried and said it would be better if he were dead. When he gets like this there's no reasoning with him. Whatever I say he becomes like a child in the playground throwing back silly remarks. If I say I'm tired and it's hard work he tells me it's the same for him. I've said if I become ill he will have to go into full time care and I don't want that and neither does he but he still won't budge. He doesn't see why he is the one who has to move out.
Does anyone have any suggestions please.

 

[canary]

You say that there is no reasoning with him (and that is usually the case with dementia) so stop trying to reason with him. Whatever you say he will not understand the reason why you need the break, so the only way to bridge that gap is love lies and subterfuge. Dont ask him if he wants to go - just book it and tell him something that he will accept. Lots of people have used the love lie that he is going on holiday in a hotel where the staff will wait on him hand and foot!

 

[UncleZen]

Well said, its harsh but true.

 

[yorkie46]

Good idea if there was anything that he would accept but there isn't. The bottom line is he doesn't want to go anywhere especially if it's without me. As I said he has never wanted anyone to care for him other than me. It would be impossible to pull the wool over his eyes. I spoke to the GP about it and she vaguely suggested maybe he doesn't have the mental capacity to make this decision but as I pointed out to her I have been down the mental capacity route twice when he's been in hospital and insisted on coming home and I've been told he has mental capacity. I feel someone needs to take this responsibility out of my hands. He is now working up to not going to day centre next Tuesday. Twice in the last 3 days he has told me he was unwell when I went to get him up. Both days he refused to get up until about 10am saying he felt too weak. I spoke to doctor on Friday and had an out of hours doctor to see him this morning. He could find no problem with his chest. I'm pretty much at a loss now who I can speak to about this.

 

[Rosettastone57]

No personal experience, but I'm wondering whether an independent social worker would help with capacity. Others will be along soon with better advice

 

[canary]

If you said that you were going out for coffee and cake right now, would he go with you , or are you stuck in the house with him 24/7?
Its not a good idea to tell people with more advanced dementia about things in advance because it just gives them more time to decide they are not going to do it. The time to tell them is on the day - or even once they are in the car. If there is anything that he will go out for - use that.

If you dont look after yourself there will be a crisis. What would happen if you were ill/broke your leg/caught covid?

 

[yorkie46]

I completely understand what you say about if I was taken ill but then the matter would be taken out if my hands.
He is virtually housebound because his mobility is so poor he is unable to walk down our drive to the car. The drive is also so steep that I am unable to take him out in his wheelchair. He walks indoors with a frame. So I am unable to take him anywhere. He has a place at a day centre once a week but is currently sabotaging that by refusing to get up in the morning claiming he is unwell. The day centre transport staff take him down the drive in his wheelchair and into the minibus. At the centre he has his frame or the wheelchair to use. On Thursday he promised the manager he will go next Tuesday but since then has claimed to be unwell. I had doctor from 111 today but he couldn't find anything wrong. I have sitters twice a week for 2 hours so I can get out to do shopping or go to appointments. I have had to cancel medical appointments because he has refused to go to day centre.

 

[Violet Jane]

If he won't go to the day centre then I would pay for more care so that you can have a break. Do you have a friend or family member that you could visit so that you're not just wandering around the shops or sitting in a cafe?

 

[MaNaAk]

I completely understand what you say about if I was taken ill but then the matter would be taken out if my hands.
He is virtually housebound because his mobility is so poor he is unable to walk down our drive to the car. The drive is also so steep that I am unable to take him out in his wheelchair. He walks indoors with a frame. So I am unable to take him anywhere. He has a place at a day centre once a week but is currently sabotaging that by refusing to get up in the morning claiming he is unwell. The day centre transport staff take him down the drive in his wheelchair and into the minibus. At the centre he has his frame or the wheelchair to use. On Thursday he promised the manager he will go next Tuesday but since then has claimed to be unwell. I had doctor from 111 today but he couldn't find anything wrong. I have sitters twice a week for 2 hours so I can get out to do shopping or go to appointments. I have had to cancel medical appointments because he has refused to go to day centre.

I didn't tell dad that he was going into respite after a few visits to the care home where we were going to see our 'friend' (care home manageress who visited us a week before) I took dad to the home just before they were due to start an activity. One of the carers ushered us in and distracted dad whilst I left. I was nervous about deceiving dad but it needed to be done. You have to do it for your sake as well as your husband's.

Hugs

MaNaAk

 

[JHA]

I hinted about a temporary place at a care home to my mom after I had stayed with her for 8 days solid after she went out in the middle of the night. She willingly went but is now doing everything she can to return home. Unfortunately returning home is not an option as she is not safe there and I cannot be in two places at once for ever.

My mom has varying levels of capacity - she was hospitalised in July then went to an assessment bed in a care home - the lovely Social Worker then decided she had capacity and let her go home with a care package. Care package lasted just over four weeks before she got rid of them then it was down to me and three months later we are back in the same situation. I had the GP out and a Mental Health Consultant the day after she wandered in the middle of the night both said she either lacked capacity or was incapacitated yet on the following Monday the Doctor that came out seemed to think she had capacity.

 

[MaNaAk]

The 'lovely' social worker has been fooled by host mode yes you're going to have to use love lies @JHA.

Good luck

MaNaAk

 

[MaNaAk]

I've just reread your post and I am amazed at the doctor!

MaNaAk

 

[JHA]

The 'lovely' social worker has been fooled by host mode yes you're going to have to use love lies @JHA.

Good luck

MaNaAk

I agree they were fooled by host mode. I gave in to my mom and the Social Worker and agreed to try her going home in September but with the best will in the world I cannot do it again.

The doctor that came out on the Monday was to be honest brilliant with my mom and she did go into host mode big time I was on the end of the repercussions and fall out after he left.

I made the mistake of taking her my house for lunch so that I could shower and change my clothes - we lasted there for about an hour she was horrible, demanding to go and see her mom, her aunties and was aggressive with it and as my kids were there I returned back to her house with her as I did not want them to witness her behaviour.

I know she cannot help it and there are the odd parts of 'my mom' which do appear occasionally but this wicked cruel disease seems to have brought out the worst in her - zero empathy, zero filter and I cannot allow my boys to have this memory.

My mom is currently in a respite bed and at some point Social Services will be meeting with us to agree what happens next - I will not be supporting a return home,

 

[MaNaAk]

I agree they were fooled by host mode. I gave in to my mom and the Social Worker and agreed to try her going home in September but with the best will in the world I cannot do it again.

The doctor that came out on the Monday was to be honest brilliant with my mom and she did go into host mode big time I was on the end of the repercussions and fall out after he left.

I made the mistake of taking her my house for lunch so that I could shower and change my clothes - we lasted there for about an hour she was horrible, demanding to go and see her mom, her aunties and was aggressive with it and as my kids were there I returned back to her house with her as I did not want them to witness her behaviour.

I know she cannot help it and there are the odd parts of 'my mom' which do appear occasionally but this wicked cruel disease seems to have brought out the worst in her - zero empathy, zero filter and I cannot allow my boys to have this memory.

My mom is currently in a respite bed and at some point Social Services will be meeting with us to agree what happens next - I will not be supporting a return home,

Can I just ask if your mum is self-funding and do you have POA? I ended up putting dad back into respite care with a view to permanent care after he came out of respite and had another fall. I explained to my brothers why dad needed to be in permanently and my dementia friend from my local authority came to talk about it and agreed that it was best for dad to be in a home. One of my brothers later said that I didn't have his permission but that's another story.

I know exactly how you feel and once dad settled he seemed a lot better eventhough it was probably host mode that I saw him in. There was a review by the dementia nurse some time later and what I read was harrowing but the nurse was very good and said that it was normal for a dementia sufferer to behave like that at first.

MaNaAk

 

[JHA]

Can I just ask if your mum is self-funding and do you have POA? I ended up putting dad back into respite care with a view to permanent care after he came out of respite and had another fall. I explained to my brothers why dad needed to be in permanently and my dementia friend from my local authority came to talk about it and agreed that it was best for dad to be in a home. One of my brothers later said that I didn't have his permission but that's another story.

I know exactly how you feel and once dad settled he seemed a lot better eventhough it was probably host mode that I saw him in. There was a review by the dementia nurse some time later and what I read was harrowing but the nurse was very good and said that it was normal for a dementia sufferer to behave like that at first.

MaNaAk

My mom will be self funding and POA is currently with OPG expecting it to be issued end January/beginning February, I am an only child so I have to convince myself that what I am trying to achieve is the best for her. - my ultimate aim is that she is safe, cared for and if I can manage it happy (that is probably the most difficult one). My uncle (her brother) is also on the POA but he will only step in if I cannot act.

 

[canary]

my ultimate aim is that she is safe, cared for and if I can manage it happy (that is probably the most difficult one)

That is indeed the very best thing that you can do for her and remember that two out of three aint bad.
xx

 

[MaNaAk]

My mom will be self funding and POA is currently with OPG expecting it to be issued end January/beginning February, I am an only child so I have to convince myself that what I am trying to achieve is the best for her. - my ultimate aim is that she is safe, cared for and if I can manage it happy (that is probably the most difficult one). My uncle (her brother) is also on the POA but he will only step in if I cannot act.

Then you are free to choose where and when to put her into care and don't forget you are doing it out of love.

MaNaAk

 

[yorkie46]

Everyone's posts on here made very interesting reading. My husband did go to day centre this week and enjoyed it. However the problem of his poor mobility raised its head again. It seems at the new centre the toilets are much further away from the room they use and he would never have managed the distance. For that reason they used his wheelchair. So it seems apart from transferring from chair to wheelchair and wheelchair to seat on minibus his legs saw no action. This explains why when he arrived home it was a terrifyingly difficult job to get him from the back door to his chair in the lounge. Several times I thought his legs were going to buckle and I was holding him up by the waist of his trousers! We made it eventually but I found it physically and mentally draining. Spoke to day centre manager today and she said next week she will encourage him to walk part of the way before they resort to wheelchair because she can understand that it didn't help me. The social worker has offered to come to speak to him about respite. I'm sure he will be cross that I told her he's refusing to go. Last time he was in hospital I begged them to send him to a care home for further assessment and after many promises that they would he came home because he was assessed as having capacity. When I questioned who had done the capacity assessment it eventually came to light that nobody did, the consultant just talked to him and decided he could come home. He deduced that he had capacity without doing a proper assessment. Had they acted on my request I may not be in the position I am now. Today I spoke to the GP again, she had little to offer other than ask the independence team to make the referral urgent. Suggested more carers again but I explained they don't come at the right time. She suggested we need to be flexible. When will doctors learn that people with dementia don't do flexible! She also said it doesn't matter if he stays in bed some days! We'll it matters to me. I'll be the one running backwards and forwards with drinks, meals, medication etc and what will that do for his mobility!
I'm awaiting developments.

 

[TNJJ]

Everyone's posts on here made very interesting reading. My husband did go to day centre this week and enjoyed it. However the problem of his poor mobility raised its head again. It seems at the new centre the toilets are much further away from the room they use and he would never have managed the distance. For that reason they used his wheelchair. So it seems apart from transferring from chair to wheelchair and wheelchair to seat on minibus his legs saw no action. This explains why when he arrived home it was a terrifyingly difficult job to get him from the back door to his chair in the lounge. Several times I thought his legs were going to buckle and I was holding him up by the waist of his trousers! We made it eventually but I found it physically and mentally draining. Spoke to day centre manager today and she said next week she will encourage him to walk part of the way before they resort to wheelchair because she can understand that it didn't help me. The social worker has offered to come to speak to him about respite. I'm sure he will be cross that I told her he's refusing to go. Last time he was in hospital I begged them to send him to a care home for further assessment and after many promises that they would he came home because he was assessed as having capacity. When I questioned who had done the capacity assessment it eventually came to light that nobody did, the consultant just talked to him and decided he could come home. He deduced that he had capacity without doing a proper assessment. Had they acted on my request I may not be in the position I am now. Today I spoke to the GP again, she had little to offer other than ask the independence team to make the referral urgent. Suggested more carers again but I explained they don't come at the right time. She suggested we need to be flexible. When will doctors learn that people with dementia don't do flexible! She also said it doesn't matter if he stays in bed some days! We'll it matters to me. I'll be the one running backwards and forwards with drinks, meals, medication etc and what will that do for his mobility!
I'm awaiting developments.

Hi! I’m in a similar position with my dad . He is out in his recliner every day but doesn’t walk. He has carers 4X a day. He refuses to go to respite too. He also has been assessed as having “ fluctuating capacity “. So I no longer push it. But he is asking to go to bed earlier and is also starting to say he wants to stay in bed sometimes. So we shall see. It is definitely frustrating to say the least.

 

[Grahamfox1?]

I hinted about a temporary place at a care home to my mom after I had stayed with her for 8 days solid after she went out in the middle of the night. She willingly went but is now doing everything she can to return home. Unfortunately returning home is not an option as she is not safe there and I cannot be in two places at once for ever.

My mom has varying levels of capacity - she was hospitalised in July then went to an assessment bed in a care home - the lovely Social Worker then decided she had capacity and let her go home with a care package. Care package lasted just over four weeks before she got rid of them then it was down to me and three months later we are back in the same situation. I had the GP out and a Mental Health Consultant the day after she wandered in the middle of the night both said she either lacked capacity or was incapacitated yet on the following Monday the Doctor that came out seemed to think she had capacity.

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.