Living and looking after someone with dementia - won't go into a care home - my bf says we have no choice?

[lake_disappointment]

Hi all! I have posted here before and I appreciate all your replies.

My question today is regarding my bf and my FIL. FIL has Alzheimer's, has been living with my bf for a year and a half now. My bf has an LPA. His dad is good some days, but generally very confused, gets lost in my bf's small 2 bed flat, can forget to eat, when he's been really tired he's urinated in my bf's cupboard on two occasions. But he's still active and seemingly with it sometimes, if a bit slow. My bf however is at breaking point and is sick of living and caring for his dad. Thankfully now carers are coming to help out a bit now.

My bf is still trying to get his dad into a care home nearby which looks real nice, and they have an assessment at the beginning of January. However, if my FIL says "I don't feel I need care" then they won't take him. My FIL is very very anti care home and has said for years, even when well - "don't put me in a care home". Most people say here that LO's with dementia will never willingly go to a care home. So now my bf is 90% sure this assessment won't go anywhere.

My bf wants a backup long term plan considering he's at breaking point, but keeps saying it's all out of his control and it's up to his dad. My bf feels like he doesn't have a choice cos his dad is anti care home. I don't know if he's being overly negative cos he doesn't want to get his hopes up.

There was talk of moving his dad into rental accommodation and having full time carers come as a backup plan, which isn't ideal because it's very expensive, but could be a temporary solution if his dad is deemed "having mental capacity". It obviously comes with it's own set of problems but surely better to finally have some space again!?

My bf has just been very negative today about all the options basically. I don't know if that's just a day of being done with it all, or that there is no choice and it's going to drag on for years living with my FIL. None of the solutions seem ideal. But surely there are options!? Any ideas? Or would you agree that living with someone with dementia robs you of options and choices, even if you don't want to be looking after them?

 

[try again]

Ultimately It is up to social services to care for your fil.
Have they been involved at this point? Ask them to do an urgent assessment of his needs. Does your boyfriend have lpa for health as well as finance?
If nothing else at this stage, your boyfriend should demand some respite care as he is burnt out

 

[Violet Jane]

Who owns the property? If the property belongs to your BF and his father has no legal interest in it then your BF can tell SS that he's evicting his father and that SS must find him somewhere else to live. That could be sheltered housing or a care home. SS will put pressure on your BF not to evict his father but your BF is under no obligation to house and care for his father personally. However, I think that your BF does have some responsibilities under the LPA if it is one for health and welfare. He could of course renounce it if he's worried.

 

[lake_disappointment]

Ultimately It is up to social services to care for your fil.
Have they been involved at this point? Ask them to do an urgent assessment of his needs. Does your boyfriend have lpa for health as well as finance?
If nothing else at this stage, your boyfriend should demand some respite care as he is burnt out

They haven't been involved at this point no. So he's going to try them to chat some options.

My boyfriend has both LPA for finance and health.

But yes I'm like even a temporary solution would be good - my boyfriend just wants a long term solution now though. But I'm like take what you can!

 

[lake_disappointment]

Who owns the property? If the property belongs to your BF and his father has no legal interest in it then your BF can tell SS that he's evicting his father and that SS must find him somewhere else to live. That could be sheltered housing or a care home. SS will put pressure on your BF not to evict his father but your BF is under no obligation to house and care for his father personally. However, I think that your BF does have some responsibilities under the LPA if it is one for health and welfare. He could of course renounce it if he's worried.

Thank you for your reply!

The property belongs to my bf yes. So I suppose he could say that to social services, but I doubt he'll want to. He keeps saying he doesn't have a choice, but I mean that is a choice he could do. But I feel he won't want to feel like he's throwing his dad on the street. Surely there are options though, it seems mad that my bf just has to put up with this. Surely a care home of some sort might take his dad?

 

[Infinite]

All the above nitemare illustrates how tragic & sad everyone dealing with A relative with Dementia gets its the most emotional turmoil & seemingly no easy answer.The safety net doesn't exist I so hope a comprimise can be found to give a much needed break for all

 

[Banjomansmate]

Where did your boyfriend’s father live before he moved in with his son? If he lived in privately rented premises then you could say he could go back into the private rental market again but it isn’t going to be a quick fix and with Christmas in the offing it is unlikely anything will be organised until the new year.

 

[lake_disappointment]

Where did your boyfriend’s father live before he moved in with his son? If he lived in privately rented premises then you could say he could go back into the private rental market again but it isn’t going to be a quick fix and with Christmas in the offing it is unlikely anything will be organised until the new year.

He lived alone in a house he owned that they are now trying to sell. So I suppose private rental market could be an option though perhaps temporary, but at least to give my bf a bit of space.

I realise nothing will be sorted until the new year now, I'm more concerned that nothing is going to get sorted for years and it's going to drag on and on until his dad is clearly very unwell, and I've heard Alzheimer's can last for ten or more years!

 

[lake_disappointment]

All the above nitemare illustrates how tragic & sad everyone dealing with A relative with Dementia gets its the most emotional turmoil & seemingly no easy answer.The safety net doesn't exist I so hope a comprimise can be found to give a much needed break for all

Thank you, saying there is no safety net does help tbh cos I feel my bf is looking for a magical solution to sort things for good, and that might not be the case yet unfortunately. But yes I hope something can be sorted, my bf is at his wits end. Thank you

 

[Violet Jane]

It's not just the lack of services but the very complex issues of legal capacity and the rights of the individual with dementia. Quite rightly, SS will not force people to go and live somewhere against their will unless there are compelling reasons relating to the person's welfare and safety. Where a person has a residential carer those compelling reasons won't exist unless and until there is a safeguarding issue or the carer has reached carer breakdown and can't care for the person any more. The moral of the story is: don't move a PWD in with you as it will be hard to get SS to take any action when things become unbearable.

If the father still has a house then couldn't he move back there with a care package?

 

[lake_disappointment]

It's not just the lack of services but the very complex issues of legal capacity and the rights of the individual with dementia. Quite rightly, SS will not force people to go and live somewhere against their will unless there are compelling reasons relating to the person's welfare and safety. Where a person has a residential carer those compelling reasons won't exist unless and until there is a safeguarding issue or the carer has reached carer breakdown and can't care for the person any more. The moral of the story is: don't move a PWD in with you as it will be hard to get SS to take any action when things become unbearable.

If the father still has a house then couldn't he move back there with a care package?

For sure, and exactly why I was reluctant of it happening in the first place because now my bf is just stuck. My dad said it from the start that the SS won't help my bf if he moves in, but they figured they could figure out next steps and here we are a year and a half later.

I suppose his house is an option, but it's a huge house and quite far away and remote , from both my bf and my BIL. They're quite keen to sell it instead and have their father nearby! Hence perhaps renting

 

[Clarrisa]

Some care homes offer respite care. Your bf could look at that option to give himself a break and see if his dad settles in. He could say to his dad it’s a short holiday. If your bf‘s dad would be self funding then social services dont need to be involved and he can contact the care home directly.

 

[Chizz]

Hi all! I have posted here before and I appreciate all your replies.

My question today is regarding my bf and my FIL. FIL has Alzheimer's, has been living with my bf for a year and a half now. My bf has an LPA. His dad is good some days, but generally very confused, gets lost in my bf's small 2 bed flat, can forget to eat, when he's been really tired he's urinated in my bf's cupboard on two occasions. But he's still active and seemingly with it sometimes, if a bit slow. My bf however is at breaking point and is sick of living and caring for his dad. Thankfully now carers are coming to help out a bit now.

My bf is still trying to get his dad into a care home nearby which looks real nice, and they have an assessment at the beginning of January. However, if my FIL says "I don't feel I need care" then they won't take him. My FIL is very very anti care home and has said for years, even when well - "don't put me in a care home". Most people say here that LO's with dementia will never willingly go to a care home. So now my bf is 90% sure this assessment won't go anywhere.

My bf wants a backup long term plan considering he's at breaking point, but keeps saying it's all out of his control and it's up to his dad. My bf feels like he doesn't have a choice cos his dad is anti care home. I don't know if he's being overly negative cos he doesn't want to get his hopes up.

There was talk of moving his dad into rental accommodation and having full time carers come as a backup plan, which isn't ideal because it's very expensive, but could be a temporary solution if his dad is deemed "having mental capacity". It obviously comes with it's own set of problems but surely better to finally have some space again!?

My bf has just been very negative today about all the options basically. I don't know if that's just a day of being done with it all, or that there is no choice and it's going to drag on for years living with my FIL. None of the solutions seem ideal. But surely there are options!? Any ideas? Or would you agree that living with someone with dementia robs you of options and choices, even if you don't want to be looking after them?

Hi @lake_disappointment

With regard to whether a PWD goes into care home or not, it's about what care is required for PWD's needs, and whether your BF is able and willing to provide such care - as you've said BF is at end of tether or not far from it.
BF is not legally obliged to carrying on caring, and certainly there is no point in BF doing this if it means BF becomes a patient from over doing it or carer burn out.
The needs of the PWD come first and trump the PWD's wants.
If BF really feels he can't go on, then he has to tell LA ASS that he can't go on, crisis point reached etc and LA will have to assess situation, but they will only act in a crisis and will only take FiL into home if BF insists he can't go on. The LA resist the spending of their budget as much as and as long as possible. They take advantage of any carer who says well Ok I'll struggle on.

 

[Sonya1]

If BF really feels he can't go on, then he has to tell LA ASS that he can't go on, crisis point reached etc and LA will have to assess situation, but they will only act in a crisis and will only take FiL into home if BF insists he can't go on. The LA resist the spending of their budget as much as and as long as possible. They take advantage of any carer who says well Ok I'll struggle on.

But if the Father has a house to sell, the LA will not ultimately be funding it surely?

 

[canary]

In the Mental Health Act it enshrined that people have the right to choose and even if they have lost capacity, their wishes have to be "taken into consideration". This means that if someone is reliant on Local Authority funding and they refuse to go into respite, then unless they are considered "at risk" Social Services will not override their wishes.
Even if you are self-funded I am not sure that care homes will accept someone with dementia for respite without their agreement. Certainly when I got OH into respite the care home manager had asked him whether he would like to come. Fortunately I had pitched it to OH as a little break and when we went to look at it I think he was probably in Host Mode, so when the manager asked him if he would like to come he agreed.

 

[Chizz]

But if the Father has a house to sell, the LA will not ultimately be funding it surely?

Hi @Sonya1 + @lake_disappointment

As I understand it, if your FiL (PWD) owns a house in his own name, and no-one else over 60 has a right to live in that house, then if PWD goes into care home, the LA give 12 weeks - whilst they pay the care home at the LA rate (which usually is a lot less than care home would usually charge) - for house to be sold. This is not usually sufficient time in this current house market (let alone packing up, storing or clearing all items in the house), in which case the LA, if requested, usually agree to enter into a deferred loan scheme. That is, the LA pay the care home, and put a "charge" (or mortgage o the property), on the basis that on the completion of the property sale, the proceeds of sale are used to pay off the LA in full plus some interest. Then, PWD having money in excess of £23,250 would be a self funder to pay the care home direct for his care (at the care home's self fund charging rate).

 

[lake_disappointment]

Some care homes offer respite care. Your bf could look at that option to give himself a break and see if his dad settles in. He could say to his dad it’s a short holiday. If your bf‘s dad would be self funding then social services dont need to be involved and he can contact the care home directly.

This was an idea with the current care home - to at least try one month respite to see if he likes it. But even then - if his dad says no, they won't let him in. It feels horrid!

 

[lake_disappointment]

Hi @lake_disappointment

With regard to whether a PWD goes into care home or not, it's about what care is required for PWD's needs, and whether your BF is able and willing to provide such care - as you've said BF is at end of tether or not far from it.
BF is not legally obliged to carrying on caring, and certainly there is no point in BF doing this if it means BF becomes a patient from over doing it or carer burn out.
The needs of the PWD come first and trump the PWD's wants.
If BF really feels he can't go on, then he has to tell LA ASS that he can't go on, crisis point reached etc and LA will have to assess situation, but they will only act in a crisis and will only take FiL into home if BF insists he can't go on. The LA resist the spending of their budget as much as and as long as possible. They take advantage of any carer who says well Ok I'll struggle on.

Yes I figured SS don't do a lot unless they have to 😅 Also cos my FIL is self funding there seems even less, I think my BF just wants to ask if there are any backup options - which at the moment there seems to be none

Thank you, that's helpful with carer burnout then affecting the needs of the PWD.

 

[lake_disappointment]

In the Mental Health Act it enshrined that people have the right to choose and even if they have lost capacity, their wishes have to be "taken into consideration". This means that if someone is reliant on Local Authority funding and they refuse to go into respite, then unless they are considered "at risk" Social Services will not override their wishes.
Even if you are self-funded I am not sure that care homes will accept someone with dementia for respite without their agreement. Certainly when I got OH into respite the care home manager had asked him whether he would like to come. Fortunately I had pitched it to OH as a little break and when we went to look at it I think he was probably in Host Mode, so when the manager asked him if he would like to come he agreed.

This is what I'm wondering with the murky legality of what capacity is. It seems however that at least 70% of PWD don't want care or to go into care homes - from what I understood some homes will take PWD against their will, if they assess the person and they need care than what can currently be provided. Perhaps I'm wrong. I just feel FIL will never say yes, especially with lack of insight and anosognosia. We need an option as it currently feels like there are none

 

[lake_disappointment]

Hi @Sonya1 + @lake_disappointment

As I understand it, if your FiL (PWD) owns a house in his own name, and no-one else over 60 has a right to live in that house, then if PWD goes into care home, the LA give 12 weeks - whilst they pay the care home at the LA rate (which usually is a lot less than care home would usually charge) - for house to be sold. This is not usually sufficient time in this current house market (let alone packing up, storing or clearing all items in the house), in which case the LA, if requested, usually agree to enter into a deferred loan scheme. That is, the LA pay the care home, and put a "charge" (or mortgage o the property), on the basis that on the completion of the property sale, the proceeds of sale are used to pay off the LA in full plus some interest. Then, PWD having money in excess of £23,250 would be a self funder to pay the care home direct for his care (at the care home's self fund charging rate).

Thank you - yes my FIL would self fund regardless of the house sale as he has other savings fortunately. I think my BF just wants SS to explore what other options there could be as my BF feels he has none.