Care home funding
Discussion
Looking for personal experiences, please, before we talk to Social Services.
In summary, my parents are in their 80s - Mum is fit and well in body and mind, but Dad is suffering from Alzheimer's, poor mobility, a hernia and three aneurysms in his aorta.
In reality, it's a waiting game, but Mum is now struggling to manage physically and mentally, although she won't yet fully admit it. We've had a stairlift installed and a carer visits every morning to help Dad get up etc. All funded by M&D, assisted by Attendance Allowance.
The inevitable next stage, which we've yet to discuss (but will be doing so very shortly), will be a care home, hence this post.
I'm hoping that others, with similar experiences, can share what's happened regarding funding.
M&D live in their own home (same house for 50+ years) but, for historical and personal reasons, ownership is split four ways, with M&D each owning one quarter and my brother and I also each owning one quarter. Mine and brother's shares werent 'gifted'. House is worth less than £200k.
They have limited savings.
I'm going to see them next week (300+ miles away, which doesn't help...), so any guidance regarding funding will be gratefully appreciated.
TIA.
In summary, my parents are in their 80s - Mum is fit and well in body and mind, but Dad is suffering from Alzheimer's, poor mobility, a hernia and three aneurysms in his aorta.
In reality, it's a waiting game, but Mum is now struggling to manage physically and mentally, although she won't yet fully admit it. We've had a stairlift installed and a carer visits every morning to help Dad get up etc. All funded by M&D, assisted by Attendance Allowance.
The inevitable next stage, which we've yet to discuss (but will be doing so very shortly), will be a care home, hence this post.
I'm hoping that others, with similar experiences, can share what's happened regarding funding.
M&D live in their own home (same house for 50+ years) but, for historical and personal reasons, ownership is split four ways, with M&D each owning one quarter and my brother and I also each owning one quarter. Mine and brother's shares werent 'gifted'. House is worth less than £200k.
They have limited savings.
I'm going to see them next week (300+ miles away, which doesn't help...), so any guidance regarding funding will be gratefully appreciated.
TIA.
Lots of good info here
https://www.ageuk.org.uk/
Went through this just a few years ago. Only personal experience I can recommend is to go through social services as have options for deferred payments. It can be a painful experience - wishing you all the best with it.
ETA: If not already in place, look to get LPAs for both money and health (probably too late for your dad if he has diminished capacity)
https://www.ageuk.org.uk/
Went through this just a few years ago. Only personal experience I can recommend is to go through social services as have options for deferred payments. It can be a painful experience - wishing you all the best with it.
ETA: If not already in place, look to get LPAs for both money and health (probably too late for your dad if he has diminished capacity)
Edited by Exiled Imp on Friday 3rd May 19:32
Exiled Imp said:
Lots of good info here
https://www.ageuk.org.uk/
Went through this just a few years ago. Only personal experience I can recommend is to go through social services as have options for deferred payments. It can be a painful experience - wishing you all the best with it.
ETA: If not already in place, look to get LPAs for both money and health (probably too late for your dad if he has diminished capacity)
Thanks EI.https://www.ageuk.org.uk/
Went through this just a few years ago. Only personal experience I can recommend is to go through social services as have options for deferred payments. It can be a painful experience - wishing you all the best with it.
ETA: If not already in place, look to get LPAs for both money and health (probably too late for your dad if he has diminished capacity)
Edited by Exiled Imp on Friday 3rd May 19:32
Age UK have already been really helpful, but that's a handy reminder. I'll take a look.
LPAs in place, thankfully. We did ours a few years ago, then encouraged M&D to do the same.
Terminator X said:
My understanding is that if you have £23k of savings excl the house you are own your own until savings drops to that amount then the state step in.
TX.
Pretty sure that's not the case, I'd love it if it was!TX.
Mother has been in a local authority care home (dementia) for almost three years now, and as she owned her own home the house has been put on charge to pay for it. She also has savings well in excess of the 23k but at the time of going into the home, they were only concerned with her house ownership.
Currently 1200 odd quid a week and we have to supply toiletries.
It is a mine field, from my experience the social services people will do pretty much anything to create a pot of your money to pay for the care through fair means or foul. If there is any money around they are like a rat up a drain pipe.
In our case there was plenty of pressure applied to just get you to sign things without having time to digest what they really meant and impact.
It is an emotive subject and worrying time so take your time to understand things, don't be bullied into signing things if you are not clear or happy with your understanding. They do this everyday and know all the ins and outs, you are the lamb.
In our case there was plenty of pressure applied to just get you to sign things without having time to digest what they really meant and impact.
It is an emotive subject and worrying time so take your time to understand things, don't be bullied into signing things if you are not clear or happy with your understanding. They do this everyday and know all the ins and outs, you are the lamb.
Wow.
Really useful responses gents, thanks so much for taking the time to reply - and apologies that it's taken me a few days to get back to you. I'm with M&D now for a few days and am very carefully observing the current state of play and therefore 'what's next'.
Thankfully, there is no obvious deterioration in Dad's mobility or state of mind since I last saw him about eight weeks ago. In fact, we've just had a chat over lunch and it wasn't all one-sided or weather related....
I'll happily take all the comments and experiences on board. It is now evident that care in the home is the preferred way forward for as long as reasonably possible, which gives me plenty to consider and plan.
Thanks again.
Really useful responses gents, thanks so much for taking the time to reply - and apologies that it's taken me a few days to get back to you. I'm with M&D now for a few days and am very carefully observing the current state of play and therefore 'what's next'.
Thankfully, there is no obvious deterioration in Dad's mobility or state of mind since I last saw him about eight weeks ago. In fact, we've just had a chat over lunch and it wasn't all one-sided or weather related....
I'll happily take all the comments and experiences on board. It is now evident that care in the home is the preferred way forward for as long as reasonably possible, which gives me plenty to consider and plan.
Thanks again.
I think the law is quite clear in that you must pay for your own care (home) until your only asset is £23k in savings (not sure if/when exceptions are made). My guess is you will need to sell the house. Dad will need a home equipped to deal with Alzheimer's, which will be more expensive (though you don't mention how far along he has progressed).
Risonax said:
Mixed experiences. Apologies if this is a long reply.
Mum suffered a spinal cord infarction in early 2017, and dad was diagnosed with AD a few months later while living alone, while mum was at the spinal unit in Sheffield "learning" about rest of life in a wheelchair.
They did well for a few years, caring for each other. Changes only followed a crisis; so a crisis resulted in carers to help mum in and out of bed, as dad could no longer manage it, and later another crisis, carers to help him.
Carers at home are a mixed bag; set your expectations low. They have little in the way of training, some will go the extra mile, most seem to be bone idle, and lack common sense. Really push things with their managers. The worst are those carers with a bit of nursing background. For one, if they are a qualified nurse, why are they a carer. One of my mum's carers was a Romanian A&E nurse, but he wasn't allowed to work in the NHS due to failure to complete an English test (his English was fine); his background lead him to step over a line in the tasks he could do as a carer, and what he couldn't, eg providing controlled medication. He got into a bit of a mess over it.
Adult Social Services Financial Assessement; most departments don't know their own process, and that you can claim for costs due to disability, but you MUST have receipts. eg that stair lift, if you paid for it yourself, then the cost divided by expected service life, the costs of servicing the stair lift, any aids you have to buy around the house, increased laundry costs (if not yet, your dad will end up increasing the laundry needed due to accidents).
When mum and dad were both still around, dad was on an army officer pension plus a NHS and a company pension, so was actually financially ok, mum is on a smaller pension. A financial assessment for each of them meant the household bills were split equally, which helped my mum on the lower pension, so her social care contribution was capped at £50 a week, but dad's was £500 a week.
There are two assessments for care; the first is how much care your dad needs and how much your mum needs. If your dad needs help getting up, he will need help getting to bed. This assessment is nothing to do with what they pay.
The Financial Assessment will determine their contribution. Care is billed at £50 per hour
The first FA they had worked outs reasonably. When my dad died, it all went wrong. When he died, my mum's income went up, because she inherited half his pensions. But on the other hand, her bills doubled (the house cost as much to heat with one person as two). I had expected that in the grand scheme, her contribution would go up a bit.
However, a frankly useless social worker helped my mum complete the assessment, and I was aghast to see her contribution go from £50 a week to £500, when her monthly income was less than £2500.
Eventually, through gathering evidence of the cost of her disability (if you are disabled, life is more expensive than if you are able bodied), I got that down to £120 a week. I had to instruct the council how to do their assessments. It worked.
I don't know how many years your dad has gone from his AD diagnosis. It is a terminal diagnosis, but the etiology differs in sufferers. Dad lasted 5 years from diagnosis, from the point when it was barely noticeable (he was still driving) to the point where his day was semi-comatose. 5-7 years is about average for AD. I had accepted that you cannot stop progression of AD.
I think the big mistake I made was in 2021, when I allowed him to go into respite care, while my mum needed a bit of hospitalisation. That 4 weeks saw him walk into the home, and for the first week, visitors were so impressed about how he was doing (dad made the effort), to the point when I came to collect him, he was in a semi-comatose state, wearing someone else's clothes, and had to left him into the car (and I made the mistake of bringing the MX5). He lasted about 4-6 weeks afterwards, never left bed again, but he died at home, in his sleep, and I think, reasonably content (he got to see all his family before he went), with me at his side. In a carehome, that never happens. Someone passes, by the time the family are contacted, the body is already at a funeral home, and the room is being readied for a new resident. Sometimes that can't be avoided.
The reason why he got into that state was a fall in the care home, which wasn't reported to the family. He was taken to cardiology, but then discharged back to the home. The cardiologist diagnosed heart failure and recommended a pace maker. My mother, a retired nurse, veto'd this. The consultant agreed there was no benefit. A majority of pacemakers are fitted to people with dementia, and all they do is to sustain the body, but not the mind, with obvious terrible outcomes.
My mistake was I should not have let him go into respite, but instead, should have been there with him , looked after him. The fall might well have happened anyway, though the GP said its common for people with AD and dementia, once in a carehome environment, to go rapidly down hill, once they don't have to do anything. At home, dad would always make an effort to hang out the laundry, make his bed, cut the grass, have a root around the fridge for a snack, in a place he knew well, his home. It kept him busy. Yes, he would make a pigs ear of the bed, the washing would end up on the grass, and odd things would end up in the fridge. But none of that mattered. I think his decline would have been slower, though not without its crisis moments. AD eventually affects the autonomic system; how the heart is controlled. When my dad died, while he might not have recognised everyone, he remembered everyone. Some poor sods end their lives forgotting they had any kids at all (my grand dad), and they end their days in distress. He ended his days quietely. If he had died in a carehome, it would have been an ordinary, unremarkable event in that setting.
I'm glad for my dad that he died at home, and not on a hospital ward with tubes hanging out of his side being treated for some hospital acquired infection.
Now to my mother. She is now in a nursing home, with full continuous healthcare for the forseable, which means her home doesn't need to be sold, and now it sits empty, with me wondering what to do with it (I have full LPA), and what to do with a lifetime of things.
Nursing homes versus "care"/residential homes. What home your dad can go to depends on his needs. You will find there are not as many vacancies as you think, even less if your dad has nursing needs. You will be asked to make a decision rather quickly. What's most important to you; for dad to be near mum, be near to you, or what's best for him. The requirements will likely not coincide.
The care home my dad was in for respite looked superficially ok. But you soon notice a low ratio of staff. The old battered furniture. The room they used for my dad seemed to be more like a store room, next to laundry, away from other bedrooms, and windowless. The carers seemed to be surly older women, no men I noticed.
Where my mum is, is completely different. There is a better ratio of carers, they seem to be younger (mostly filipino and Zimbabwaen, and full of beans, with a few men on hand, to handle the blokes, and to do the heavy lifting when needed). But this was through pure luck. But even though it looks much better than other places, I can still find things to gripe about. The cost is £1600 per week. For that she gets a small room with a 20 year old Sony TV, with missing remote. So she is stuck watching horse racing all day. The windows don't fully open due to safety. The heating is continuously on. She's in a first floor room, by unguarded on a narrow landing where a wheel chair cannot be manouvred. I've seen the food deliveries to the Home. Asda. For £228 a day, you can expect Asda weetabix, Asda apple juice, Asda ready meal for lunch, and Asda bread with Asda cheese or Asda ham for tea. Tea or coffee is of course, always Asda own brand. I'm not sure how the other £223 is accounted for. I was visiting once, and they asked if I would like lunch, as they were doing beefburgers. What I got was one of those microwave burgers. When she sits with other residents, she's sat with people who are all living in their own little worlds. There is no social interaction; the staff try, but you won't be making friends with other people there. If you are lucky, you won't get a resident screaming and swearing in your face; I've seen that. I suppose they are in a safe environment.
A hangover from COVID is Discharge to Assess (D2A); someone goes into hospital, treated, and discharged basically to a care home to determine whether they can still go home (reduces bed blocking, it was a mechanism used to clear beds quickly). The system is rigged, with hospitals contriving to force relatives to accept a home, with threats to throw them out with no support, and often, if an elderly patient is involved, not including the patient in discussions. I was given about 1 hour to make a decision when offered a particular care home that had a vacancy. Its not a lot of time to consult other siblings, figure out where this place was, read assessment reports.
She ended up in the home following D2A. There is supposed to be a 2 week assessment, to determine the next step, ie to go home. The system is clogged because of discharges from the hospitals, so a 2 week assessment turns into 4 weeks, 6 weeks. The assessment is broad ranging and seems set up to actually preclude a patient going home. The longer an elderly patient is in a home, the more instutionalised they become.
My mum has been there for 6 months now. In theory, she is receiving continuing nursing care to get her better, to get home. In reality, none of that is happening. She can no longer get in her wheelchair. Increased fraility from being left in bed means she has had only bed baths for 7 months, and now she is no longer safe to sit in her wheelchair (decline in core strength). A GP calls to the home once a week, he's seen her twice, but only because I insisted on it. This is a good home, but even so, last week she ended up with a 13cm scald on her leg. The home says they are mystified how it happened, but from what my mother said, it appeared to arise from an act of stupidity (a plastic mug of hot tea was too hot for the carer to hold, so she put it in a glass mug to hold. Then she balanced the glass on the bed covers......).
I would do all I can to keep your parents in their home as long as possible. Carers can come a maximum of 4 times a day, and they are supposed to assist in doing the ordinary things in life; loading a washing machine, hanging out the washing, give the place a quick sweep, make snacks (but often not use a cooker). For AD, there are day groups. My dad would go out for the day, it'll cost £5, he get a nice lunch, and he come back full of it, because he had been chatting to people, often men of a similar age, with similar problems, but they talk about similar things. Mens Shed are good, but a lot closed following COVID. If you get the Adult Social Services FA done, that sets a cap on how much all of this will cost them, so then you can concentrate on getting all the support they need to help them stay in their home.
As far as financial support, forget it. The traditional charities are useless, or nearly. Both my parents were ex-Forces (medics) and during their service paid into Corps Associations. None of that benefited them later on in life. The Royal Legion offered to send a man 200 miles to put up a picture hook. BLESMA suggested wheelchair adventures. SIA just offered advice about how terrible life was in a wheelchair and no one cares. Help the Aged produce leaflets.
What you will find is none of it is patient centric. When a cardiologist recommends a pacemaker for a patient, they are not thinking what is best for the patient, they are instead following a care pathway. When a hospital discharges a patient (to whereever) its not based on what is best for the patient (its based on getting a bed back).
And thinking about what is best for your dad, keep his medication under review. My dad had a TIA years back, so his medication was a mix of statins and some other things, a bit of diazopam and anti-psychotics to control his mood, and some drugs that supposedly slow the AD. All of these come with various side effects, and when they combine, you get unpredictable synergistic effects. There were points that it was decided that keeping him on the cardio medication was of no real benefit to his quality of life.
A carehome eventually might be the only option, but don't rule out other options. And with AD, patients will have sudden drops. When my dad died, my mum deteriorated quickly; the year after he died, she was admitted to hospital 17 times, on 999s.
If your dad goes into a home, I don't think your mum will be charged anything until (if and when) she also goes into a care home. And if assets fall to less than £20k, they can't touch that anyhow. If they are making regular contributions to grandchildren (my mum and dad have direct debits to grand kids savings accounts), keep those going. We spoke to a solicitor about this; my parents wanted to pay for their grandson's school fees (there were sound reasons for this), and when my mother went into a carehome, my sister was alarmed that he might have to be removed from that school aged 15. Don't go down the Trust route. If a house is sold to fund a care home, the council cannot stop payments that were being regularly made before illness (eg, contributions to a cat home). For most people, the money is all gone in 5-6 years @£50k a year. Equity release is robbery. Councils might try "intentional deprivation", if they think there is some hookey about their finances.
I would be less focused on paying for your dad's spot in a home, and more thinking about your mother living alone; one way or the other, that will happen quickly. While it might seem she is struggling caring for your dad, taking that away from her might cause a dip. See if she can get more help, through more carers, day groups, day respite care. But every situation is different.
Distance is a problem. I'm lucky in that its only a 150 mile round trip for me. Is it an option for your parents to move in with you, or move closer?
We also made changes to the home to enable them to live downstairs. The costs of that building work, because it was justified due to illness and disability, was used in the financial assessment.
Brilliantly captured, this should be compulsory reading for everyone! Genuinely moving and expertly written, thank you.Mum suffered a spinal cord infarction in early 2017, and dad was diagnosed with AD a few months later while living alone, while mum was at the spinal unit in Sheffield "learning" about rest of life in a wheelchair.
They did well for a few years, caring for each other. Changes only followed a crisis; so a crisis resulted in carers to help mum in and out of bed, as dad could no longer manage it, and later another crisis, carers to help him.
Carers at home are a mixed bag; set your expectations low. They have little in the way of training, some will go the extra mile, most seem to be bone idle, and lack common sense. Really push things with their managers. The worst are those carers with a bit of nursing background. For one, if they are a qualified nurse, why are they a carer. One of my mum's carers was a Romanian A&E nurse, but he wasn't allowed to work in the NHS due to failure to complete an English test (his English was fine); his background lead him to step over a line in the tasks he could do as a carer, and what he couldn't, eg providing controlled medication. He got into a bit of a mess over it.
Adult Social Services Financial Assessement; most departments don't know their own process, and that you can claim for costs due to disability, but you MUST have receipts. eg that stair lift, if you paid for it yourself, then the cost divided by expected service life, the costs of servicing the stair lift, any aids you have to buy around the house, increased laundry costs (if not yet, your dad will end up increasing the laundry needed due to accidents).
When mum and dad were both still around, dad was on an army officer pension plus a NHS and a company pension, so was actually financially ok, mum is on a smaller pension. A financial assessment for each of them meant the household bills were split equally, which helped my mum on the lower pension, so her social care contribution was capped at £50 a week, but dad's was £500 a week.
There are two assessments for care; the first is how much care your dad needs and how much your mum needs. If your dad needs help getting up, he will need help getting to bed. This assessment is nothing to do with what they pay.
The Financial Assessment will determine their contribution. Care is billed at £50 per hour
The first FA they had worked outs reasonably. When my dad died, it all went wrong. When he died, my mum's income went up, because she inherited half his pensions. But on the other hand, her bills doubled (the house cost as much to heat with one person as two). I had expected that in the grand scheme, her contribution would go up a bit.
However, a frankly useless social worker helped my mum complete the assessment, and I was aghast to see her contribution go from £50 a week to £500, when her monthly income was less than £2500.
Eventually, through gathering evidence of the cost of her disability (if you are disabled, life is more expensive than if you are able bodied), I got that down to £120 a week. I had to instruct the council how to do their assessments. It worked.
I don't know how many years your dad has gone from his AD diagnosis. It is a terminal diagnosis, but the etiology differs in sufferers. Dad lasted 5 years from diagnosis, from the point when it was barely noticeable (he was still driving) to the point where his day was semi-comatose. 5-7 years is about average for AD. I had accepted that you cannot stop progression of AD.
I think the big mistake I made was in 2021, when I allowed him to go into respite care, while my mum needed a bit of hospitalisation. That 4 weeks saw him walk into the home, and for the first week, visitors were so impressed about how he was doing (dad made the effort), to the point when I came to collect him, he was in a semi-comatose state, wearing someone else's clothes, and had to left him into the car (and I made the mistake of bringing the MX5). He lasted about 4-6 weeks afterwards, never left bed again, but he died at home, in his sleep, and I think, reasonably content (he got to see all his family before he went), with me at his side. In a carehome, that never happens. Someone passes, by the time the family are contacted, the body is already at a funeral home, and the room is being readied for a new resident. Sometimes that can't be avoided.
The reason why he got into that state was a fall in the care home, which wasn't reported to the family. He was taken to cardiology, but then discharged back to the home. The cardiologist diagnosed heart failure and recommended a pace maker. My mother, a retired nurse, veto'd this. The consultant agreed there was no benefit. A majority of pacemakers are fitted to people with dementia, and all they do is to sustain the body, but not the mind, with obvious terrible outcomes.
My mistake was I should not have let him go into respite, but instead, should have been there with him , looked after him. The fall might well have happened anyway, though the GP said its common for people with AD and dementia, once in a carehome environment, to go rapidly down hill, once they don't have to do anything. At home, dad would always make an effort to hang out the laundry, make his bed, cut the grass, have a root around the fridge for a snack, in a place he knew well, his home. It kept him busy. Yes, he would make a pigs ear of the bed, the washing would end up on the grass, and odd things would end up in the fridge. But none of that mattered. I think his decline would have been slower, though not without its crisis moments. AD eventually affects the autonomic system; how the heart is controlled. When my dad died, while he might not have recognised everyone, he remembered everyone. Some poor sods end their lives forgotting they had any kids at all (my grand dad), and they end their days in distress. He ended his days quietely. If he had died in a carehome, it would have been an ordinary, unremarkable event in that setting.
I'm glad for my dad that he died at home, and not on a hospital ward with tubes hanging out of his side being treated for some hospital acquired infection.
Now to my mother. She is now in a nursing home, with full continuous healthcare for the forseable, which means her home doesn't need to be sold, and now it sits empty, with me wondering what to do with it (I have full LPA), and what to do with a lifetime of things.
Nursing homes versus "care"/residential homes. What home your dad can go to depends on his needs. You will find there are not as many vacancies as you think, even less if your dad has nursing needs. You will be asked to make a decision rather quickly. What's most important to you; for dad to be near mum, be near to you, or what's best for him. The requirements will likely not coincide.
The care home my dad was in for respite looked superficially ok. But you soon notice a low ratio of staff. The old battered furniture. The room they used for my dad seemed to be more like a store room, next to laundry, away from other bedrooms, and windowless. The carers seemed to be surly older women, no men I noticed.
Where my mum is, is completely different. There is a better ratio of carers, they seem to be younger (mostly filipino and Zimbabwaen, and full of beans, with a few men on hand, to handle the blokes, and to do the heavy lifting when needed). But this was through pure luck. But even though it looks much better than other places, I can still find things to gripe about. The cost is £1600 per week. For that she gets a small room with a 20 year old Sony TV, with missing remote. So she is stuck watching horse racing all day. The windows don't fully open due to safety. The heating is continuously on. She's in a first floor room, by unguarded on a narrow landing where a wheel chair cannot be manouvred. I've seen the food deliveries to the Home. Asda. For £228 a day, you can expect Asda weetabix, Asda apple juice, Asda ready meal for lunch, and Asda bread with Asda cheese or Asda ham for tea. Tea or coffee is of course, always Asda own brand. I'm not sure how the other £223 is accounted for. I was visiting once, and they asked if I would like lunch, as they were doing beefburgers. What I got was one of those microwave burgers. When she sits with other residents, she's sat with people who are all living in their own little worlds. There is no social interaction; the staff try, but you won't be making friends with other people there. If you are lucky, you won't get a resident screaming and swearing in your face; I've seen that. I suppose they are in a safe environment.
A hangover from COVID is Discharge to Assess (D2A); someone goes into hospital, treated, and discharged basically to a care home to determine whether they can still go home (reduces bed blocking, it was a mechanism used to clear beds quickly). The system is rigged, with hospitals contriving to force relatives to accept a home, with threats to throw them out with no support, and often, if an elderly patient is involved, not including the patient in discussions. I was given about 1 hour to make a decision when offered a particular care home that had a vacancy. Its not a lot of time to consult other siblings, figure out where this place was, read assessment reports.
She ended up in the home following D2A. There is supposed to be a 2 week assessment, to determine the next step, ie to go home. The system is clogged because of discharges from the hospitals, so a 2 week assessment turns into 4 weeks, 6 weeks. The assessment is broad ranging and seems set up to actually preclude a patient going home. The longer an elderly patient is in a home, the more instutionalised they become.
My mum has been there for 6 months now. In theory, she is receiving continuing nursing care to get her better, to get home. In reality, none of that is happening. She can no longer get in her wheelchair. Increased fraility from being left in bed means she has had only bed baths for 7 months, and now she is no longer safe to sit in her wheelchair (decline in core strength). A GP calls to the home once a week, he's seen her twice, but only because I insisted on it. This is a good home, but even so, last week she ended up with a 13cm scald on her leg. The home says they are mystified how it happened, but from what my mother said, it appeared to arise from an act of stupidity (a plastic mug of hot tea was too hot for the carer to hold, so she put it in a glass mug to hold. Then she balanced the glass on the bed covers......).
I would do all I can to keep your parents in their home as long as possible. Carers can come a maximum of 4 times a day, and they are supposed to assist in doing the ordinary things in life; loading a washing machine, hanging out the washing, give the place a quick sweep, make snacks (but often not use a cooker). For AD, there are day groups. My dad would go out for the day, it'll cost £5, he get a nice lunch, and he come back full of it, because he had been chatting to people, often men of a similar age, with similar problems, but they talk about similar things. Mens Shed are good, but a lot closed following COVID. If you get the Adult Social Services FA done, that sets a cap on how much all of this will cost them, so then you can concentrate on getting all the support they need to help them stay in their home.
As far as financial support, forget it. The traditional charities are useless, or nearly. Both my parents were ex-Forces (medics) and during their service paid into Corps Associations. None of that benefited them later on in life. The Royal Legion offered to send a man 200 miles to put up a picture hook. BLESMA suggested wheelchair adventures. SIA just offered advice about how terrible life was in a wheelchair and no one cares. Help the Aged produce leaflets.
What you will find is none of it is patient centric. When a cardiologist recommends a pacemaker for a patient, they are not thinking what is best for the patient, they are instead following a care pathway. When a hospital discharges a patient (to whereever) its not based on what is best for the patient (its based on getting a bed back).
And thinking about what is best for your dad, keep his medication under review. My dad had a TIA years back, so his medication was a mix of statins and some other things, a bit of diazopam and anti-psychotics to control his mood, and some drugs that supposedly slow the AD. All of these come with various side effects, and when they combine, you get unpredictable synergistic effects. There were points that it was decided that keeping him on the cardio medication was of no real benefit to his quality of life.
A carehome eventually might be the only option, but don't rule out other options. And with AD, patients will have sudden drops. When my dad died, my mum deteriorated quickly; the year after he died, she was admitted to hospital 17 times, on 999s.
If your dad goes into a home, I don't think your mum will be charged anything until (if and when) she also goes into a care home. And if assets fall to less than £20k, they can't touch that anyhow. If they are making regular contributions to grandchildren (my mum and dad have direct debits to grand kids savings accounts), keep those going. We spoke to a solicitor about this; my parents wanted to pay for their grandson's school fees (there were sound reasons for this), and when my mother went into a carehome, my sister was alarmed that he might have to be removed from that school aged 15. Don't go down the Trust route. If a house is sold to fund a care home, the council cannot stop payments that were being regularly made before illness (eg, contributions to a cat home). For most people, the money is all gone in 5-6 years @£50k a year. Equity release is robbery. Councils might try "intentional deprivation", if they think there is some hookey about their finances.
I would be less focused on paying for your dad's spot in a home, and more thinking about your mother living alone; one way or the other, that will happen quickly. While it might seem she is struggling caring for your dad, taking that away from her might cause a dip. See if she can get more help, through more carers, day groups, day respite care. But every situation is different.
Distance is a problem. I'm lucky in that its only a 150 mile round trip for me. Is it an option for your parents to move in with you, or move closer?
We also made changes to the home to enable them to live downstairs. The costs of that building work, because it was justified due to illness and disability, was used in the financial assessment.
We went through the Continuing Healthcare routine with my FIL.
Followed (to the letter) everything in the ebook available on this site...
https://caretobedifferent.co.uk/product/how-to-get...
It's a complete minefield and pretty much no one involved in your case will admit to knowing anything about the process so you'll need to guide them through it.
One important piece of advice from the book - NEVER tell social services about finances until they've followed the process. You might be able to get the social care team on your side with the CHC assessments if they think they'll be paying for the social care.
Also, don't let anyone tell you that your parents won't pass the assessment before actually doing it. The thing that they conveniently forget is that they have to consider the compound impacts of different issues. i.e. you can't get out of bed as you're a fall risk. This, coupled with incontinence means that serious bed sores are a risk and push the CHC scores over the line. Individually, they wouldn't be enough but together they are. Unfortunately, points win prizes!
Worked in our case. £1,100 a week care package all rightly paid for by the NHS. This was for in-home carers but care home fees would have also been covered had he needed to go into a home before he passed away.
I would be more than happy to explain in more detail our experiences. I also have a copy of the ebook I can share but I actually think it deserves to be paid for.
Followed (to the letter) everything in the ebook available on this site...
https://caretobedifferent.co.uk/product/how-to-get...
It's a complete minefield and pretty much no one involved in your case will admit to knowing anything about the process so you'll need to guide them through it.
One important piece of advice from the book - NEVER tell social services about finances until they've followed the process. You might be able to get the social care team on your side with the CHC assessments if they think they'll be paying for the social care.
Also, don't let anyone tell you that your parents won't pass the assessment before actually doing it. The thing that they conveniently forget is that they have to consider the compound impacts of different issues. i.e. you can't get out of bed as you're a fall risk. This, coupled with incontinence means that serious bed sores are a risk and push the CHC scores over the line. Individually, they wouldn't be enough but together they are. Unfortunately, points win prizes!
Worked in our case. £1,100 a week care package all rightly paid for by the NHS. This was for in-home carers but care home fees would have also been covered had he needed to go into a home before he passed away.
I would be more than happy to explain in more detail our experiences. I also have a copy of the ebook I can share but I actually think it deserves to be paid for.
Edited by Paulsd on Thursday 9th May 08:21
Edited by Paulsd on Thursday 9th May 08:26
OP, sorry to hear about your Parents issues.
There have already been some excellent points made.
I was LPA for a relative and also experienced similar issues with my MIL and I found social services absolutely appalling and no help whatsoever so much so that I ended up speaking to both Councils CEO and then Head of Finance.
If your Mother is living in the house the Council cannot make her sell it to provide any part of your Fathers costs in a care home but they can “ insist “ on money in excess of that £23k be used to defray costs.
How long this takes you to sort may of course be some considerable time !
If your ownership percentages have been established for a long while this will also make it difficult for them to do anything about it.
In my relatives case I had to sell her house but managed to get the Council to in effect pay the costs for 12 months first and then managed subsequently to get them to agree to waive thIs.
The care home were very supportive throughout.
In my MIL ‘s case sadly she passed away during the argument to send her home !
Best of luck.
There have already been some excellent points made.
I was LPA for a relative and also experienced similar issues with my MIL and I found social services absolutely appalling and no help whatsoever so much so that I ended up speaking to both Councils CEO and then Head of Finance.
If your Mother is living in the house the Council cannot make her sell it to provide any part of your Fathers costs in a care home but they can “ insist “ on money in excess of that £23k be used to defray costs.
How long this takes you to sort may of course be some considerable time !
If your ownership percentages have been established for a long while this will also make it difficult for them to do anything about it.
In my relatives case I had to sell her house but managed to get the Council to in effect pay the costs for 12 months first and then managed subsequently to get them to agree to waive thIs.
The care home were very supportive throughout.
In my MIL ‘s case sadly she passed away during the argument to send her home !
Best of luck.
Paulsd said:
We went through the Continuing Healthcare routine with my FIL.
Followed (to the letter) everything in the ebook available on this site...
https://caretobedifferent.co.uk/product/how-to-get...
It's a complete minefield and pretty much no one involved in your case will admit to knowing anything about the process so you'll need to guide them through it.
One important piece of advice from the book - NEVER tell social services about finances until they've followed the process. You might be able to get the social care team on your side with the CHC assessments if they think they'll be paying for the social care.
Also, don't let anyone tell you that your parents won't pass the assessment before actually doing it. The thing that they conveniently forget is that they have to consider the compound impacts of different issues. i.e. you can't get out of bed as you're a fall risk. This, coupled with incontinence means that serious bed sores are a risk and push the CHC scores over the line. Individually, they wouldn't be enough but together they are. Unfortunately, points win prizes!
Worked in our case. £1,100 a week care package all rightly paid for by the NHS. This was for in-home carers but care home fees would have also been covered had he needed to go into a home before he passed away.
I would be more than happy to explain in more detail our experiences. I also have a copy of the ebook I can share but I actually think it deserves to be paid for.
Just seen this post whilst I was typing. Followed (to the letter) everything in the ebook available on this site...
https://caretobedifferent.co.uk/product/how-to-get...
It's a complete minefield and pretty much no one involved in your case will admit to knowing anything about the process so you'll need to guide them through it.
One important piece of advice from the book - NEVER tell social services about finances until they've followed the process. You might be able to get the social care team on your side with the CHC assessments if they think they'll be paying for the social care.
Also, don't let anyone tell you that your parents won't pass the assessment before actually doing it. The thing that they conveniently forget is that they have to consider the compound impacts of different issues. i.e. you can't get out of bed as you're a fall risk. This, coupled with incontinence means that serious bed sores are a risk and push the CHC scores over the line. Individually, they wouldn't be enough but together they are. Unfortunately, points win prizes!
Worked in our case. £1,100 a week care package all rightly paid for by the NHS. This was for in-home carers but care home fees would have also been covered had he needed to go into a home before he passed away.
I would be more than happy to explain in more detail our experiences. I also have a copy of the ebook I can share but I actually think it deserves to be paid for.
Edited by Paulsd on Thursday 9th May 08:21
Edited by Paulsd on Thursday 9th May 08:26
Agree that it is an excellent read and could be most helpful.
The book is around £60 and if it helps in conversations a price worth paying.
I had started to use the continuing care assessments in my argument with the various authorities in my MIL ‘s case but unfortunately as above she passed away before I could get into my stride.
Risonax said:
Mixed experiences. Apologies if this is a long reply.
Wow, this is pretty much exactly what we're going through, just a few steps behind. The MIL has dementia, and she now has a 20/30 second memory at best. You're not even finished answering whatever question she's just asked and she asks it again. FIL has just had a knee replacement and she was in respite for a week, and we've picked her up wearing someone else's socks and undies. It's properly taken a toll on him, he's not really equipped for this but his pride forces him and he's now just a mess.They are living with us while she recovers, and while there are funny moments god it's bleak. I don't wish this on anyone.
Having just gone through all this with mum - I really wish we’d taken more advice.
Mum has been in a home since last August - placed there for 4 weeks by the LA for assessment after a number of hospital stays.
She’s 74 and her body has physically given up. She’s only 38kg and cannot support her own weight or do anything for herself anymore. Her mind is absolutely fine (which makes it harder for her).
LA put her into a BUPA home and covered the assessment period. She grew to like it so we used her savings to fund her through to Christmas.
It took till January for the LA to send out someone to discuss finances and they were unkind, uncaring and had pretty much no advice to give other than selling mums house to fund ongoing care.
We completed this week which has meant my sister and me paying the home ourselves since January- it’s a little bit over £6k per month.
Mums change in circumstances happened relatively quickly so we never had the opportunity to put the house in trust - pretty much half a million which will get eaten away by the LA in a home that that put her in but have only recently admitted they would never fund themselves.
Mum is incredibly upset about what’s happening and more so that she worked so hard for so long to give me and my sister something that will no longer happen.
The LA have pretty much said that now the house is sold, they need every bit of expenditure from her account to be noted and kept for when the money runs out (around 5 years) and that’s it. No further advice.
We are at a bit of a loss about what is allowed beyond reasonable living costs and don’t know who to turn to.
Financial POA is being processed but is taking a long time.
I’m now aware that there were other options but none of these were presented by the LA at any time.
Mum has been in a home since last August - placed there for 4 weeks by the LA for assessment after a number of hospital stays.
She’s 74 and her body has physically given up. She’s only 38kg and cannot support her own weight or do anything for herself anymore. Her mind is absolutely fine (which makes it harder for her).
LA put her into a BUPA home and covered the assessment period. She grew to like it so we used her savings to fund her through to Christmas.
It took till January for the LA to send out someone to discuss finances and they were unkind, uncaring and had pretty much no advice to give other than selling mums house to fund ongoing care.
We completed this week which has meant my sister and me paying the home ourselves since January- it’s a little bit over £6k per month.
Mums change in circumstances happened relatively quickly so we never had the opportunity to put the house in trust - pretty much half a million which will get eaten away by the LA in a home that that put her in but have only recently admitted they would never fund themselves.
Mum is incredibly upset about what’s happening and more so that she worked so hard for so long to give me and my sister something that will no longer happen.
The LA have pretty much said that now the house is sold, they need every bit of expenditure from her account to be noted and kept for when the money runs out (around 5 years) and that’s it. No further advice.
We are at a bit of a loss about what is allowed beyond reasonable living costs and don’t know who to turn to.
Financial POA is being processed but is taking a long time.
I’m now aware that there were other options but none of these were presented by the LA at any time.
pidsy said:
Having just gone through all this with mum - I really wish we’d taken more advice.
Mum has been in a home since last August - placed there for 4 weeks by the LA for assessment after a number of hospital stays.
She’s 74 and her body has physically given up. She’s only 38kg and cannot support her own weight or do anything for herself anymore. Her mind is absolutely fine (which makes it harder for her).
LA put her into a BUPA home and covered the assessment period. She grew to like it so we used her savings to fund her through to Christmas.
It took till January for the LA to send out someone to discuss finances and they were unkind, uncaring and had pretty much no advice to give other than selling mums house to fund ongoing care.
We completed this week which has meant my sister and me paying the home ourselves since January- it’s a little bit over £6k per month.
Mums change in circumstances happened relatively quickly so we never had the opportunity to put the house in trust - pretty much half a million which will get eaten away by the LA in a home that that put her in but have only recently admitted they would never fund themselves.
Mum is incredibly upset about what’s happening and more so that she worked so hard for so long to give me and my sister something that will no longer happen.
The LA have pretty much said that now the house is sold, they need every bit of expenditure from her account to be noted and kept for when the money runs out (around 5 years) and that’s it. No further advice.
We are at a bit of a loss about what is allowed beyond reasonable living costs and don’t know who to turn to.
Financial POA is being processed but is taking a long time.
I’m now aware that there were other options but none of these were presented by the LA at any time.
This is exactly what they do, they are not to be trusted. They are just asset strippers putting you on an emotional guilt trip so you sign up, it is nothing short of financial fraud and they have basically stolen any inheritance you might have received.Mum has been in a home since last August - placed there for 4 weeks by the LA for assessment after a number of hospital stays.
She’s 74 and her body has physically given up. She’s only 38kg and cannot support her own weight or do anything for herself anymore. Her mind is absolutely fine (which makes it harder for her).
LA put her into a BUPA home and covered the assessment period. She grew to like it so we used her savings to fund her through to Christmas.
It took till January for the LA to send out someone to discuss finances and they were unkind, uncaring and had pretty much no advice to give other than selling mums house to fund ongoing care.
We completed this week which has meant my sister and me paying the home ourselves since January- it’s a little bit over £6k per month.
Mums change in circumstances happened relatively quickly so we never had the opportunity to put the house in trust - pretty much half a million which will get eaten away by the LA in a home that that put her in but have only recently admitted they would never fund themselves.
Mum is incredibly upset about what’s happening and more so that she worked so hard for so long to give me and my sister something that will no longer happen.
The LA have pretty much said that now the house is sold, they need every bit of expenditure from her account to be noted and kept for when the money runs out (around 5 years) and that’s it. No further advice.
We are at a bit of a loss about what is allowed beyond reasonable living costs and don’t know who to turn to.
Financial POA is being processed but is taking a long time.
I’m now aware that there were other options but none of these were presented by the LA at any time.
FMOB said:
This is exactly what they do, they are not to be trusted. They are just asset strippers putting you on an emotional guilt trip so you sign up, it is nothing short of financial fraud and they have basically stolen any inheritance you might have received.
Why should the state pay for an elderly person's care in order to preserve an inheritance for someone else?Olivera said:
FMOB said:
This is exactly what they do, they are not to be trusted. They are just asset strippers putting you on an emotional guilt trip so you sign up, it is nothing short of financial fraud and they have basically stolen any inheritance you might have received.
Why should the state pay for an elderly person's care in order to preserve an inheritance for someone else?Edited by Bonefish Blues on Sunday 12th May 15:44
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