Dad's late stage dementia

[natty66]

My dad has late stage vascular dementia and four serious life threatening health conditions controlled by about 12 drugs. He is paralysed except for movement in one arm which he uses for throwing things (he can't stand or sit up and had all his toes amputated after sepsis and gangrene). He's doubly incontinent and despite some speech therapy earlier this year he can barely express himself - two or three words - and is hard to hear and understand. Mum has done everything for him as she lives with him We are all exhausted and this has been going on for years. We have three carers visits a day to wash and change dad's nappies - there is no time in the visit to do anything else. Everything else is done by mum/family including cooking, cleaning, shaving dad and mountains of washing. He hallucinates all day and becomes extremely aggressive and shouty and night, throwing things, reacting to the life he is living as real in his mind (he seems to travel a lot for be visiting his mum and dad).

Mum has to be at home for the carers, who due to other clients are often late, and also as the front door in her block doesn't open (always being repaired) and she has to go downstairs to let the carer in. Mum has to help the carer with washing, preparing kit etc. She has no time to leave the flat and no time or space for herself to recover. She goes out three times a week across the road for 40 mins to buy food. The family help but we find it challenging (I am a cancer patient). Naturally, mum's health is taking a serious hit too. We have raised this with the GP but they show little interest - they are okay on urine tests and managing dad's infections. Mum asked for advice on how to manage dad's aggressive behaviour at night and was told to chat on this forum. She wonders if there is gentle night time sedation - she is getting no sleep (it's a tiny flat) and she is scared, being on her own, and the neighbours have complained about the noise dad makes. We have asked for respite care and have been told it is limited to two hours in the day once a month - mum doesn't find that helpful. She needs a holiday but needs to know that reliable people who understand dementia and his other conditions are available, given dad's complicated drugs, and care requirements.

We have our bi-annual local authority carer's meeting next week. They are thinking of taking away some of the carer's support (it nearly happened last time). I feel it's time dad went into full time residential care. Mum has no assets but is terrified about the financial side (dad has a small private pension and mum has been trying to save to pay for basic funerals, but worries it will count against her - I told her not to worry). So far resisting this - but it can't go on as it is.

Any advice for what we can do at this meeting? Or how to progress residential care with the local authority? I think mum is worried she'll become homeless as all their pension income will go to this. They are in London. I have thought about paying for a week's respite care - (I don't have much money either), to try out a home to reassure everyone.

Many thanks, natty.

 

[canary]

Oh my goodness @natty66
I was reading your post and thinking, his poor wife, how is the family surviving?
This s way too much to deal with at home, I really do agree that he needs a care/nursing home where there is a whole team of people to look after him day and night.

Is the local authority carers meeting the same as a needs assessment conducted by Social Services? If not, you need to ask for one.
The family will have to be quite firm that you can no longer meet your dads needs - any sign of doubt will mean that SS will take this a a sign that all is well and everyone is coping. Think of all the things that your dad needs, but you are unable to meet. Lay these things on the line and also stress that your mums health is being affected, that she is scared of his aggression and the neighbours are complaining.

Where it comes to funding only your dads pensions and any savings over £14,000 (in his name only, or 50% of joint savings) will be taken into consideration - your mums pensions and savings will be left, as will her share of jointly held savings. The Local Authority will pay the rest (up to a certain limit). She can request half of his private pension, though not the state one. She may also become eligible for pension credit.

 

[luggy]

My dad has late stage vascular dementia and four serious life threatening health conditions controlled by about 12 drugs. He is paralysed except for movement in one arm which he uses for throwing things (he can't stand or sit up and had all his toes amputated after sepsis and gangrene). He's doubly incontinent and despite some speech therapy earlier this year he can barely express himself - two or three words - and is hard to hear and understand. Mum has done everything for him as she lives with him We are all exhausted and this has been going on for years. We have three carers visits a day to wash and change dad's nappies - there is no time in the visit to do anything else. Everything else is done by mum/family including cooking, cleaning, shaving dad and mountains of washing. He hallucinates all day and becomes extremely aggressive and shouty and night, throwing things, reacting to the life he is living as real in his mind (he seems to travel a lot for be visiting his mum and dad).

Mum has to be at home for the carers, who due to other clients are often late, and also as the front door in her block doesn't open (always being repaired) and she has to go downstairs to let the carer in. Mum has to help the carer with washing, preparing kit etc. She has no time to leave the flat and no time or space for herself to recover. She goes out three times a week across the road for 40 mins to buy food. The family help but we find it challenging (I am a cancer patient). Naturally, mum's health is taking a serious hit too. We have raised this with the GP but they show little interest - they are okay on urine tests and managing dad's infections. Mum asked for advice on how to manage dad's aggressive behaviour at night and was told to chat on this forum. She wonders if there is gentle night time sedation - she is getting no sleep (it's a tiny flat) and she is scared, being on her own, and the neighbours have complained about the noise dad makes. We have asked for respite care and have been told it is limited to two hours in the day once a month - mum doesn't find that helpful. She needs a holiday but needs to know that reliable people who understand dementia and his other conditions are available, given dad's complicated drugs, and care requirements.

We have our bi-annual local authority carer's meeting next week. They are thinking of taking away some of the carer's support (it nearly happened last time). I feel it's time dad went into full time residential care. Mum has no assets but is terrified about the financial side (dad has a small private pension and mum has been trying to save to pay for basic funerals, but worries it will count against her - I told her not to worry). So far resisting this - but it can't go on as it is.

Any advice for what we can do at this meeting? Or how to progress residential care with the local authority? I think mum is worried she'll become homeless as all their pension income will go to this. They are in London. I have thought about paying for a week's respite care - (I don't have much money either), to try out a home to reassure everyone.

Many thanks, natty.

Hello @natty66 my goodness, that sounds an awful lot for anyone to have to cope with and with so little support too. My heart goes out to you all.

Your dad's various health issues and associated complexities sound as if he may be eligible for NHS Continuing Healthcare. It's certainly worth exploring. Perhaps you could contact your dad's GP and request that a Checklist can be done? The Checklist will determine whether or not your dad is eligible for an NHS Continuing Healthcare assessment, and it is this which will decide whether or not your dad is eligible for NHS funding. Ideally, this assessment should be carried out before the Local Authority carries out a financial assessment.

The above is just a cursory explanation of how it works and I'm sure others on this forum, with more knowledge than myself, will be able to guide you in the right direction.

I agree with @canary who has suggested that the time is right for your dad to go into a care or nursing home. It would be in everyone's best interests.

I wish you the very best and hope that you can sort things out.

 

[smithdee]

My dad has late stage vascular dementia and four serious life threatening health conditions controlled by about 12 drugs. He is paralysed except for movement in one arm which he uses for throwing things (he can't stand or sit up and had all his toes amputated after sepsis and gangrene). He's doubly incontinent and despite some speech therapy earlier this year he can barely express himself - two or three words - and is hard to hear and understand. Mum has done everything for him as she lives with him We are all exhausted and this has been going on for years. We have three carers visits a day to wash and change dad's nappies - there is no time in the visit to do anything else. Everything else is done by mum/family including cooking, cleaning, shaving dad and mountains of washing. He hallucinates all day and becomes extremely aggressive and shouty and night, throwing things, reacting to the life he is living as real in his mind (he seems to travel a lot for be visiting his mum and dad).

Mum has to be at home for the carers, who due to other clients are often late, and also as the front door in her block doesn't open (always being repaired) and she has to go downstairs to let the carer in. Mum has to help the carer with washing, preparing kit etc. She has no time to leave the flat and no time or space for herself to recover. She goes out three times a week across the road for 40 mins to buy food. The family help but we find it challenging (I am a cancer patient). Naturally, mum's health is taking a serious hit too. We have raised this with the GP but they show little interest - they are okay on urine tests and managing dad's infections. Mum asked for advice on how to manage dad's aggressive behaviour at night and was told to chat on this forum. She wonders if there is gentle night time sedation - she is getting no sleep (it's a tiny flat) and she is scared, being on her own, and the neighbours have complained about the noise dad makes. We have asked for respite care and have been told it is limited to two hours in the day once a month - mum doesn't find that helpful. She needs a holiday but needs to know that reliable people who understand dementia and his other conditions are available, given dad's complicated drugs, and care requirements.

We have our bi-annual local authority carer's meeting next week. They are thinking of taking away some of the carer's support (it nearly happened last time). I feel it's time dad went into full time residential care. Mum has no assets but is terrified about the financial side (dad has a small private pension and mum has been trying to save to pay for basic funerals, but worries it will count against her - I told her not to worry). So far resisting this - but it can't go on as it is.

Any advice for what we can do at this meeting? Or how to progress residential care with the local authority? I think mum is worried she'll become homeless as all their pension income will go to this. They are in London. I have thought about paying for a week's respite care - (I don't have much money either), to try out a home to reassure everyone.

Many thanks, natty.

Hi @natty66 - I can totally relate to this post. I currently help my mum care for my dad when I can, but she's been doing it on her own for years. Unlike your mum, mine refuses any restbite etc, so other than carers for 30 mins in morning to wash/change dads pad and 15 mins at night to put him to bed, we are the only ones caring for him and it is exhausting. She also doesn't get out of the house as cares for him 24/7.
He's on medication called Mementine as he was also getting aggressive. GP has already recommended residential care home which I fully agree with at this point, but mum won't have it.
Sorry I can't offer any advice other than to keep supporting your mum. I hope things go well at your meeting.