Exploring care home options

[NickP]

I'd really welcome people's experiences and views about the move towards residential care... my dad has Alzheimer's and my mum cares for him at home. I live about an hour away so am not much help day to day, but go up weekly and do most of the phoning/ sorting of things! Mum is finding it increasingly difficult to cope and we are all very concerned about it making her unwell(they are both 78). Mum has three x 2.5 hour sessions a week where a carer comes and takes dad out. He does not yet require personal care (toileting etc). In January, I arranged a carer to come and do 'live in' respite for a week (in their own home) and they had to bring in extra carers as "it isn't a job for one person!" This was mainly to give the carer a break each day (legal requirement but impossible with dad unsupervised as he is constantly on the go)The care manager suggested afterwards that respite in future may be better in a care setting as there would be a team of people and its a more secure environment etc.
So, we are looking at care homes (for respite and eventually residential).
Dad has no short term memory (a few minutes at most), he frequently thinks mum is his mother, constantly looks for/ asks for him mother, doesn't know their home is theirs and asks when they are going home, knows that he knows me but doesn't really know who I am, has started putting clothes on in the wrong order, has to be told every day how to have a shower/ clean his teeth, constantly paces and picks at his fingers, constantly wants to go out etc... he does still go to the toilet himself, and has embedded social skills that mask the extent of his difficulties at times.
Are we right to be going down the residential care path, or is it too soon? - care homes seem surprised by his age and toileting.
How do people navigate the nightmare that is social care funding (parents have less than £23000 in savings but do have a house that could be sold to self fund)
If social care offer some funding, can mum and dad 'top it up' to cover costs of a 'nicer' home or does it have to be someone else?
Is the deferred payment thing possible - where he goes into a care home, then they sell the house and pay the council back then?
Sorry this is so long - I have read lots of info, but just can't seem to find anyone to really help me get my head around these issues, and feel like I'm going round in circles!!! Thank you.

 

[Izzy]

I’m sure others will share their personal experiences with you soon but I wondered if thsee would be of any help - sorry - just another suggestion for something to read!

Care homes: When is the right time and who decides?

Advice and practical tips for carers on when is the right time for a person to be moved to a care home.

www.alzheimers.org.uk

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

 

[Grannie G]

Hello @NickP

It sounds as if your dad does need 24.7 care which is provided by you and your mum at the moment with input from a carer.

If it is not yet the right time for residential care. it is likely to
be very soon so better to start your research now.

The first step is to apply for financial assessment by Social Services.
Your parents will not have to sell their house as long as your mother lives in it. If she sold to downsize, then social services could ask for half the excess funds towards your dad`s care.

Your parents will be expected to pay towards your dad`s care until their savings reach [ I think] £14,500

Financial assessment (means test) for social care - Social care and support guide

A financial assessment (also known as a means test) is an assessment to decide if your council will pay towards your care and support.

www.nhs.uk

When looking for care homes, there is nothing better than personal visits in addition to CQC ratings

 

[SAP]

I think the time to go in to residential care depends on a lot of individual circumstances. It also depends on the level of your dad’s mental capacity. If he still has capacity and does not want to be in a home it could be an issue.
My mum went into residential care in much the same situation as your dad in that she was still very physically fit and able to self care but she was on her own and things were getting dangerous but most importantly she no longer was considered to have mental capacity ( by a social worker and by an OT)
It could be that your mum is doing a lot more than she realises for him.
Your first step would be to ask social services for an assessment of his needs and they will do a financial assessment at the same time. If your parents have joint savings, then only half of this would be counted as your dad’s . The house would not be counted as your mum still lives in it. Any income that your dad has will also be counted. So there should be no rush to sell the house to pay for care.
The following link explains this well.

Do I have to sell my home to pay for care? | Age UK

We explain the means test and property and when you have to sell your home to pay for care. Find out more information from Age UK. Read now.

www.ageuk.org.uk

If social services are going to pay anything, they will probably go down the route of 4 carers a day first then at care homes. You are at their mercy with choice but the family can top up the fees if they wish. Be careful though as a “nicer” care home may not necessarily be the best one for your dad so research thoroughly.
Yes some councils will agree a deferred payment but if the house is sold to pay for care, where will your mum live?
It’s a lot to wade through but there is plenty of good support on here. Get him assessed first and see what happens after that.

 

[northumbrian_k]

Hi @NickP. My experience as sole carer for my wife was firstly to arrange some respite stays (4-10 days) to give me a break from 24 hour caring. This gave me the courage to consider residential care on a full time basis. I started to look at homes and soon found that 'nicer', so-called luxury homes did not necessarily offer the level of service and support that my wife needed. I chose a home that was more domestic in scale, perhaps a little frayed at the edges, and with the most convincing description of personalised care. Happily, almost 4 years on, the home has more than met what I hoped for and my wife is safe, loved and content.

Initially she had sufficient capital to be self-funding so the local authority financial assessment was limited to ascertaining that fact. Later, as her funds fell towards the upper threshold, a full financial assessment established how much she would contribute (from her pensions), with the council picking up the remaining, larger share.

It is important to note that your parents' house will be disregarded from any financial assessment while your mother still lives there. Only income and capital that can be ascribed as belonging to your dad (including a share of any joint accounts) should be considered in the financial assessment.

Unfortunately, from your description, it does seem as though your dad's needs are becoming too great to be managed at home. Admission to a suitable care home could benefit both of your parents and you too.

 

[NickP]

I’m sure others will share their personal experiences with you soon but I wondered if thsee would be of any help - sorry - just another suggestion for something to read!

Care homes: When is the right time and who decides?

Advice and practical tips for carers on when is the right time for a person to be moved to a care home.

www.alzheimers.org.uk

Paying for dementia care in England

Dementia care isn't free, and you may need to pay for some of the care you or someone you know needs. We help you understand the different ways to pay for care, and the amount you might be expected to pay.

www.alzheimers.org.uk

Hello @NickP

It sounds as if your dad does need 24.7 care which is provided by you and your mum at the moment with input from a carer.

If it is not yet the right time for residential care. it is likely to
be very soon so better to start your research now.

The first step is to apply for financial assessment by Social Services.
Your parents will not have to sell their house as long as your mother lives in it. If she sold to downsize, then social services could ask for half the excess funds towards your dad`s care.

Your parents will be expected to pay towards your dad`s care until their savings reach [ I think] £14,500

Financial assessment (means test) for social care - Social care and support guide

A financial assessment (also known as a means test) is an assessment to decide if your council will pay towards your care and support.

www.nhs.uk

When looking for care homes, there is nothing better than personal visits in addition to CQC ratings

Many thanks @Grannie G - this is what I thought, but so helpful to have someone spell it out in clear steps!

 

[NickP]

I think the time to go in to residential care depends on a lot of individual circumstances. It also depends on the level of your dad’s mental capacity. If he still has capacity and does not want to be in a home it could be an issue.
My mum went into residential care in much the same situation as your dad in that she was still very physically fit and able to self care but she was on her own and things were getting dangerous but most importantly she no longer was considered to have mental capacity ( by a social worker and by an OT)
It could be that your mum is doing a lot more than she realises for him.
Your first step would be to ask social services for an assessment of his needs and they will do a financial assessment at the same time. If your parents have joint savings, then only half of this would be counted as your dad’s . The house would not be counted as your mum still lives in it. Any income that your dad has will also be counted. So there should be no rush to sell the house to pay for care.
The following link explains this well.

Do I have to sell my home to pay for care? | Age UK

We explain the means test and property and when you have to sell your home to pay for care. Find out more information from Age UK. Read now.

www.ageuk.org.uk

If social services are going to pay anything, they will probably go down the route of 4 carers a day first then at care homes. You are at their mercy with choice but the family can top up the fees if they wish. Be careful though as a “nicer” care home may not necessarily be the best one for your dad so research thoroughly.
Yes some councils will agree a deferred payment but if the house is sold to pay for care, where will your mum live?
It’s a lot to wade through but there is plenty of good support on here. Get him assessed first and see what happens after that.

Thank you @SAP - this is really helpful. I hadn't seen that particular Age UK article. Also, helpful to know that Social Care start offers with in home care. Do you know if mum and dad can top the fees up themselves, or does it have to be a 3rd party (ie compeltely separate from their household)?
I have started visiting care homes - you are so right... there are some that are like hotels, but not convinced they are as caring as some of the smaller ones that are more like a home. Will keep visiting!
Mum and Dad have a large house, so if it was sold, mum would certainly downsize. She wants to come and live nearer me, which makes a lot of sense - that would release funds for paying for care and give her a good sized 'retirment' home to live in.
Thank you so much for taking the time to reply.

 

[NickP]

Hi @NickP. My experience as sole carer for my wife was firstly to arrange some respite stays (4-10 days) to give me a break from 24 hour caring. This gave me the courage to consider residential care on a full time basis. I started to look at homes and soon found that 'nicer', so-called luxury homes did not necessarily offer the level of service and support that my wife needed. I chose a home that was more domestic in scale, perhaps a little frayed at the edges, and with the most convincing description of personalised care. Happily, almost 4 years on, the home has more than met what I hoped for and my wife is safe, loved and content.

Initially she had sufficient capital to be self-funding so the local authority financial assessment was limited to ascertaining that fact. Later, as her funds fell towards the upper threshold, a full financial assessment established how much she would contribute (from her pensions), with the council picking up the remaining, larger share.

It is important to note that your parents' house will be disregarded from any financial assessment while your mother still lives there. Only income and capital that can be ascribed as belonging to your dad (including a share of any joint accounts) should be considered in the financial assessment.

Unfortunately, from your description, it does seem as though your dad's needs are becoming too great to be managed at home. Admission to a suitable care home could benefit both of your parents and you too.

Thank you so much for your reply @northumbrian_k - I really appreciate you sharing your experience with your wife and your own circumstances. I have only just started visiting care homes, and I have alrady noticed that the luxury places are a bit corporate... your advice about the smaller, more homely ones is really helpful.
The info about funding is also great - I wish I'd asked on here sooner and not left myself going round in circles for as long!
Thanks too for the rassurance that we are not completely wrong in our planning for residential care - I question myself all the time, it's so hard. To hear from others who have had similar experiences really is so valuable. Thank you for taking the time to reply.

 

[Suzysheep01]

My mum is also 78 and has the same symptoms as your dad. I felt bad when the care homes commented on how young she was to be in a home. Unfortunately my mum is a type 1 diabetic on insulin injections and was forgetting to inject etc. she has now forgotten how to inject.
look around as many as you can and read reviews on carehome.co.uk.

 

[Muttimuggle]

My mother went into Residential care last year. I had initially presumed that as she had a dementia diagnosis, a Dementia home would be necessary. Not so. It seems that, at least in my mother's rather modest and plain but very caring home(not top of the budget either), as long as residents are not presenting with difficult or challenging behaviour they can stay there. Actually most residents seem to have dementia. It really is well worth phoning checking the CQCs of, visiting(more than once if necessary), as many as possible. I thought I would never come to a decision and had looked at dementia and residential mixes but this one was just right. I am pleasantly surprised at how my mother settled although part of the battle was won because she fell down the stairs and broke her hip and didn't think she could cope living alone any more. It was so stressful for me before all this happened - I was continually visiting and sorting out the many problems which arose including keeping an eye on the care agency who came twice a day and getting in Mum's shopping. It was a relief....and I am sure it would be for your mum too. Perhaps you could tell a few little love lies about the need for a little convalescence in or a little break with meals laid on before you prepare him for a trial respite time somewhere.

 

[try again]

Will you be wanting to move him to a home near you?

 

[Serenade]

I think Mixed care home homes can be ok, but the problem I have found is the lack of support for the PWD - unless they are in individual wards(smaller sections) rather than being grouped alltogether. I would say my my mum had mild dementia when she went in 4 months ago(needed help with personal care, medication) BUT now after 4 months she is full on emotional wreck - due to lack of emotional support an staff unable to give her 1-1 attention, the care home saying they can cope but clearly they can't and we are desperate to get her out.

We really wanted mum near us, but now looking realise the right care home is number one and that includes one with dementia specialism.

 

[try again]

I think Mixed care home homes can be ok, but the problem I have found is the lack of support for the PWD - unless they are in individual wards(smaller sections) rather than being grouped alltogether. I would say my my mum had mild dementia when she went in 4 months ago(needed help with personal care, medication) BUT now after 4 months she is full on emotional wreck - due to lack of emotional support an staff unable to give her 1-1 attention, the care home saying they can cope but clearly they can't and we are desperate to get her out.

We really wanted mum near us, but now looking realise the right care home is number one and that includes one with dementia specialism.

Yes I found this. The horror mum was discharged to had about 60 residents all mixing together in too little lounge space. Those that shouted loudest (and there were a few of those) had all the attention, leaving the silent minority just left silently. She's now in a place with 4 separate wings of 14 residents and so much more calming and caring.

 

[Imperfect Daughter]

Hi @NickP , I think you've had good advice above re funding so I won't add to that.
What I will say, is that now is absolutely the right time to look at residential care.
What you don't want, is to wait for a crisis to happen and then be pushed into finding somewhere at short notice, which has happened to many people here including me. I won't go into the long story but I ended up with only 2 weeks to find her somewhere permanent, and I had to take what was available- the places that might have been more suitable for mum had no vacancies.
It's a big regret of mine. I knew she had dementia, so I should have been doing my research earlier. I naively thought that it would progress gradually and I've 'have time' to sort out residential care as her needs gradually changed. If I'd looked earlier, I could have got her on some waiting lists for somewhere smaller and less institutional (she ended up in a large care home with lots of strangers, corridors, and quite a formal 'lounge' for 40ish people, not really my mum's thing and she hated it).

If I were you I'd be looking now and getting your dad on some waiting lists even if you're not ready to move him straight away. Although to be honest it sounds like he is almost ready especially if your Mum is struggling. I wish you all the best, it's not an easy journey but you'll find this forum is a godsend.