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How long will we need a care home ?

FranL

Registered User
Jan 22, 2022
22
0
So having reached the difficult decision as a family that mum needs a proper dementia care home, we are now looking at funding. We think we have enough for 4-5 years before we come under the limit and the state starts contributing. Mum is lucky to have a good income which helps. She has vascular dementia which given her confused state, we think she may have had for 2 years. She also has frontotemporal dementia possibly Alzheimer’s variant. I find it difficult to discuss life expectancy but we have to consider this in our planning. Any thoughts would be helpful ☹️
 

canary

Registered User
Feb 25, 2014
18,895
0
South coast
Im afraid that time-lines with anything to do with dementia are impossible to say.

Statistically, the average stay in a care home is about 2 years, but this can range from the people who are moved to a care home for End of Life care and only live for a few weeks, to people who can live for many years (Im sure I read on here recently that someone said their mum was in a care home for 10 years). My mum lived for 3 years. I think having enough for 4-5 years is probably good enough.
 

MartinWL

Registered User
Jun 12, 2020
2,026
0
65
London
I thought the average length of stay in care homes was 18 months but it doesn't matter, the reality is that few residents spend 4 years in care homes. Some do, of course.
 

nitram

Registered User
Apr 6, 2011
25,508
0
North Manchester
You could try and come to an arrangement with the home that if your mum self funds for n years they will then accept LA rates without requiring a top up when funds run out.
 

FranL

Registered User
Jan 22, 2022
22
0
I thought the average length of stay in care homes was 18 months but it doesn't matter, the reality is that few residents spend 4 years in care homes. Some do, of course.
Thanks. My brother scoffed at me for thinking it would be 5 years ☹️
 

FranL

Registered User
Jan 22, 2022
22
0
You could try and come to an arrangement with the home that if your mum self funds for n years they will then accept LA rates without requiring a top up when funds run out.
Not sure this will work with the home in question. But my son wants her to go there while she is still aware of her surroundings as it is lovely! We can always top up.
 

FranL

Registered User
Jan 22, 2022
22
0
Im afraid that time-lines with anything to do with dementia are impossible to say.

Statistically, the average stay in a care home is about 2 years, but this can range from the people who are moved to a care home for End of Life care and only live for a few weeks, to people who can live for many years (Im sure I read on here recently that someone said their mum was in a care home for 10 years). My mum lived for 3 years. I think having enough for 4-5 years is probably good enough.
Thank you. That is really helpful. I guess I have to face reality. Just finding it hard. She is tough old boot though 😂
 

Violet Jane

Registered User
Aug 23, 2021
899
0
My mother was diagnosed with Alzheimer’s Disease when she was 80. She was otherwise very healthy. She moved into a care home at 83 and lived there for just over four years.

I have read that the average length of stay in a care home for people with dementia is two years but whether this statistic is skewed by people living in care homes for very short periods of time I do not know.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,464
0
Newcastle
I don't know about the statistics, but my wife has been in her care home since May 2019 (ie 2.78 years) and most of the other residents on her floor (10 in all) were there before she moved in. It is not possible to say with any degree of certainty how long someone will live after moving into care. Averages can be misleading.
 

Philbo

Registered User
Feb 28, 2017
854
0
Kent
My late wife passed away 2 years ago, having just turned 69. She was diagnosed with FTD in early 2014, but we'd noticed issues as long as 2 years before this (maybe more?).

I was able to look after her at home until late summer 2019 when she became unwell whilst in respite for 2 weeks. She ended up needing a nursing home that September and sadly passed away in the January.

I can clearly remember asking the Dementia consultant in 2014, how long the decline would take, to which she could only suggest that 2 years was an average.

I can honestly say that I was thankful that her stay there was relatively short, as she was clearly at the end stages of this terrible "journey".

Another very elderly resident, had been there for 15 years, for most of which she had been bedridden and all but unresponsive. It's certainly a very cruel disease.

Hope your mum's stay there remains positive and it's prudent to plan ahead. My wife's funds were fractionally above the upper limit, but as we were due the bill for the respite stay, the LA agreed to part fund (taking only her pension). In our area, all of the better homes would not accept state funded residents so we affectively ended up with a choice of one, that provided nursing care and which agreed the LA rate for her care.
 

Wildflowerlady

Registered User
Sep 30, 2019
951
0
Hello @FranL it's obviously difficult to say how long care in a care home will be required. I had heard myself the average time is around 2 years but my dad passed just 8 weeks and 2 days after going into a CH in late 2020. My dad was advanced in his dementia journey when he went in and then had some further complications a small stroke and a stomach ulcer. Dad had already started to decline his eating and drinking becoming poor before he went in but he stopped altogether quite some time before he eventually passed.
 

Jaded'n'faded

Registered User
Jan 23, 2019
3,430
0
High Peak
My mother was healthy apart from dementia. She lasted for nearly 3 years after moving to a care home and had been quite bad for a year before that. Symptoms went back probably another 5 years but were minor at first.

I get why you want to move your mum somewhere lovely :)

But be careful you are not paying for facilities she will never use or only for a short while. As her dementia progresses she will do less and less and become less aware of her surroundings. Beautiful grounds, for example, are not much use if the person refuses to go outside or becomes bedbound. A cinema room sounds great but is no use when the person can no longer follow a plot. Gourmet food goes to waste when the person will only eat cake or weetabix...
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
17,559
0
68
Toronto, Canada
I believe what is called a care home in the UK is what we call a retirement home here. What you call a nursing home, we formally call long term care facility, but informally a nursing home. Correct me if I am mistaken.

My mother, who was 1 month past her 64th birthday when she was diagnosed, spent just over 2 years in a retirement home and then moved to a nursing home, where she lived for another 13 and a half years. The fact she was so young and healthy when diagnosed is why she lasted so long.

But every person is different. My mother made friends with a woman who was much the same level as Mum but who died quite a few years before her. We never can tell.
 

millalm

Registered User
Oct 9, 2019
249
0
I believe what is called a care home in the UK is what we call a retirement home here. What you call a nursing home, we formally call long term care facility, but informally a nursing home. Correct me if I am mistaken.

My mother, who was 1 month past her 64th birthday when she was diagnosed, spent just over 2 years in a retirement home and then moved to a nursing home, where she lived for another 13 and a half years. The fact she was so young and healthy when diagnosed is why she lasted so long.

But every person is different. My mother made friends with a woman who was much the same level as Mum but who died quite a few years before her. We never can tell.
Caring for your Mother for thirteen and a half years in a LTC home is beyond my ability to imagine. My Mum is just going into year 5 in LTC in Mississauga, and has been in later stage of mixed dementia for at least 2 of those years. It does help to explain how much wisdom and compassion I sense in your postings. Thank you for sharing your experience.

Lynne
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
17,559
0
68
Toronto, Canada
@millalm Thank you for the compliment but I never imagined such a long time either. A person grows into the role, I think. Mum and I certainly had rollercoaster times - she did make life so very interesting in the early years.
 

FranL

Registered User
Jan 22, 2022
22
0
My mother was healthy apart from dementia. She lasted for nearly 3 years after moving to a care home and had been quite bad for a year before that. Symptoms went back probably another 5 years but were minor at first.

I get why you want to move your mum somewhere lovely :)

But be careful you are not paying for facilities she will never use or only for a short while. As her dementia progresses she will do less and less and become less aware of her surroundings. Beautiful grounds, for example, are not much use if the person refuses to go outside or becomes bedbound. A cinema room sounds great but is no use when the person can no longer follow a plot. Gourmet food goes to waste when the person will only eat cake or weetabix...
My mum is quite healthy too apart from the dementia. She is confused most days in some way but does know what is nice and what isn’t! Looking back, I can see things which happened in the past were actually dementia but not noticed because she lived alone and then we had lock down so she didn’t really see anyone. I suspect she has probably had dementia for about 3 years. My son is all for the nice home now and says we can always move her later if we need to when she is less aware of her surroundings. We can afford 4 years without state funding taking Into account the new rules so from what I e read it seems that will be enough. But if need be, my brother and I do have the inheritance our father left us so we can top up.
 

FranL

Registered User
Jan 22, 2022
22
0
Hello @FranL it's obviously difficult to say how long care in a care home will be required. I had heard myself the average time is around 2 years but my dad passed just 8 weeks and 2 days after going into a CH in late 2020. My dad was advanced in his dementia journey when he went in and then had some further complications a small stroke and a stomach ulcer. Dad had already started to decline his eating and drinking becoming poor before he went in but he stopped altogether quite some time before he eventually passed.
Mum has definitely started to decline but left at home she would not last long - forgetting to eat and not taking meds. She has been warned that if she does not take her heart tablets she will have a stroke but she insists she in not on any heart meds and they are tablets to calm her! I think we just go for the nice home that has the specialist dementia unit as I think they will make her last years more meaningful. Fingers crossed they accept her - assessment on phone with me today 🤞
 

Sarasa

Volunteer Host
Apr 13, 2018
5,044
0
Nottinghamshire
My mother will shortly be ninety -four and has been in care for nearly three years. At the time she moved into care I’d say she was at late middle stages of dementia. Her dementia is now fairly advanced. She still talks, but doesn't make a lot of sense and her mobility is now quite limited, whereas when she went into care she was pretty fit for her age.

Like you I now realise some things that seemed a bit odd at the time were actually dementia related. Mum has vascular dementia, so for a long time her memory was pretty good, it was her logic that was off-kilter. Looking back I can see there were problems at least ten years ago, though it was only in late 2017 that things became really tricky. By 2019 I had to move into care as she was a danger to herself and others. As she was always a bit of a snob I chose a posh home with all the bells and whistles and an amazing activities programme. She took a long time to settle as she really didn't want to be there, and though she put on a good front I think most of the activities were already beyond her. The two of us did have a good time when I joined in too, but otherwise mum was happiest in the lounge or her room.

The home was in an expensive part of south-eat London, and I reckoned that mum had about five to six years of finance. Last year we moved to the East Midlands, and after a few months I moved mum to a home near here. It is much cheaper, though it looks pretty similar to her old one. Not so much going on, but now mum is really beyond all that so it doesn't seem important any more.

Mum is still pretty good otherwise physically and I could well see her living for a few more years yet. If her money doesn't last we'll have to go with council funding, but I'm taking each day as it comes.