When do we know it's time for a care home?

[LJB85]

My Mum has early onset Alzheimer's and is going to be 64 this year. She has really deteriorated over the past year. She can't do anything for herself and spends most of her time stood at the front door staring into space. She does go out 4 days a week to various dementia clubs and she enjoys that, but her home life is becoming too much to handle.

She lives alone and we have recently started with agency care workers which were supposed to make our lives easier, but it's making it more difficult as Mum resists all help from them with regards to washing/changing. I'm worried about her hygiene and wellbeing. She also sleeps with the front door unlocked most days and just leaves her front door wide open in the day while she sits on the sofa.

We have cameras in the house which we check religiously to make sure she's OK, but it's completely overwhelming and all-consuming. I come in and find towels covered in poo, she peed on the kitchen floor recently and I just feel like I can't do it anymore. She needs fulltime care, and even with a generous amount of hours awarded to us for care workers, it's still not enough if they can't do the basics like wash and dress her.

I feel like I'm just waiting for a social worker or someone from the hospital to tell us that it's time to go into a care home because obviously it's a horrible and hard decision to make and none of us wants to make it. But I feel like us keeping her at home is through our own guilt and fear, rather than what's best for her at this point.

Any advice or similar experiences would be so greatly appreciated.

 

[karaokePete]

I don't have any experience of this stage yet.
However, in case you haven't seen it already there is an AS Factsheet about the issue and, in the hope that you may find it useful, here's a link for you https://www.alzheimers.org.uk/sites...downloads/factsheet_selecting_a_care_home.pdf

 

[canary]

The time for a care home is when you cant keep her safe, her needs are more than you provide, or it starts to affect your health and well being.
It sounds to me like that stage has well and truly arrived.. You said yourself - even with a generous amount of hours awarded to us for care workers, it's still not enough
Go and start looking at care homes. Most care homes have a waiting list, so get her name down on the one you want. Remember that quality of care is more important than appearances and I always recommend to people that when they are looking at care homes, ask what behaviour they wont accept, because many of them that say they accept people with dementia, but will actually only accept people with very early dementia - and your mum sounds much, much more advanced than that.

 

[lemonjuice]

Certainly once they reach your mother's stage I would be recommending looking at a Nursing Home. Unless this was a temporary set-back after a recent illness , fall etc, but it doesn't sound like that from what you've described.
Certainly once my mother no longer recognised where to 'toilet' was the 'breaking point' as the danger of contamination and health hazard were too important to ignore.

The safeguarding with your mother being vulnerable because of leaving the door unlocked is another flag.

But for me the realisation

I just feel like I can't do it anymore. She needs fulltime care, and even with a generous amount of hours awarded to us for care workers, it's still not enough

is enough of a prompt and says 'It is time'.

Presuming she owns her own home, you don't actually need SS to assess her for 'eligibilty', but you can organise it yourself.
Fully appreciate your comments

I feel like I'm just waiting for a social worker or someone from the hospital to tell us that it's time to go into a care home because obviously it's a horrible and hard decision to make and none of us wants to make it. But I feel like us keeping her at home is through our own guilt and fear, rather than what's best for her at this point.

, because it is honestly the toughest decision to make. I always assumed with my mother being non-native English speaking it would have to be up to me to 'look after her till the end'. However by the time I'd got to the end of myself, without risking mental breakdown myself, fortunately my mother was long past being able to respond in any language and as long as she was treated with the language of dignity, care and love, the words used mattered little.

Certainly for me I viewed it as a 'respite' initially. Trying it out to give me a rest and to see how my mother reacted. What about considering that as a family? Then she might do a couple of respite stays, call them 'holidays' if you wish, before making the final transition.

 

[kindred]

My Mum has early onset Alzheimer's and is going to be 64 this year. She has really deteriorated over the past year. She can't do anything for herself and spends most of her time stood at the front door staring into space. She does go out 4 days a week to various dementia clubs and she enjoys that, but her home life is becoming too much to handle.

She lives alone and we have recently started with agency care workers which were supposed to make our lives easier, but it's making it more difficult as Mum resists all help from them with regards to washing/changing. I'm worried about her hygiene and wellbeing. She also sleeps with the front door unlocked most days and just leaves her front door wide open in the day while she sits on the sofa.

We have cameras in the house which we check religiously to make sure she's OK, but it's completely overwhelming and all-consuming. I come in and find towels covered in poo, she peed on the kitchen floor recently and I just feel like I can't do it anymore. She needs fulltime care, and even with a generous amount of hours awarded to us for care workers, it's still not enough if they can't do the basics like wash and dress her.

I feel like I'm just waiting for a social worker or someone from the hospital to tell us that it's time to go into a care home because obviously it's a horrible and hard decision to make and none of us wants to make it. But I feel like us keeping her at home is through our own guilt and fear, rather than what's best for her at this point.

Any advice or similar experiences would be so greatly appreciated.

So well done for organising your mum's life as much as you have but this is too much. It is too much of an ordeal for you and quite traumatic. Most of us don't have someone else to say our loved ones need to go into a care home and it's doubtful that social services would do this. Think of your mum's best interests, surely it would be in a home where a team of folk could look after her. This has become too much. Thank you so much for posting and please tell us what happens. I do not want you to go through any more of this.

 

[sford91]

Hi,
We made the decision to put my mum into a care home in Feb 2017 and that was the hardest thing me and my sister have ever had to do in our lives at the ages of 23 and 25. But mum always said to us if I cant look after myself anymore or i become unsafe then do what you have to do, Prior to this we actually looked around few care homes with mum and she picked one she liked the best. We self fund currently not entitled to any money ( had to sell family home) however the home she picked is the one where they had space. We felt like you constantly worried, constantly checking on her , unsure of what we were walking into when we went home, I used to jump every time the phone rang expecting bad news however now, she is happy safe and settled and yes leaving her every time I visit absolutely breaks my heart over and over again I actually have a life now and don't constantly worry. Thats what my mum wanted for me and my sister to be daughters and enjoy our lives as much as possible without 'being carers' if that makes sense?. I know she is safe happy and looked after and makes life just that bit easier. xx

 

[Lindy50]

Hi,
We made the decision to put my mum into a care home in Feb 2017 and that was the hardest thing me and my sister have ever had to do in our lives at the ages of 23 and 25. But mum always said to us if I cant look after myself anymore or i become unsafe then do what you have to do, Prior to this we actually looked around few care homes with mum and she picked one she liked the best. We self fund currently not entitled to any money ( had to sell family home) however the home she picked is the one where they had space. We felt like you constantly worried, constantly checking on her , unsure of what we were walking into when we went home, I used to jump every time the phone rang expecting bad news however now, she is happy safe and settled and yes leaving her every time I visit absolutely breaks my heart over and over again I actually have a life now and don't constantly worry. Thats what my mum wanted for me and my sister to be daughters and enjoy our lives as much as possible without 'being carers' if that makes sense?. I know she is safe happy and looked after and makes life just that bit easier. xx

Great post sford91, it sounds like you and your sister have done a brilliant job for your mum. As an older person, with two daughters in their 30's, I agree especially with the bit I've put in bold. There is no way I'd want my daughters' lives to be dominated by my care needs. I'm sure few of our parents would, if they could understand what was happening.

 

[Daisy1934]

Have you thought of getting a live in carer?
It really seens to be working with my mum, she couldn’t possibly cope on her own but I felt she wasn’t ready for a care home yet.

 

[sford91]

Great post sford91, it sounds like you and your sister have done a brilliant job for your mum. As an older person, with two daughters in their 30's, I agree especially with the bit I've put in bold. There is no way I'd want my daughters' lives to be dominated by my care needs. I'm sure few of our parents would, if they could understand what was happening.

Thank you very much, we looked at all options possible mum was only 56 when diagnosed and will be 60 in September so has deteriorated fast and is non verbal now however is so happy in herself, she can still follow commands. conversation etc and still knows who people are as every time she sees us she scowls briefly and then smiles and laughs her head off. and it is harder to take her out now days as her mobility has reduced a lot but we have other options, wheel chairs etc we always find away whatever that might be and we always have a laugh even on the most difficult of visits. Them home staff are fantastic when we see them outside of the home on there days off they always come say hello and mum face always lights up, which reassures us we have done the right thing in the most difficult situation.

The most frustrating thing we found is nobody ( professionals I mean) would tell us when the right time was and we had to make that decision ourselves, nobody ( again professionals) would recommend a home etc because we were self funding,. to be honest we dealt with everything ourselves from the word go, we organised our own carers, mums own support groups etc. However I know as her daughter we did everything in our power to keep her home for as long as possible and unfortunately the time came. But do what you need to do seek as much support as possible, visit different care homes and remember it is okay to be selfish ( and by that I mean, you cant spend 24/7 worrying about mum t all times because it will eventually affect you and you have a life to) x

 

[Abbey82]

Thank you very much, we looked at all options possible mum was only 56 when diagnosed and will be 60 in September so has deteriorated fast and is non verbal now however is so happy in herself, she can still follow commands. conversation etc and still knows who people are as every time she sees us she scowls briefly and then smiles and laughs her head off. and it is harder to take her out now days as her mobility has reduced a lot but we have other options, wheel chairs etc we always find away whatever that might be and we always have a laugh even on the most difficult of visits. Them home staff are fantastic when we see them outside of the home on there days off they always come say hello and mum face always lights up, which reassures us we have done the right thing in the most difficult situation.

The most frustrating thing we found is nobody ( professionals I mean) would tell us when the right time was and we had to make that decision ourselves, nobody ( again professionals) would recommend a home etc because we were self funding,. to be honest we dealt with everything ourselves from the word go, we organised our own carers, mums own support groups etc. However I know as her daughter we did everything in our power to keep her home for as long as possible and unfortunately the time came. But do what you need to do seek as much support as possible, visit different care homes and remember it is okay to be selfish ( and by that I mean, you cant spend 24/7 worrying about mum t all times because it will eventually affect you and you have a life to) Please feel free to message me if you need to x

Thanks for writing about your experience. My Father has been diagnosed recently although waiting for the formal diagnosis, he is 59. Wondered if I could ask you a couple of questions around the deterioration rate of your Mum if possible, however totally understand if you don’t want to talk it over.

 

[lemonjuice]

Wondered if I could ask you a couple of questions around the deterioration rate of your Mum if possible,

Not the person you wrote this to, but different people will have different answers.
Also from my experience males generally have a shorter time-span, but there will always be exceptions.

My father's maiden Aunt was in her 70s when she developed it, deteriorated very quickly and died within around 3 years from memory, This was back in the 1960s.

My mother's sister was around late 70s to 81- it's difficult to say when the first obvious symptoms appeared. Slow trajectoty possibly for years previously and then she deteriorated fast into end-stage, but then lingered at the most severe stage for 6 years.,

Another Aunt, my mother's sister-in-law 9so no blood relation) started symptoms in her 50s but again had a slow trajectory, became very violent and nothing like the quiet person she had been and died at 88.

Then mother didn't show obvious symptoms until around 81, deteriorated fairly fast over 18 months from stage 4/5 to severe end-stage 9stage 7) in those last 3 years and died age 89.

There's a saying, when you've met 1 person with dementia, you've met 1 person with dementia, because it appears trajectories, deterioration, symptoms etc are so unique to every individual.

 

[Abbey82]

Not the person you wrote this to, but different people will have different answers.
Also from my experience males generally have a shorter time-span, but there will always be exceptions.

My father's maiden Aunt was in her 70s when she developed it, deteriorated very quickly and died within around 3 years from memory, This was back in the 1960s.

My mother's sister was around late 70s to 81- it's difficult to say when the first obvious symptoms appeared. Slow trajectoty possibly for years previously and then she deteriorated fast into end-stage, but then lingered at the most severe stage for 6 years.,

Another Aunt, my mother's sister-in-law 9so no blood relation) started symptoms in her 50s but again had a slow trajectory, became very violent and nothing like the quiet person she had been and died at 88.

Then mother didn't show obvious symptoms until around 81, deteriorated fairly fast over 18 months from stage 4/5 to severe end-stage 9stage 7) in those last 3 years and died age 89.

there's a saying, when you've met 1 person with dementia, you've met 1 person with dementia, because it appears trajectories, deterioration, symptoms etc are so unique to every individual.

Thanks for the reply, yes I appreciate we are all different. Just getting a feel fir the differing experiences of all people. We noticed symptoms at last 18 months to 2 years ago with my Dad but originally thought it down to his Hearing issues, looking back though I’m certain it was the dementia. He’s struggling at the moment and one moment he knows where I live and seconds later he doesn’t. He also knows real random things but then can’t remember who his son in law is, albeit he knows he is my Husband but can’t make the relationship connection. Confabulations are off the scale, no conversation is normal with him.

 

[sford91]

Thanks for writing about your experience. My Father has been diagnosed recently although waiting for the formal diagnosis, he is 59. Wondered if I could ask you a couple of questions around the deterioration rate of your Mum if possible, however totally understand if you don’t want to talk it over.

Please remember every bodies dementia is different but I am more than happy to chat xx

 

[sford91]

I think you have been incredibly brave and good and that your mum would be very proud of you. The total absence of professional support (indeed refusal to even recommend suitable care) in these cases (ours is the same) simply because we are 'self-funding' is outrageous.

Thank you for your reply I absolutely agree services for all they are helpful and there to support people are also very difficult and unhelpful at times. Which caused me the most frustration as I work in the NHS myself and could not understand why somebody could not help to young 20 something year olds but never mind we're getting by it is what it is! x

 

[nikkia]

Wow this post had me in tears, I think you are amazing to share your experiences. I umderstand what a difficult decision this is and i found comfort in your words so thank you.

My brother and I are now considering care homes for Mom...she is only 62 diagnosed 2 years ago with FTD. I wandered if I could ask you about your mums decline and at what stage did you decide a care home was best. I think i know were nearly there but its like were waiting until its gets so bad we really cant cope.

Thank you

Nikki

 

[kindred]

I think you have been incredibly brave and good and that your mum would be very proud of you. The total absence of professional support (indeed refusal to even recommend suitable care) in these cases (ours is the same) simply because we are 'self-funding' is outrageous.

I do so agree. They told me it was because to recommend would confer commercial advantage ...

 

[sford91]

Wow this post had me in tears, I think you are amazing to share your experiences. I umderstand what a difficult decision this is and i found comfort in your words so thank you.

My brother and I are now considering care homes for Mom...she is only 62 diagnosed 2 years ago with FTD. I wandered if I could ask you about your mums decline and at what stage did you decide a care home was best. I think i know were nearly there but its like were waiting until its gets so bad we really cant cope.

Thank you

Nikki

Hi Nikki

I don't mean to have people in tears! ( again if thats not aimed at me I apologies) xx