Mum absolutely does not want to go into care

[Miss Elli]

What on earth do you do if your loved one does not want to go into care and does not accept that they need help? Todays visit to Mum was an eye opener finding tea bags, 1 door key and a battery boiled up in the kettle, the water was grey when I emptied it - Mum says Dad must have put it all there (Dad passed away 9yrs ago).

Returning home I called Social Services to update them as they had visited Mum last week, but all they did then was ask Mum if she wanted carers (No), would you like to live in a care home (No), would you like a short visit somewhere for a rest (No), are you happy and safe living at home (Yes) .... it beggars belief as Mum is very obviously no longer capable of making these decisions for herself and does not realise she is a potential danger to herself.

Mum lost her elderly dog over a month ago and has been searching endlessly for her since then (we've tried everything and nothing works) and her Occupational Therapist actually suggested getting Mum another dog!!!! I'm getting so frustrated with health professionals not understanding just how bad Mum's dementia is now.

Not quite sure what I expect from anyone reading this, it just makes me feel a bit better writing it all down.

 

[Rosettastone57]

I feel for you, I really do. It's totally frustrating. And such leading questions from SS. No magic answers I'm afraid. Others will be along soon with better advice, but I would start a diary or log of all these events to show the difficulties to SS. It'll take a crisis to get the help which sounds like it won't be long to wait.

 

[karaokePete]

Hello @missellie, I empathise with you. 'No' seems to become a default answer to closed questions and someone else is always at fault for errors - at least it seems that way with my wife!

What answer do SS expect when they ask someone whether they would like to go to a Care Home!

I agree that the, unfortunate, truth is that it will take a crisis to get help in place - when 'needs' outweigh 'wants'. I wish you the strength you need.

 

[Palerider]

Hi @Miss Elli

I never asked mum directly the question using the words care home in the end as those words immediately were followed by 'I'm staying at home' -which we did for a while until it was clear home wasn't home anymore despite what the SW said. Its a fine thing to ask a question, but the question can't be a closed one. I think on balance ultimately mum made the decision by saying something one day that was more meaningful and constructive in understanding where she was at in her world, she said 'I don't want to be alone anymore' -that was more significant to me than questions using words such as 'care home'.

I remember the SW being fearful of having to place mum into care as mum was so clear about her wishes, until the time came to make that transition. Despite all of the things mum had said about a care home, she took to it, not really understanding (because that part of her cognition had gone) that she was in a care home, to mum it was a hotel and she had people of the same age to talk to -which she loved having been alone so long in her home with no social contact other than myself who at the time was her sole carer, but I also work full time, so she would have to cope for long days on her own. It was only when mum said she didn't want to be alone anymore (which before dementia she enjoyed) I realised it was getting harder for her to make sense of her world and she needed more than I could give. I think sometimes you have to push the issues that aren't obvious with professionals and get them to assess in a different way, always remebering that a pwd will always say no to most things that don't involve 'home'

 

[Sarasa]

Hi @Miss Elli and welcome to Dementia Talking Point. Mum was self-funding so I didn't get Social Services involved, just moved her to a care home. Mum had agreed to sell her flat to move nearer my brother. I just told her the home was a temporary move as work was being done to the outside of her block of flats and the flat she wanted to move to wasn't yet ready. Mum was unsafe at home as she was going out drinking with random men in the local pub, and was also convinced her neighbours were stealing from here. I thought it was best to move before something serious happened.
This fact sheet tells you all about paying for care. If your mum would be self-funding you could just find somewhere and move her. The only problem with that is if it's decided she still has capacity, but it sounds from what you've described that your mum probably no longer has the capacity to make sensible decisions about her care.

 

[Miss Elli]

Hi @Miss Elli

I never asked mum directly the question using the words care home in the end as those words immediately were followed by 'I'm staying at home' -which we did for a while until it was clear home wasn't home anymore despite what the SW said. Its a fine thing to ask a question, but the question can't be a closed one. I think on balance ultimately mum made the decision by saying something one day that was more meaningful and constructive in understanding where she was at in her world, she said 'I don't want to be alone anymore' -that was more significant to me than questions using words such as 'care home'.

I remember the SW being fearful of having to place mum into care as mum was so clear about her wishes, until the time came to make that transition. Despite all of the things mum had said about a care home, she took to it, not really understanding (because that part of her cognition had gone) that she was in a care home, to mum it was a hotel and she had people of the same age to talk to -which she loved having been alone so long in her home with no social contact other than myself who at the time was her sole carer, but I also work full time, so she would have to cope for long days on her own. It was only when mum said she didn't want to be alone anymore (which before dementia she enjoyed) I realised it was getting harder for her to make sense of her world and she needed more than I could give. I think sometimes you have to push the issues that aren't obvious with professionals and get them to assess in a different way, always remebering that a pwd will always say no to most things that don't involve 'home'

your situation sounds just like mine, also working full time and very aware that Mum lives a very isolated, lonely life which is the worst thing for her brain function.

I have also approached the subject by asking her 'wouldn't it be nice to live really close to us and to have the company of other people and all your meals cooked' only to be told last week by the SW that we can't pretend and Mum must be asked what she wants and we can't hide the fact we are talking about care. Apparently the SW also has an issue with us having cameras in the house without Mum's knowledge - sometimes I have to try really hard not to swear at them!

Mum has had moments when she hasn't recognised her own home and she has asked when she can leave so I'm hoping that one day I can use that but it is usually a moment that can pass really quickly - shame it never happens in front of the SW.

 

[Miss Elli]

Hi @Miss Elli and welcome to Dementia Talking Point. Mum was self-funding so I didn't get Social Services involved, just moved her to a care home. Mum had agreed to sell her flat to move nearer my brother. I just told her the home was a temporary move as work was being done to the outside of her block of flats and the flat she wanted to move to wasn't yet ready. Mum was unsafe at home as she was going out drinking with random men in the local pub, and was also convinced her neighbours were stealing from here. I thought it was best to move before something serious happened.
This fact sheet tells you all about paying for care. If your mum would be self-funding you could just find somewhere and move her. The only problem with that is if it's decided she still has capacity, but it sounds from what you've described that your mum probably no longer has the capacity to make sensible decisions about her care.

Mum does own her property but when I look at care home costs it would obvs disappear very quickly. I think she'd probably only cover 7yrs. Thanks for the link, I will have a read.

 

[Palerider]

your situation sounds just like mine, also working full time and very aware that Mum lives a very isolated, lonely life which is the worst thing for her brain function.

I have also approached the subject by asking her 'wouldn't it be nice to live really close to us and to have the company of other people and all your meals cooked' only to be told last week by the SW that we can't pretend and Mum must be asked what she wants and we can't hide the fact we are talking about care. Apparently the SW also has an issue with us having cameras in the house without Mum's knowledge - sometimes I have to try really hard not to swear at them!

Mum has had moments when she hasn't recognised her own home and she has asked when she can leave so I'm hoping that one day I can use that but it is usually a moment that can pass really quickly - shame it never happens in front of the SW.

I think your social worker is clearly asking questions your mum can no longer answer from what you have said. I had to get the SW back a few times to re-assess before finally mum was found an emergency placement, because by that point she was wandering, her last epic journey was some five miles down dodgly country A roads with no footpaths -luckily a kind stranger spotted her and managed to get her back home -that was the thing that opened the SWs eyes -sadly it took that for things to change

 

[Miss Elli]

Hello @missellie, I empathise with you. 'No' seems to become a default answer to closed questions and someone else is always at fault for errors - at least it seems that way with my wife!

What answer do SS expect when they ask someone whether they would like to go to a Care Home!

I agree that the, unfortunate, truth is that it will take a crisis to get help in place - when 'needs' outweigh 'wants'. I wish you the strength you need.

Thank you - it seems to be a common problem, don't really understand what SW think the answers are going to be. Mum is only coping because of me and my juggling skills are beginning to fail me, I'm really struggling to concentrate on work. Every care home I have spoken to says you really don't want to wait for a crisis/emergency situation and I agree, I think the better Mum's health the easier the transition and the more benefits she will gain from her new life.

 

[Miss Elli]

I feel for you, I really do. It's totally frustrating. And such leading questions from SS. No magic answers I'm afraid. Others will be along soon with better advice, but I would start a diary or log of all these events to show the difficulties to SS. It'll take a crisis to get the help which sounds like it won't be long to wait.

started the diary.

 

[canary]

Mum is only coping because of me and my juggling skills are beginning to fail me,

The thing is, that SS's remit is to keep people in their own home for as long as possible, so all the while she is being kept safe they will just let you get on with it - they are not interested in what it is costing you. The only way that you can get their attention is when she starts doing things that are unsafe and you cannot prevent it. At this point they will be willing to override your mums stated wishes.

If you are self-funded, however, you dont have to go through SS and can ignore their advice. Funding for 7 years is a long time in dementia world and by that time, I doubt anyone would be thinking of sending her home again. Love lies (aka little white lies or therapeutic untruths) are, unfortunately, the only way you are likely to get your mum to move into a care home. My mum moved from hospital to a care home and I told her it was a "convalescent home" where she would stay until she was better.

 

[Susan11]

Mum does own her property but when I look at care home costs it would obvs disappear very quickly. I think she'd probably only cover 7yrs. Thanks for the link, I will have a read.

How old is your Mum?

 

[Miss Elli]

How old is your Mum?

she's 85 but though her cognitive function is absolutely shocking she's actually physically very fit - I've always joked that she'll outlive me!

 

[northumbrian_k]

Hi @Miss Elli it seems that having social services involved is hindering rather than helping you to do what is right. From what you say your mum seems ready for - and would benefit from - 24 hour care in a care home setting. As she has sufficient money to be self-funding SS don't really need to be involved. A fundamental point though is whether you have Lasting Power of Attorney in place as this will be key to how her finances are handled and what you are able to do. I never mentioned care home to my wife, made arrangements and signed the paperwork, as I was able to do as her Attorney, then delivered her to the care home on the appointed day. She is looked after better and now seems content.

I can see that this may be more difficult for you. Asking her what she thinks will not help at all. It is what she needs rather than what she wants that is paramount. If you can find a way to get her to take a 'holiday' in a care home (some creative love lies may be necessary) that will be an important first step. It would be good to be able to achieve this without the drama of a full blown crisis but this may not be possible.

 

[Miss Elli]

Hi @Miss Elli it seems that having social services involved is hindering rather than helping you to do what is right. From what you say your mum seems ready for - and would benefit from - 24 hour care in a care home setting. As she has sufficient money to be self-funding SS don't really need to be involved. A fundamental point though is whether you have Lasting Power of Attorney in place as this will be key to how her finances are handled and what you are able to do. I never mentioned care home to my wife, made arrangements and signed the paperwork, as I was able to do as her Attorney, then delivered her to the care home on the appointed day. She is looked after better and now seems content.

I can see that this may be more difficult for you. Asking her what she thinks will not help at all. It is what she needs rather than what she wants that is paramount. If you can find a way to get her to take a 'holiday' in a care home (some creative love lies may be necessary) that will be an important first step. It would be good to be able to achieve this without the drama of a full blown crisis but this may not be possible.

Luckily I do have LPA for both Finances and Health and Welfare so that does help, unfortunately it doesn't help me make a decision though, I wish someone would make it for me. You obviously have direct experience and so glad to hear that your wife is being well cared for and is content, that must be such a relief after having to make such a difficult decision. Part of me thinks Mum may well thrive in the right environment.

Def if SS put barriers in place I will just go right ahead when I feel the time is right . . . though I think even if self funding the state have to pick up the bill until the property is sold and they then take back what is owed ... I think I'm right in saying that...it's such a complicated business.

 

[Lynmax]

Although my siblings and I made the difficult decision that Mum could not go back home alone after a hospital stay following a fall, Social Services still got involved when the care home applied for a DOLS. Someone had to assess capacity and decide if mum could make safe decisions for herself. Social Services appointed a psychiatrist to assess capacity and we write a very detailed report of our concerns as did the care home. The outcome was that mum did not have capacity so it was appropriate for her to have a Deprivation of Liberty order so she could remain at the care home whatever her wishes.

Mum is self funding, at age 89, we are not worrying about how long her money will last but we think she has enough for at least ten years. Although the care home have not told us this, we know that they do have at least one residents ( the Monterey of a friend who recommended the home to us) whose money has run out and they have accepted a deal with the LA for her to remain there.

 

[Jessy82]

Miss Elli, I could have wrote this, had exactly same scenario with mum who is 84, even down to the dog as mum did the same, went looking for it constantly , she used to have neighbours and strangers in the house looking for the dog. Like your mum, mine is fit as a fiddle to and I honestly think she'll outlive me, I have a few health problems plus going through menopause. I worked full time too in my own business.

I have found social services to be hopeless, they supplied carers 4 times a day, but even those were unreliable, the agency they use for care had a bad reputation for care, but according to SS it was the only agency available. At the start of lockdwn last year things came to crisis with mum wandering without shoes, in dressing gown etc, luckily she always headed for church so we could find her, and the people at church would ring me.

I had no choice but to move in with her during llock down, I was out of work because of lockdwn, SS agreed to pay me 2 hours a day as her PA, a paltry £100 a week. And one year later I'm still at mums, my own house going to wreck and ruin lol, garden overun with weeds etc lol.

Come April 12th I'll be going back to work part time, carers coming in 15 hours a week and I'm dreading it, dreading how mum will be for 5 hours a day with carers, and how I'll cope with work and looking after mum. I miss my house, my bed ,my garden. I used to go away regularly with my friend, our history trips we'd call them, to castles stately homes etc. Since lockdwn obviously we couldn't do it, but now everything is opening up I feel ill be trapped her at mums. I have no answers for you Miss Ellii, just giving you my experience, wishing you well.

 

[Miss Elli]

Miss Elli, I could have wrote this, had exactly same scenario with mum who is 84, even down to the dog as mum did the same, went looking for it constantly , she used to have neighbours and strangers in the house looking for the dog. Like your mum, mine is fit as a fiddle to and I honestly think she'll outlive me, I have a few health problems plus going through menopause. I worked full time too in my own business.

I have found social services to be hopeless, they supplied carers 4 times a day, but even those were unreliable, the agency they use for care had a bad reputation for care, but according to SS it was the only agency available. At the start of lockdwn last year things came to crisis with mum wandering without shoes, in dressing gown etc, luckily she always headed for church so we could find her, and the people at church would ring me.

I had no choice but to move in with her during llock down, I was out of work because of lockdwn, SS agreed to pay me 2 hours a day as her PA, a paltry £100 a week. And one year later I'm still at mums, my own house going to wreck and ruin lol, garden overun with weeds etc lol.

Come April 12th I'll be going back to work part time, carers coming in 15 hours a week and I'm dreading it, dreading how mum will be for 5 hours a day with carers, and how I'll cope with work and looking after mum. I miss my house, my bed ,my garden. I used to go away regularly with my friend, our history trips we'd call them, to castles stately homes etc. Since lockdwn obviously we couldn't do it, but now everything is opening up I feel ill be trapped her at mums. I have no answers for you Miss Ellii, just giving you my experience, wishing you well.

Gosh, very similar circumstances.

 

[Quandrum]

Mums dog is her world but even the dog is feeling her wrath.

 

[Quandrum]

I have decided amongst all these posts social services a ruler to them selvs
no compassion or worth to others.