Care home against will

[CharlieandLolaCat]

Hi all

I was wondering if anyone had any experience of the challenges of placing someone into a home against their will.

My DM has stage 6 dementia and lives at home with my DF. They have a carer that comes in from 8-1, 6 days and stays for longer on some days (she is employed directly and works for them 25 hrs per week). Sundays, when she doesn't come in are already challenging and my sisters and I have to step in regularly and provide support. Mum is v challenging, angry, can be violent (although reasonably frail but still relatively young at just 75), incontinent, refuses to participate in hygiene and has some arthritis that means that getting her up in the morning is really difficult. My dad is her punch bag (literally and figuratively) and finds it very difficult. We have had to call out the paramedics a couple of times as she appears to be in so much pain and will have fits. She has been in hospital on a couple of occasions but they say unless they see the seizures there isn't much they can do. We also have the adult mental health crisis team involved and they have prescribed anti-depressants as well as the Alzheimer's drugs. We are on the brink of them prescribing anti-psychotics.

Anyway, carer went away for the long weekend and it was a nightmare. I was abroad and my sister practically had to move in to ensure that dad coped. The paramedics were called and mum spent a day at the hospital. It was a total nightmare. We all have young families, I am a single parent, we all work full time and we simply can't support in this way for any period of time, although we do of course do what we can.

The carer has a week off in a couple of weeks and we have explored a number of options including getting another carer but due to location we are not well served and have had considerable issues in the past with mum's reaction to them so have decided to put her into respite care for the week and have found a lovely home. It was not an easy decision but genuinely the right one.

My mum is/was a highly intelligent woman and, for short periods of time (literally 5 mins or so) can sound v articulate but is v clear about what she doesn't want. I am concerned that because she is highly likely to be so vehemently opposed to care that not only will my dad not be able to leave her there but also that the care home will find it hard to keep her there.

Does anyone have any experience of this? Will there be an issue? I can't imagine we're the first people this will have happened to but it feels like it at the moment! Any advice or guidance gratefully received.

TIA

[CharlieandLolaCat]

And if you're still reading. Thank you. Didn't realise how long that was!

[GU24Mum]

My parents and I are looking after a relative with dementia - she sounds quite like your mother in terms of sometimes sounding quite rational and often very grumpy. It was different with her in the end as she didn't have anyone to live with so when it was too difficult, she went somewhere temporarily and was then sectioned. She's now in a care home and has a DOLS (deprivation of liberty safeguarding) - that's the document which allows the home to keep her there even though she says she wants to to home (which by the way is completely unrealistic).

What I unhelpfully don't know is how you get about getting one if someone doesn't have a social worker appointed but if you ask the home about a DOLS they may be able to say how they get one (or that they can't and would let her leave which is not what you'd want).

[Soontobe60]

OP, I feel for you! What professionals are involved with your dm? Have you contacted the elderly social worker team in your local authority? Does the respite home know how challenging she is?
Dementia is a terrible disease and lots of partners and children feel they have to cope themselves, but if your dm had cancer would you think your family should be the only ones looking after her?
You need professional support as she is not going to improve over time, and your DF will only struggle more without it.

[Verily1]

Does anyone have POA power of attorney over her?

Has her psychiatrist assessed her as lacking decision making capacity?

If she has capacity and no one has poa then no she can’t be forced.

Every local authority is different but usually you would have to show that a community care package was insufficient to meet her needs.

From what you have described she isn’t yet getting a full community care package eg daycare 5x pwk, home care 4x per day.

Does she need care during the night?

Is she getting her full attendance allowance and is DF claiming carers allowance for her?

[Powerplant]

I’m sorry you and your family are going through this but I was also going to suggest a DOLS. Ask mum’s gp for guidance or adult social care.

[AllFourOfThem]

Just in case you haven’t already, do talk to the Alzheimer’s Society and Age UK as they can be very helpful. Does your mum have a social worker assigned to her? If not, I would highly recommend contacting Adult Social Services. Does anyone had POA or a deputyship?

[Wildboar]

She needs to have a capacity assessment. If she is deemed to not have capacity then a decision can be made in her best interests to place her in a residential home. This decision is made by the power of attorney (health and welfare, bot financial). If she does not have one then usually a medical professional will give a deprivation of Liberty order and decide that residential care is in her best interests.

[hatgirl]

The mental health crisis team should be doing more. Even if it's just referring to the older adults mental health team for formal long term support. Your family shouldn't be trying to manage this yourselves.

It shouldn't have got to the point where you are asking MN for advice.

In answer to your question though - yes there are procedures in peace for this situation (known as Deprivation of Liberty Safeguards -DoLS) but adult social care will need to be involved.

[CharlieandLolaCat]

I know that we have financial POA. As we put this in place for both my parents about 4-5 yrs ago when mum still had capacity, I can't recall if that covered health but I can't imagine that we didn't, we are by nature cautious and none more so than my dad.

I know that my dad claims everything he is entitled to so yes, carers allowance and attendance allowance. I contacted social services last summer and someone came out so should I get back in touch as we'll be on their radar? It was with her actually that the first notion of capacity came up. I thought it was much more clear cut and you either had it or you didn't but from speaking to her I understood that capacity is not a binary thing and she could be deemed to have capacity for one decision when she may not on another day.

Dad does have a good relationship with the GP though who has been fantastic and the crisis team should also presumably be able to help in terms of establishing capacity?

Thank you for all your wisdom, it is hugely appreciated.

[loutypips]

A good care home that specialises in dementia WILL be able to care for her. She will not be able to leave or escape.

I know how incredibly hard it is to make the decision to place a loved one in a care home, but often it's the best place they can be. And honestly I think it sounds like you are at the stage where that's the best for your mum, and your dad. Well for all your family really.

My Nan still asks to come home, but she doesn't know where home is, she thinks it's her childhood home, which hasn't existed for years. It's really hard, but five minutes later she's forgotten and telling us to go away.

[CharlieandLolaCat]

@hatgirl yes. I quite agree, the health care professionals that we have had contact with have (for the most part) all been exceptional but there is no one really co-ordinating the care, flow of information and providing advice and guidance. You don't know the questions you should be asking and only think afterwards of something that you should have thought of at the time during what is already a difficult time. Not helped, if I'm honest, by none of us being natural carers .....

[stucknoue]

We did. We persuaded grandad it was respite because he needed an op but in reality she never was coming home. She was classified as severe dementia and got full nhs continuing care funding

[Kodi1981]

Hi hope you get it sorted I work in dementia care home and I fully understand your situation it's not easy looking after some one with dementia and I hope your social worker will help you get a dols in place takecare good luck

[bionicnemonic]

My mum was in a care home,she had dementia and attacked a visitor of another resident, she tipped tea over her and said things to her. Mum was sectioned. I was extremely upset by this but she was very well cared for and they really focused on finding the right combinations of medications to help her. Once the medication started to settle her she went back to the care home. I guess I’m trying to say that perhaps different medication could help her

[sudikko]

First of all let me say how sorry I am you find yourself in this dreadful situation. I am a qualified nurse who has cared for and had regular contact with dementia sufferers for more than 34 years.
Seven years ago after the death of my father I became aware of my mothers mental deterioration and spoke to my siblings. They both said I was exaggerating and ignored the matter.
After years of our assisting my mother so she could continue to live in her own home (carers, our multiple daily visits, my staying overnight at weekends etc) earlier this year I advised my siblings that it was no longer safe or indeed right that my mother continue to live in her own home.
As a nurse I am aware of the legislation concerning older people, dementia, their best interests etc and even though we had worn ourselves out doing the very best we could I knew it was not what the law said was right and necessary for my mother.
She often would not and some times could not take her medication, she was not eating and drinking enough, she did not like the carers coming into her home, she was lonely and frightened, she could no longer care for or look after herself, she barely slept and then spent the days exhausted - a mere shadow of her independent, quirky, funny affectionate self.
Eventually became of my experience as a nurse and as the eldest child I informed my siblings this could continue no longer and my mother had to go against her will into a place that cared for people with her needs.
The third home my mother went to live in has proven to be the best and she still lives there now. She does not like it, every time we visit she says she wants to leave, she often doesn't recognise us. It's traumatic for us to visit and her to have to live there and until she dies I cannot see how this situation will improve but I know both emotionally and legally she is where she needs to be.
This has all caused deep division within my family but we have to cope with it as my mother is past being able to make any decisions for herself and her best interests are all that matters here.
I never thought my family would be so shattered by life events but am aware through my work that thousands of other families are also going through this heartbreaking process.
Try to seperate any decisions made from your own emotions and act solely in your mothers best interests. That way eventually you will be able to accept the decisions you were forced to make even when your heart was advising you not to make them.
You are not alone in this even though it feels you are, dementia is the most recorded cause of death on death certificates today in the UK . I wish you well and hope you can navigate through this horrible situation in a way that brings the best outcome for your mum and dad and eventually for yourself.

[nickdrakeslovechild]

Sorry you are in this situation, my mum had dementia and refused to go into a care home. Finally her doctor and social worker agreed she had lost capacity and as I had POA for her we moved her into a care home.

As she was in hospial for a long time between the decision being made and the actual move into the care home, I had time to move a lot of her furniture and personal bits into her room so it was a home from home.

In all honesty she never settled and cried, wanted to go home every day which killed me to see and deal with - BUT it was safer for her being in the care home than at home. I had to keep telling myself this on a daily basis!

The care home she was in specialised in dementia care and there were doors with keycodes x 4 to get in and out of the home so there was no way she could escape.

My mum was a very manipulative and difficult woman even with the dementia and made life so difficult for anyone around her. In my situation I found caring for her was significantly affecting my mental health, so the care home move was good for both of our sakes.

She passed away 12 months after being in the care home, but I would make exactly the same decisions if I had to do it all over again.

PM me if you would like anymore help, I have, unfortunately become a bit of an expert in this field.

[timshelthechoice]

You poor, poor thing! I hope you find a way to get your mother into a home.

[CharlieandLolaCat]

I am so sorry to hear that so many of you have gone through or are going through what we are going through and thank you for the advice and support. It is really hard. I think in so many ways it would be better for her to be at home but that is becoming less and less practical and achievable while supporting not only her health and well-being but maintaining that of my dad. I have arrived today to find my mum, naked, refusing to get dressed after the shower that dad took 3 hours to get her into so he could get her out of the clothes that she wore to bed last night and wet herself in this morning. This just can't continue.

I have now read up a lot about DoLS so thank you for your help, the care home are coming tomorrow to assess and I think will be able to put in a temporary measure in place for the respite. I have also told my dad to call the GP tomorrow, update her on what is happening and speak to social services and the crisis team to get their support not least from the psychiatrist who will be able to confirm that she doesn't have capacity.

[HappyHammy]

It's so difficult. You dad is a,so at risk, he can have a carers assessment t if she is to continue living at home. If she has no capacity then the doctor can arrange for emergency placements with the wocial workers.

[jackbe3ch]

Hi working in a care home,id suggest asking the home to contact social services who can arrange a review of your dm's needs and capacity to decide for herself, the home can apply for a dols it will notify your local authority and dm's gp to her change in condition. Trust the home's carers to be experienced in caring for those with dementia and their individual needs and personalities. Altzheimers uk offer great info and support for those living with all types of dementia and id reccommend looking at their website. Hope this helps