Why is there so much stigma around 'putting them in a home'?

[Sittingontheporch]

Hi, I'm a frequent botherer of this board, but have changed username so I can be free with details and not worry about outing myself. And because the subject is one that makes me itchy with shame and fear of judgment, which is kind of the point of my query.

I feel there's so stigma and taboo around an elderly parent going into a home, an implied failure or dereliction of duty from the children. Phrases like 'never put me in a home', or 'they put her in a home', or 'I'd never let my parent go into a home'. As if it's akin to prison rather than being a measured shared decision around a situation.

Or am I paranoid?

Our situation is that my mother has advanced dementia and low-to-no mobility. She lives in a four-bedroom house about two hours drive from me and my brother (and an ocean away from my other sibling). She has always said that she wanted to move into a care home nearer to the two of us. Then when my father died, she said she wanted to stay in the house for a year with the full-time live-in carer that we had employed for him (it went up to two in his last months). It's now six months on and we've reached a crossroads. The house needs urgent adaptations to make it safe, plus a whole load of other things doing as it's falling apart. She says she wants to move and is even excited about it, but I don't know if she fully understands how much space, familiarity and her possessions she'll be giving up.

The three of us are agonising over the decision in rotation, especially the one who lives abroad. We've also had lots of 'helpful' suggestions from her friends, some of whom have told us that they're very upset by the move. Things like 'have you thought of moving her downstairs', 'have you thought of moving closer to her' etc, etc.

I think they're projecting as they wouldn't want to go into a home, but they're currently fit and well.

I just wish it didn't feel as if society judges it so negatively.

For many elderly people it's a choice of going into a home with 24 hour care and no maintenance fear of not being able to summon help etc to stress about or being stuck at home on their own for maybe 20+ hours a day with carers coming in 4 times and maybe a daily visit from family.
I know a few people who have resisted going to a home and then blossomed when they finally did.

And one reason to judge a home on the staff and not the facilities

If and when I get a dementia diagnosis- I shall make sure I go to Dignitas asap- to avoid having to be 'put in a home'.

My sister in law asked her why she was 'excited' about the care home (worried she might not understand the reality) and my mother said that she was looking forward to having to do less than she does now. She does nearly nothing as it is.

She seems desperate for others to make decisions for her. Like at my father's funeral she was supposed to leave the party bit and come to the crematorium with us and I could tell she didn't want to leave her friends. I asked her what she wanted to do and she was panicked. I said, do you want us to tell you what to do and she nodded. My sister in law and I told her that she should stay and she wasn't missing anything and you could see relief flood through her body.

She can't cope with the mental load. Others might be physically doing all the stuff. From food shopping to organising carers, but maybe she's still feeling ultimately responsible for it all and that others are merely helping her. I imagine it feels precarious, considering that people can quit a job or withdraw voluntary help at any time and for any reason. At any moment in time, something could occur and theoretically everyone involved in helping her could say they can't deal with it. In reality, someone would probably deal with it or quickly find someone else who could, but it's not guaranteed. She's in the unenviable position of having enough brains to realise she can't cope but not enough brains to do anything about it. Being dependent on others as a child is natural and, as long as the caregivers aren't abusive or neglectful, feels safe. Being dependent as an adult, without the optimistic innocence of childhood, has got to feel a lot more scary. I expect she wants to go into a care home so she can feel safe.

@Sittingontheporch I'm sorry you are in this position (as well as your siblings and your mother herself obviously). You are not wrong to follow the GPs advice to move your mother sooner and take the time to choose a home that will be a good fit for her.

My Grandma unfortunately deteriorated and required a care home (she lived over 300 miles away from most of the family)- the home turned out to be lovely, and she received excellent care throught her time there. But it is not an easy decision, and I know a lot of us (especially her children) felt guilty that she had to go in to the home. But there are lovely care homes, and I'm sure you Will be able to find somewhere that your mother will be very comfortable and well cared for

I agree with the points raised that as a society, we generally do not have conversations early enough around later life planning/advanced directives etc. This often comes to a head in a crisis and ends up causing extra stress at an already fraught time for both the ill person and their nearest and dearest.

I also think a lot of people underestimate how much caring can involve (there's obviously a vast difference between popping by with a weekly shop and stopping for a cuppa, and going in twice a day, helping with showering, coordinating with social services and multiple medical appointments etc) and the impact on those providing the care.

I'd just like to echo @EmotionalBlackmail 's point about 'the workhouse' along with the large number of institutions or homes for the 'mentally enfeebled ' as they were termed.
'enfeebled' could cover sex outside of marriage, pnd, a rocky menopause, etc and once in, it was an Institutional prison. Although many were in incredible buildings with extensive grounds.
When care in the community came in, in the 1990s there were still elderly women who'd been incarcerated by their families and professionals since being raped or having sex as young teens. Very sad.
So an understandable fear for a generation and for our parents who heard the stories.

Most of my grandparents dropped dead after a brief period of breathlessness which would be treated by statins today. Or the old persons friend, pneumonia, finished them off. We will all have more complex needs as we treat stuff that would have needed a miracle 40 years ago.

My Gran, a tough bird, lingered with dementia. The local authority, Slough, sheltered accommodation from 1980 and then the care home she lived in until 1993 were amazing. Honestly, just incredible, just what you would want.

So I hope the rhetoric about 'put in a home' will change because it helps no one and we need to separate the previous solutions from how we live today.

And if you are like my mum? She was diagnosed a few years ago. She's progressed quite slowly and still only has a Carr call daily to check everything is OK and alert us if there are problems between our visits. But because her short term memory is shot she thinks she's fine and the day after her diagnosis couldn't remember why she had been to the doctor and assumed it was just a check up. But even by then there was no way she would have been able to a organise weekend in Brighton let alone go to Dignitas.
And that's pretty common for alzheimer's

I think the 'if I get dementia, I'm going straight to dignitas' is one of another of those platitudes we tell ourselves - like the 'I'd never burden my children' and 'I'd never put my parent in a home' mentioned previously.

In reality, it's very hard to act on because the stage you might need to go is the point at which you'd lack capacity to do so. There was that film Still Alice where the 50-year-old with early onset dementia creates a series of questions on her phone along with instructions on how to kill herself if she can't answer them. I can't remember exactly what happens but she doesn't do that.

My mother has done a ReSPECT form with a DNR and instructions to prioritise comfort. She said that her greatest fear is 'hanging on too long' and she totally had capacity to make these instructions, but she feels a hugely way off being ready or wanting the end.

My father had early dementia and as long as he was in his daily routine, seemed fine. The local shopkeepers he chatted to would have been shocked if they had been told he had dementia. He still enjoyed life. But he could not have coped with a foreign trip never mind organised it himself.

Yes, this is definitely an issue. Alzheimers presents very differently for different people, and evolves at different rates. But I'll do my very best to go in time, before the disease truly gets hold- as I would have to make my choice clear. Having an advanced directive to that effect and having gone through all the paperwork in advance too. Wish me luck.

I hope to die peacefully in my sleep. But just in case, I've got all my options well prepared and clear to DH and close family. And so does DH.

As for so many things in life, advance preparation is the key.

OP - pp have already said about a time when people weren’t treated well. “putting in a home“ also has the connotation of a past time when people with disabilities were sent to an institution and never spoken of again. Implications these days that by placing them in a home you are abandoning them

Came onto this thread to say much the same - it's the phrasing, as if the person going into the home has no agency over the decision and it's like disposing of an unwanted pet. DGM always tearfully begged DM 'don't put me in a home' so she stayed at home - and she turned DM into a 24 hours a day nurse who had no life of her own and who ran around after a toxic old woman.

Yes. My grandparents were terrified of going into the local hospital because it was previously the workhouse. My grandparents were born in the 1890s. The last workhouses closed in 1948

Reading this I've just realised why my great aunt (born in 1898) was adamantly against going into hospital in her 70s. Hospitals for her were where people went to die and of course she'd remember workhouses, as well.

@MrsDanversGlidesAgain Anyone can make the decision to not go into a home. No one else has to take on the care.
Sometimes when someone does not want to go into a home you have to leave them to fail.

We left my FIL who did not want carers going into a home. His children had all been helping out, but kept saying he needed a carer instead. In the end they all said from this date we are no longer helping you. We will help you find a carer, but we are not going to do caring for you any longer. He lasted one and a half days before phoning up and asking for help to get a carer.

Agree on the dignitas trope thing. It just doesn't work that way with dementia.

My father was always very loud (and rather judgemental of people with failing health) when younger, with lots of "I'll top myself if that happens to me" or "shoot me if that happens etc". Buggered off and left my mother for a far younger woman who enjoyed his whole "silver fox" vibe, until the silver fox succumbed to Parkinson's and dementia, at which point he came home and, to my fury, my mother ended up looking after him, spending her last years of relative health and mobility trapped in the house looking after him (whilst spending £60k pa on waking care because, characteristically, he roamed the house at night). So, how did that " I'll top myself" work out then, Daddy.

How awful for your mother.

Please OP, ignore them! From experience, people are usually judgemental about it because they are utterly clueless about what it’s like to try to care adequately for anyone with dementia past the early stages.

Some people also like to say, very piously, ‘In other countries people look after their own!’ - i.e, it’s only us nasty, selfish Brits who don’t.

In any case, that just isn’t true. We used to have Indian friends, in India, one of whose parents with dementia was very well cared for by two live in carers a long way from their home. As they pointed out, such arrangements are far cheaper and easier to organise than they would be in the U.K., and added that it was common.

Of course the poor in many countries simply have no choice. A dd who was working in Cambodia saw at first hand the care of an elderly grandmother with dementia in a poor, rural village. She was tied to a chair outside all day, to stop her wandering off and getting lost - and to stop her incontinence messing the house - and was hosed down once a day to clean her up.

Oh gosh that's awful about the woman in Cambodia isn't it? I do also think a lot of this 'look after our own' stuff is predicated on deep-rooted sexism anyway. The Asian model gets talked about by male Tory MPs who would be the first to criticise a woman for not having an adequate pension.

The care of people with dementia is a massive and growing issue that I don't see anyone resolving. I heard someone point out on the radio that you can never adequately fund a national health service because the more you put in, the more people survive cancer and heart attacks and the more people will get dementia. It's bottomless.

So glad I found this thread and will read all the posts. Sitting here in tears. Mum went into care two weeks ago as even regular visits from a carer wasnt enough to keep her safe from falls and on top of toilet hygiene.I'm the only one of 5 siblings who live nearby,or even in the country. Today the surveyor and photographer came to arrange the sales of her wee house,the funds from which will pay her care fees until they run out. Probs 2 years if she lives that long.
Sister abroad,who rarely visited,has driven this as a pp said on page 1 then fucked off back home leaving me fielding tearful phone calls ftom mum asking when she can come home. It has been the most stressful and horrible period of my 60 years of life. Anyone who thinks " putting them in a home" is an easy option clearly has never done it.

we bought a house with my mum and the plan is that all the time she has enough marbles and i WANT to do care (doesn't need it yet) then she stays, but when she is no longer mentally competent it is to do what suits me and then of course my sister.
Its only fair - we used to, as a family, own a chain of "old peoples homes" - the days of sweet sane old folk having afternoon tea is long gone. Supported flats or family support or carers for a period, like you have done, are the next step. After that its more for EMI and dementia, Alzheimer's. The impact on your lives if you moved her with you, or rearranged her home will be as distressing and confusing as those that can occur when people go into homes.
My in laws both went into care because they were incapable of self care and we couldn't give them the 24/7 supervision they needed.

my opinion anyway, i personally have no family experience of just physical infirmity.

I was thinking about the old TV programme 'Waiting for God' QOD which was about people in residential care. Not that I ever watched it! But I saw a few clips and remember it being about highly competent and apparently fit and healthy people who looked about 75 at most. The sort of people who in the 50s might have lived in a boarding house hotel. Nothing like what our families are going through.

And as far as the 'Asian model' goes, I agree entirely. There are already specialist nursing homes in London and perhaps other cities catering for Asian residents, which indicates that the rhetoric spouted by Trevor Phillips and others no longer fits the reality of modern family life in ANY group. As I work in a stroke team, I see this often.

There were a few Asian residents in the home MIL was in.

I used to love Waiting For God, funny you should mention it as I was thinking about it this lunchtime.

These days they wouldn’t be in a home at all, they’d be in retirement flats or maybe sheltered housing. Diana used to steal her neice’s sports car and go off for joy rides, I seem to recall. I used to hope to be like her when I got to be old. Any way, her and Tom were perfectly capable individuals, she had a gammy leg and walked with a stick, he pretended to have dementia when it suited him. They’d have been fine living independently.

I think it's because people are in total denial about how bad it can get for elderly people. They have this idea that "care" means popping in to have a cup of tea and a chat, maybe running the hoover round every week and organising a Tesco delivery. They don't want to think about what it can be like, especially with a parent who has dementia, who is up all night shouting, can't wash themselves or take themselves to the toilet, can't be left for 5 minutes.

MIL and FIL regularly make the "never going in a home" speech and DH and his sibling just nod and smile sympathetically. They don't know what a care home is like, they just have this idea that it's sort of like hospital, and smells. They definitely don't want to think about a stage where they are incontinent and don't recognise their grandchildren. Agree that when it gets to that stage it's about meeting needs not dealing with wants. It's also remarkably selfish to expect adult children to put their own lives on hold for years on end to become 24/7 carers.

DH in particular saw what I went through with my own dad whose care needs were not being met at home and who would have been going into care had he not fallen ill and died in hospital.

I agree, @Misthios , no one wants to think of themselves or a loved one totally confused, incontinent, etc. Sadly that’s what can happen though. In her final years, my DH’s grandma regularly wandered into the street in her nightwear, frequently didn’t recognize her children, etc. She would have been far safer in a home, but DH’s uncle insisted on trying to care for her in her home (they lived next door). It almost broke him and his family.