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.

A live in carer costs between £1.3k and £1.9k per week depending on the need. Plus food and travel costs.

💐

I’ll be honest with you. My mum went into a home last week and it was slightly traumatic. As I was leaving I started to cry in the car park by my car. A lady pulled up and asked if I was alright. For the first time ever I said no. She gave me a hug and said that she had been there, she was visiting her husband and she had felt very bad about moving him into a home but it was the best place for him as she couldn’t (as in unable to rather than unwilling to) look after him herself. She wasn’t that much older than me.

I hope things work out for the best for you and your family. 💐

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.

My OH was like this - "I'll never put my parents in a home etc"
However his mum now has dementia, his dad is 92 and won't do a thing to help as MiL has always run after him. They live at least 3 hours from any family members. Sheltered accommodation is not an option so I don't think there's any alternative.

Thanks to all of you posting such supportive messages to me.

@ADCisntme I’m hoping I will meet people like the woman who hugged you, planning this path for a partner is a very lonely place to be at the moment

But I am not in anyway negating the impact of such a decision on those of you caring for parents and other older relatives, as I have done that too. It’s never an easy decision - so difficult to feel you are doing the best thing for everyone concerned

My father has been in a nursing home for ver 4 years. He has been treated with care and consideration throughout. We hear about abuse because it is news, not the normal state of affairs

When my FIL (with very limited physical mobility and dementia) moved in to a home I was very surprised at some of the unreasonable comments from people who had showed no interest in visiting him for years, or doing anything practical to support MIL. One person in particular claimed to be distressed about how FIL would manage in a home and how MIL would cope living alone. She helpfully suggested that this could all be avoided if FIL and MIL moved in with us, or if DH stayed with PIL for half the week. Absolutely no understanding of exactly how much care FIL needed or how utterly impractical it would have been to start trying to be untrained and unpaid carers as well as having our own jobs and 2 small children.

FIL was very well looked after in the home by trained and lovely staff and MIL got a little bit of her own life back. If we had even attempted what some people suggested we would not have been able to cope and FIL would not have been as comfortable.

Indeed. And abuse of elderly people in their own homes, by carers or their own family isn't exactly unheard of either. There are of course no guarantees whatever you do but the staff in the home my parents were in seemed genuinely kind and caring, the building was always spotless, warm and comfortable, the food was good and plentiful and there was a generally happy friendly atmosphere.
I know all homes are not like that though. My Mum was initially discharged from hospital into a far less suitable place but we were fortunate enough to be able to move her fairly quickly and couldn't fault the second home. In fact my Dad then chose to move there when he started to struggle at home, as he'd been so impressed by the care Mum received.
Just like nurseries, schools and so on, just because some are poor it doesn't mean they all are.

There's a big difference between 'putting them in a home', as if they had no agency, and 'all making a choice that a home is the best solution'. I think you're doing the latter but I wonder whether phrasing it as 'putting in a home' is what's causing the judgement?

Yes indeed, it's the phrase 'putting in a home' but it doesn't matter how you word it, that seems to be the one that others reach for. I'm going to very consciously from now on go with 'my mother has made the decision to move into a home and we're helping her' or a variation. Hmm not very snappy, I'll have to work on something better.

The thing is if they have agency, then it's their decision and nobody's putting them anywhere. And if they don't have agency/capacity, then that suggests that maybe a care home might be the only suitable place for them.

PP are right that there's lots that can go wrong at home too. I expect most elder abuse is unreported. There have been quite a few cases recently of 'mercy killings' - elderly men who've killed their wives. It's usually presented as poor them, they couldn't bear her suffering, but quite often it's via fairly violent acts and it never seems to happen the other way round (women killing their spouses with dementia). It can sometimes seem like they just couldn't cope with having to do the care, especially if from a generation where caring was only done by wives. I'm not blaming them for being unable to cope but they're examples of where a care home would have been a better option.

@Sittingontheporch Yes, I know a tragic instance of this IRL. A neighbor’s elderly father killed his wife and then himself. She had dementia and it was clear that they couldn’t manage at home anymore. He couldn’t face their difficult future. 🙁

IMO, it’s far better to take action earlier and move to a safe environment, rather than try and struggle on at home. My widowed Dad (86) moved to assisted living a couple years ago and he loves it. Due to his limited mobility, he couldn’t cope in the house after my SM died, even with considerable help. Now he has an easy flat, plenty of support (meal delivery, cleaner, site manager, emergency pull cords just in case) and there’s always people to chat to if he feels like it-or he can stay at home in bed if he’s not feeling great. He’s so much happier. He says that he’ll move to a home if it becomes necessary, because he’d rather be looked after than struggle to manage.

My DPs are very much the opposite. Their neighbour in her 90s is housebound with carers in 4 times per day. Every time I see them they tell me her grown up DS should put her in a home as she has no quality of life in her house, and tell me that when/if they need it, I should move them to a home nearer to me.

I wouldn't judge anyone for encouraging their DPs to move into a home. People are living a lot longer but not necessarily healthier, and the adult DCs usually have to keep working to fund their own retirement.

I'd be so relieved if mine were in a home, they are at the just about managing phase, but from what I've seen with friends it will just take one crisis to push them over. DM I think would go in tomorrow, but DF doesn't want to.

My mother would have hated being in a home. She was a very private person and communal living was her idea of hell. She would much rather have stayed at home and had carers coming in.

My parents intend to head to Dignitas when the time comes (stubborn independent glorious curmudgeons that they are ❤) and I will fully support them in that. But they have both said to me that if this isn’t possible for whatever reason, me and my siblings are not to put our lives on hold to care for them and that we should find them safe accommodation and then enjoy our lives. They’re very proud people and I will respect their wishes. I think people often forget that many elderly people can’t think of anything worse than their adult child wiping their arse and would much rather a professional did it!

There's no obligation to join in the communal stuff. A distant relative of mine absolutely refused to join in any activities and insisted on eating all of her meals in her room!

Pretty miserable living in your bedroom.

My husband’s Granny spent many years in a very expensive home. She did live in her bedroom. She watched TV all day and nothing else really. Didn’t mix with the other residents. Quite sad when you think about it.

We had to put MIL in a home, if I can give you one tip, try not to engage with the 'helpful' people and just do what you have to do. The 'helpful' hangers-on and their opinions will tip you over the edge otherwise.

Maybe to us as fit and healthy people but someone with dementia may choose to withdraw if social interactions become too confusing or they lose the ability form a coherent sentence. That is their choice and being alone in their bedroom could be the happiest place for them.

Same with my mother. Until her dementia got so bad that we had no choice but to move her to a nursing home. Things aren’t always as simple as you might hope them to be 🙁

I don't think anyone makes the decision lightly.
But in reality living in a bedroom with a suitable bed and bathroom, access to company of others(if wanted) meals made, washing done, and medical/personal assistance when needed, might be safer and preferable to living in a house which has become unsafe or unmanageable for someone as they age or deteriorate though illness.

Well, it's not what I would want, but her choice!

And once someone is very frail and immobile they're often in just their bedroom anyway at home. Especially if it's a difficult home to adapt. At least in a care home there's more company and the possibility of joining other people as it's more accessible.

Damn this thread is useful for me to order my thoughts, THANK YOU so much to all who've contributed. Honestly, it's a load cheaper than therapy (I did try that to get over my guilt, but kept having to cancel, which I felt guilty about...).

@TerriPie and@EmotionalBlackmail have absolutely nailed it in that too often we project our own emotional responses to care homes onto people who have very different ones. And this is true of my mother's 'helpful' friends, who come at it with even more over-identification as it's what they fear for themselves.

I would hate to be in a small room with no autonomy. My mother's friends, her contemporaries, are what you'd expect of affluent 80-year-old women - they're super fit, lecture-attending, tango-dancing, 10km-walking sporty pensioners. So they feel much the same.

My mother is almost entirely immobile and her dementia makes her apathetic and incredibly fearful. I keep trying to find out what gives her pleasure or joy but the only time I've seen her truly animated is when we pretend she's an estate agent on Escape to the Country. This sounds patronising and she was an educated, creatove. talented, intelligent woman. The dementia consultant asked her what she enjoys and she said 'sitting'. 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.

Sorry, an essay but I'm processing what it is that I need to do to make her last years happy and it's so far from what my 50something self would want.

I'm welling up reading that @Sittingontheporch. Your close attention to what your mum is experiencing and feeling shows what love really is - 'it does not alter when it alteration finds'.

You are absolutely right of course @Sittingontheporch in that most people's views on things like this are based on imagining themselves in that situation, and of course residential care wouldn't be the choice of the vast majority of sprightly older people who can get out and about independently. In fact I doubt they'd get a place in most homes in those circumstances as they wouldn't need one and there are a lot of people who do!
Your Mum's friends are probably comparing their current lives with the idea of being "stuck in a home" and of course they prefer their lifestyles - who wouldn't?! But that isn't your Mum's alternative option, and nor is it for most people who go into residential care. They are making that choice generally because it is the least bad option for them. On the whole they are not swapping independent lifestyles for a care home, they are leaving increasingly difficult and often lonely lives in homes that they struggle to manage.
If it had been possible to turn my parents back into active, healthy, indepencent people I would have done anything I could to achieve that. But of course that wasn't possible. The priority had to be to make their last years as safe and comfortable as possible and in our particular circumstances residential care was the best way to achieve that. No matter how much you love someone you can't work miracles and sometimes the best course of action for all involved is to accept the inevitable and find that least bad option in what is a horrid situation.