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.

@Sittingontheporch I'm really glad you started this thread. I'm a carer for elderly DM - she has advanced Parkinson's with dementia. She has carers going in during the day but everything else is down to me - medical appointments, shopping, all bills and admin, hair, teeth, dealing with the multiple agencies involved in her care. And honestly, it's kind of killing me. She is also very emotionally needy. And things are hanging together by a thread. But a couple of months back we started looking at residential homes and had some of the comments you have referred to. "Have you thought of converting the conservatory into a bedroom?" etc lots of well-meaning suggestions that would have involved me giving up my job and more or less any time on our own as a family (I also have teen DC), adapting our house and whole lives around DM's care.

Anyway, I digress, with DM she had a traumatic childhood and very little time in a family home and therefore has always been appalled by the idea of a care home because to her it just represents another abandonment. So I can't face the idea of moving her to one because I know she would hate it so much. But the upshot of that is that a huge amount of my time is spent meeting her needs and other areas of my life are suffering. I'm at her flat most days at the moment. I'd be lying if I said I didn't resent her a bit for that.

I think a good care home can be an excellent solution and I hope that, if I get to the point where I need a high level of care in later life, my DC will not feel the slightest bit of guilt about me moving to one.

I often wonder if younger generations will get less of these comments. Because honestly, setting aside everything else for a second, how do people think it works financially? It's absolutely bizarre. People have to work! It's so weird, this expectation that everyone would just magically make giving up their job or reducing their hours work financially, just because it's in order to provide care.

Thank you again.

I'm so sorry @EmmaEmerald that you had a breakdown over it. I think your wise words will help prevent me from doing the same - thank you so much for taking the time and to everyone else. I think you're right about thinking, yup they might think I'm selfish, but I'll just live with that. One of the ways I relieve the guilt is by reframing as a feminist issue - that I feel more judgment and obligation as that's what always gets dumped on women.

Yes I'm still seething about the friend. 'Friend'. Actually she's always been like that - incredibly moralistic and judgmental, very rude about a lot of my choices (she met her husband aged 18 and is critical of anyone who's slept with more than one person. Actually she used to be very critical of anyone who masturbated too) and I should just avoid her. It was the comment asking me if I knew the room downstairs - well, der, obviously I know every room in my parents' house but also the utter obliviousness to the fact that my father had lived and died in it which is why it's shut off and used for furniture storage now.

@whatsinanumber really glad that this thread is proving useful to you too. It's so true that even if you've got paid for carers (4x day in your case, live-in my mum's), there's still so much to do. There will still be stuff to do when she moves into a care home (not least the actual moving of her, sorting out all her clothes, clearing the house etc), but it will be less and I think I'll feel a lot less resentful and a lot more loving.

A relative of mine recently moved voluntarily into a care home. It's costing the earth but the care, food and environment is really excellent.
Not all care homes are awful!

Because elderly people can be fucking stubborn and often don't know what's best for them.

This is very true and very annoying.

Also when the time comes that the move is necessary the person themselves probably cannot make an informed sensible decision because emotionally the acceptance of one's loss of independence is distressing. Even if they do still have capacity.

Choose a good place and try not to feel guilty.

@foxandbee yes she has capacity to be at home. She had a fall and broke her hip and never went back to her flat. I'm NC with my dad so there's a long story there. In short she's in a home because he doesn't want to do more / anything for her she honestly lives 20 yards from his front door. Very very sad excuse for a son

There is a stigma because it's a woman issue.

you can bet your bottom dollar no only child son with no wife and two teen children is being guilt tripped because he has decided Mum has to go in a home. nobody expects him to cut his hours at work or run himself ragged to look after Mum.

the reality is that women are the face of elderly care and society is horrified and appalled when women don't want to look after others. Just look at the bile heaped on women who "selfishly" decide to only have one child or no children. Or women that walk out of relationships and leave their children. Society cannot accept women who won't fit into the mould. So subconsciously women are pressured to take on caring roles whether they want to or not and regardless of the personal cost to them and their nuclear family. This may be unconscious as it's so ingrained into us.

basically Women ! Know Your Place

I'm not sure society does judge people harshly when their elderly relatives move into a care home. When it is necessary, it is a generous and logical thing to do.

My experiences are from my dm, df, and several elderly aunts. Each in their turn was adamant that they didn't want to go into a home. They were all fiercely independent, regarded the suggestion as an insult and reluctant even to allow a cleaner into their homes.

My dad and my aunts all stayed at home until their last weeks, followed by a very short stay in hospital. We managed by organising for them to have a daily visitor - cleaner, gardener, home chiropodist, hair dresser, Farm Foods, plus an alarm button. I or a sibling visited at weekends. We created a routine for them that gave them a reason to be up and dressed, and meant someone would notice if something wasn't quite right.

I persuaded my dm to go to a care home for a two week recuperation after a heart op on the basis that she would get three meals a day cooked for her, no chores and she could relax and heal properly. She lasted 6 hours and got a cab home. 😁

But none of them had dementia and all were reasonably mobile, just frail and less able to cook & clean for themselves.

It's a difficult time. You can only do your best, and ignore the judgement of anyone who isn't sharing the responsibility.

Having been in a situation where two of us couldn’t move my dad to change his wet bed, I think there comes a time when there is no choice but to move the person into a home. Don’t feel guilty.

Don't feel guilty. You have to do what is right for all of you, and people who criticise you have probably never even tried looking after an adult who has dementia and/or has lost their mobility, is doubly incontinent etc., doesn't want to wear a nappy or incontinence pants, cannot get themselves to the toilet, become violent, are very strong and can struggle with you too, cannot wash or dress themselves, cannot feed themselves, can do nothing about the house etc. The list goes on.

They maybe think that changing an adult nappy is no different from changing that of a baby when it is in no way comparable. A poonami from an adult is vastly more humungous and harder to deal with than that of a baby.

Don't listen to the critics, even though some might be well meaning. If they really won't back off then tell them that they are welcome to come and take over the care if they think that they are so clever and they don't like what you are doing.

The thing is it's not the us looking after her vs a care home, it's her with a live-in carer vs a care home. So I'm probably past the point of judgment given that there's already been a huge dereliction of daughterly duty!

There's a sliding scale of choices that society respects that probably goes in order of worthiness -
1)giving up your life and moving in with them
2) moving them in with you and your kids
3) keeping them at home with daily visits as you never selfishly abandoned your home town
4) keeping them at home with a live-in carer as they're past the point of safety with a visiting carer
5) ominous music, The Care Home.

I just want to feel like none of these come attached with any moral judgments. And that nobody does anything to an elderly person - that even with dementia there's a sense that it is done for or by them. My mother says she wants to move. We are facilitating it for her. And even if she didn't want to, I still think we might need to as the house isn't safe.

My friend did number 2 and I'm in awe of her. Mind you, she's not free from guilt as her father trip over her dog, hit his head and died from a brain bleed.

@Sittingontheporch glad that was helpful.
In terms of what people think of me, I try to channel Samantha from Sex and the City, when she said, "Honey, if I worried what every bitch in New York was saying about me, I'd never leave the house." 😂

@PermanentTemporary I liked that "bless your heart". I'm going to practice saying that as Lady Mary!

Sidebar - I feel like I should point out that most of the really full on carers I know have been men.

It doesn't make a difference to me - I still felt hopelessly inadequate.

These particular chaps have the natures where if you took their to do list away from them, they would be lost. They help my mum with things sometimes now and I am very grateful.

They will be lost when they retire maybe? Still out running at 5 am in their 60s.

They probably get less than four hours sleep a night and they just don't need more.

it took me a while to stop comparing myself to them. They are just made of completely different stuff than I am. As I am so much younger, they were puzzled that I don't have the same energy as them.

Also, I don't have children etc ...they just seem to be capable of doing so much more than I am.

I do think that the neighbour I mentioned, the one who spent 10 years looking after his mum, was guilt tripped somewhat. I know his siblings didn't want Care home money eating up their inheritance. (His words)

What exactly did you want your dad to do to enable your Nan to stay at home? I suggest you are doing exactly what is discussed in this thread, and morally judging the child of the parent in the care home. £1800 per week is the top end of care home fees unless your Nan has more complex needs eg dementia? Someone is obviously prepared to pay the fees. If you are NC with your dad, where are you getting all this information? Is it your Nan? Because this board is full of tales of elderly parents telling lots of partial stories to various friends and family, never the full picture.

In some ways I think 4 is as hard as 2 (assuming 3 is not an option because you've already done the moving away thing). With 4 you're doing the emergency trips to and fro when they have a fall. Not to mention the non emergency trips to sort out their admin 🤦‍♀️

Oh god tell me about it Kalamush - I'm always rushing off there as well as having to deal with a crumbling house over which I have no control or full authority.

Yes agree with funnelfan, I'm intrigued to know what Mrssunshinexxx dad should be doing in this situation? If he's organising a home for her and the move, he's hardly doing nothing. Don't underestimate how much work and emotional load that is in itself.

OP could you / your mum consider option 4.5, a retirement living flat? I think that can work well for people who don't yet need full time care.

What did you want him to do? What does she need help with in order to stay at home? What do you see the care home doing for her and could you do all that?

If your nan has mental capacity to decide her own care and £1800/wk income, there's nothing stopping her from renting a one bed flat and moving out of the residential care home. So she's either in there because she doesn't have capacity and needs to be in there or because she has agreed to be in there. If it's just that she doesn't realise she's free to move out, perhaps you can tell her and help her find a flat to rent, since you feel so strongly about it.

She has full time live in care now AIUI.

it's not enough - it takes a team in a lot of situations. A retirement flat is the lightest of help really, it's not between 4 and 5.

also, why is 4 as hard as 2?

Oh yes sorry, I guess the retirement living accommodation is more like 3.5.

Why do people on here hound on a sensitive situation you no nothing about ?! @EmmaEmerald @VelvetDragonfly
She had a flat and he's sold it !
I have 3 young children of my own it isn't my job to care 24/7 for my nan not that she needs that. If my mum was still alive this wouldn't be happening, sickening really given she wasn't even her mother. But my father lived 20 yards from her flat is fully able and retired. It's a sad sad state that he's that uninterested.

I think part of the problem of "putting them in a home" is the unspoken guilt that comes with the feeling "could/should we have done more?", but mental and physical endurance has limits and once exhaustion overtakes you then there's not much choice.

More urgently is when a person's home is sold to pay the extortionate fees and they repeatedly ask "what about when the money runs out?" every time you visit them. They are literally terrified that the care home will boot them out.

@Sittingontheporch she's mentally fine a little forgetful since breaking her hip and going to hospital then a nursing home, prior to this she was washing her self , cooking , doing what she needed to do. My dad could have cooked her a meal at dinner time and ran the hoover round for her , picked up prescriptions that's literally it. It's appalling really how so many think this situation he's done the right thing. People that have young families / still working I totally understand why they can't do much for elderly parents but he's retired and lives 10 seconds from her flat door!