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.

@funnelfan my sister, and I visit my nan obviously and she tells me! Fucking hell

I think it's a stigma left over from the days when homes were pretty awful. Back in the 1970s-1990's they weren't great, and that is what people who are now elderly grew up seeing if they had elderly relations who were 'in a home'.

I will say that it really is important that the person themselves is on board with the benefits of being in a home, such as social contact and someone to do all the work for them. People that go in and are not very on board with it, or who don't get a chance to pack and 'say goodbye' to their own home first, tend to not do very well and deteriorate quickly.

Sounds like your mum is on board with this and she has had a year to process the loss of her husband and get ready for the change, so it will probably be a good move for her.

It doesn’t matter what she was capable of prior to breaking her hip, it’s what she can do now.

My dad could have cooked her a meal at dinner time

And what about breakfast and lunch? Cups of tea and snacks? Who would do the food shopping plus toiletries and household items such as toilet roll and cleaning supplies?

ran the hoover round for her

who would clean the toilet and bathroom and kitchen? Wipe down the surfaces in the rest of the flat? Do her laundry? Do any necessary maintenance?

picked up prescriptions

who would order those prescriptions? Take her to the doctor for her check ups, and make sure she’s taking the medication at the right time and dose?

You have no idea.

It's people with no lived experience. If you have a family member with advanced dementia it can be the safest and best place for them.

My mother is the opposite to most. She has always told me to out her in a home when needed! She doesn't want to hold us back and would hate us to feel bad about doing it. Thankfully she is 80 this year and still with it!

I think you’re proving the OP’s fears about judgy people quite well there. As I said It doesn’t matter what she was capable of prior to breaking her hip, it’s what she can do now that matters. If she’s had a prolonged hospital stay after breaking her hip and some respite care in a nursing home then it is very likely she’s deconditioned enough to warrant being in a home, particularly if she wasn’t assessed as being safe at home with a care package.

It’s also very common for elderly people to vastly overestimate their own capabilities, so I’d take whatever she’s telling you about it with a pinch of salt.

Thanks for this thread sittingontheporch. I’m mid way through my lasting power of attorney forms for health and money. I’m 75 tomorrow, my husband died recently. We’d got onto his LPA when he became ill - you’ve prompted me to finish mine.

we Cared for our parents so have good understanding of what’s involved. I wanted to bring my mum in law to live with us wheel cancer meant she qualified for end of life care - 18 weeks life expectancy. She’d lived in her own home with our support till them. No dear, she said - you’re very happy and I won’t wreck that. She’d cared for her father for several years.
she went into a nursing home 2 miles fro us. We visited daily as did our daughters/partners. She died 12 weeks later.

I don’t want to lose my independence and I don’t want my lovely daughters lives dominated by my increasing needs.
dont feel shame x

@funnelfan no thanks I'll take her for her word. I visit weekly / twice weekly and see her mobility. Leaving this thread now.
Not proving anything to the OP everyone's situation is different. I'd of done anything to care for my mum in old age so I come at this from a very different view point to most.

Because you're talking nonsense. Blaming someone for not doing what you want them to do. Your Dad doesn't have to give up his own life to become a carer if he doesn't want to. Nobody has to do that. It doesn't make the person a bad person if they don't want to be a carer. How close he lives is irrelevant. So he wouldn't have travelling time and fuel costs, big deal. He'd still have to do all the work involved in caring for someone and running their life. It's physically demanding and takes a lot of time.

The only way your Dad could have sold your Nan's flat against her will was if he had power of attorney for finances. Even then, legally he has to make decisions that are in your Nan's best interests. If you or your Nan didn't/don't think it was in her best interests, either of you could have spoken out to the authorities at the time or at any time afterwards. Since your Dad hasn't been prosecuted for selling your Nan's flat, it must have been deemed to be in her best interests then.

The fact she had a flat and it was sold doesn't change the fact that if she has mental capacity and physical capability to care for herself, there's nothing to stop your Nan from renting a flat and moving out of the care home now. Most flats don't cost £1800/wk in rent, she'd have plenty left over for bills and going out. I'm guessing she hasn't done this because the care home probably is the best place for her to be.

OP I haven’t read the full thread, only your posts. But just wanted to say that sometimes a home is the best thing. We agonised with my relative, but the dementia was so bad that eventually even a full time live in carer couldn’t manage, as my relative was completely unmanageable without at least 2 people present for personal care etc.
Don’t feel guilty. Sometimes the absolute best thing is for them to go live somewhere surrounded by people who are trained to help. It’s hard and utter shit but you’ll get to a point when you know it’s time, and life will be less stressful after that! Just take the time to research homes as there are good and bad ones.

@VelvetDragonfly obviously you know my nan and situation better than me 🤣🤣 cannot even be arsed arguing with you anymore you literally have no clue.

@lotsofdogshere Just in case it helps you

Mum gave me third party access to her bank account. It means I can pay for her shopping etc without the faff of her trying to pay me back. I can withdraw cash for her as she prefers it for her cleaner and occasional coffee trips woth friends.

When she went in respite care, and had a stairlift fitted in order to come home, it was a lifesaver, as I could not have paid for those things from my own money.

It was easy to set up but all correspondence goes to mum, because she's the account holder. So my account card etc got sent to her home address. I appreciate this might not work if your DDs live any distance away.

She has total control of the account still, which I think doesn't happen under LPA but I don't know because I've not yet used it for her bank.

It's obvious I know the law better than you and can see your Dad has done nothing wrong here. You are the one who literally has no clue - about people's autonomy, which includes your Dad and your Nan, if she's capable.

You're exactly the sort of judgemental person OP is posting about. Angry because you want a particular outcome but don't want to provide the work involved in achieving that yourself. Berating someone else, your Dad, who has chosen to maintain control over his own life instead of doing what you want.

Agree with other posters that negative connotations were from years gone by, and often there’d be little jokes about putting someone in a home if they became a bit difficult. But I think most people don’t understand what it’s like to care for someone with dementia or someone with limited mobility.

Im glad I moved away from my home town so there’s no expectation that I’ll pop round to repair the house, cook meals or make appointments etc, let alone personal care and lifting. They’ll have to figure that out themselves. My parents also moved away from their home towns and ended up with all of their parents in care homes so I hope they will be fine with the same outcome if needed.

I do care for my mum in her old age, which is why I have the perspective that I do. Seeing someone’s mobility in a care home when all they have to do is move between bed-bathroom-lounge does not mean they are safe to be at home on their own.

It’s likely your Nan does think she’d be fine in her flat with your dad “popping in” to help, but why not talk to the care home staff next time you’re there to ask them whether she’d be capable of being on her own.

btw, it wasn’t me that reported your post, I prefer to let post like that stand and make their own points, but I guess it wasn’t very nice for the OP seeing the very judginess she is trying to avoid.

You say she has advanced dementia, no-one I know has managed this at home. It reaches a stage when full time residential care is the only option to keep uour parent safe & well cared for.

It also removes the need to have extensive work done to the house which in all likelihood will upset & distress your parent.

Moving her closer to you & your sibling makes sense - it will be easier to check up on her & her care.

At the end of the day her friends do not have to manage your mothers care & atr likely to stop visiting as the dementia progresses.

Do what is best for your mother & you & your brother.

It is far better for many people who need care to receive that care in a home where they can be waited on and have all their needs met.

There is no way that a relative with a full time job let alone dependent children can provide 24/7/365 care or even very much at all after 8 hours sleep, 8 hours of work and then life!

That is when the person who needs that level of care or anything vaguely resembling it really suffers as their needs cannot be met.

Absolutely.
There is a huge difference between being "fine" when there are other people around* *24/7 and the environment has been designed for the needs of people with limited mobility etc, and being capable of looking after yourself in your own home. I found that out in a small way when I came home after a longish hospital stay a few years ago. I was desperate to get out and sure I didn't need the nurses help with anything any more. But when I got home and my DH was out at work and my teenage DC at school for long periods I realised quite how vulnerable I was without the safety net of being able to buzz for help if I did need it. Not to mention the boredom and loneliness. I didn't realise how much support I was getting in hospital - including from the company of other patients - until it wasn't there any more. At least it was only shortish term for me and my mobility was improving not worsening but it was a sobering experience nevertheless.

You said yourself you cant care for your nan Using the fact that you have 3 kids as the get out clause. The times ive seen a child free relative doing most of the grunt work because of this.

DISCLAIMER. not criticising all parents. Just the ones who like to dictate the emotional and physical labour of others.

That's interesting, because as a parish minister I have met the same distant family member, usually always a son. I usually meet him when he arrives the day before the parent's funeral, at the point when all the arrangements have been made by his DSis and DM. He then tries to have everything changed - including order of service, hymns, readings, eulogy, where the funeral tea is, who goes in which cars ...

Yep, I've met him several times.

No one who really knows you would judge you, the others don't matter.
Are the opinions from people from other cultures as many cultures don't use homes.
Don't worry about what people say.

Absolutely. Being a carer is hard, physically and mentally.

Honestly, I think some of the stigma or judgement comes from the fact that the number of people who say they'd never burden their children with caring and the number of people who say they would care for a relative at home, far far outweigh the numbers that actually stick to either.

Both noble thoughts are far, far harder when the time comes and more often than not, require massive compromises.

All that any of us should hope for (I think) is someone that cares enough to make any deicsions with love. Which is exactly what it sounds like you are doing, OP.

We managed to look after dad at home from the first stages to his last breath, with no outside help save the GP and district nurse, the latter mainly provisioning equipment.

Sadly at the end he had lost mobility and was doubly incontinent, but he still had some quality of life right up the the few weeks of active dying.

It was pretty hard, just me and mum looking after him, but I'm very proud we were able to give him what he very much wanted, to bi in his home right up to the end.

Wouldn't recommend doing it to anyone else though!