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.

It's about keeping them safe and meeting their needs for food, medication and warmth.

When it gets to the stage they can't tell day from night, start to get physically violent and are incontinent, that's best managed in a home. I saw the start of that with dad before he got ill. Paranoia and confusion, refusal to take medication because he thought mum was poisoning him, "sundowning" symptoms with being really shouty and upset all evening, not sleeping, anxiety if he was in unfamiliar surroundings, starting to have "accidents" when using the toilet, not managing to dress himself.

Dementia is only ever going one way, it's just the speed of decline which varies. It is very difficult for family members as the person you know and love just isn't there any more. You have to try to take emotion out of it and consider what is best for the elderly person, not what you want, or what you think society expects. I would never, ever judge anyone making the decision that a home is what's best for an elderly parent as I have seen the reality of the situation - and we weren't even in that bad a situation compared with many.

Solidarity to everyone else going through this.

I like this guy

I've just looked it up - Stephanie Cole was 48 at the beginning of Waiting for God! The guy was in his late 60s, ahh the great double standard of men and women's ages. As Jack Donaghy says in 30 Rock... "i'm 50. To put that in perspective, that's like 32 for ladies".

How does the conversation get moved on? I feel like I often read about lovely multigenerational families (Kate Mosse writes a lot about this), but not where this isn't possible. Like the way history is written by the victors, the only 80/90somethings we see on TV are by their nature a) alive and b) super healthy and c) outliers. Your David Attenboroughs, Prue Leiths and Joan Bakewells.

The fact that you are wrestling with this shows what a kind and responsible person you are, OP.

PP have articulated the problems , often in the light of their own experience. I would just be repeating them if I shared mine, so I won’t bother you with it.

What I found helpful though, was to harden my heart a bit; not against my parent and their needs, but towards the outsiders who are boosting their own self esteem by criticism of my actions. In one case I did actually say to someone :‘Judge not, lest you be judged’. At least it shut them up.

The other mantra I found helpful was something a priest once said to me: that everyone in these situations has ‘equal rights’ . Your DM deserves care and consideration, but not more than your children, your husband , even yourself. Of course, you may choose to sacrifice your own share, but you don’t really have the right to sacrifice the needs of the other people in your life. My own mother would ‘I’ve had my life. You haven’t ‘.

Don’t feel afraid to stand up for yourself. When other people start the guilt trip, just look them in the eye and say ‘ but that’s what she says she wants. I’m not going against her wishes to satisfy what other people think would be better’.

Your mother is fortunate to have a child who is so interested in her welfare. I hope you find the best solution, and can set your heart at rest.

@CatTheme This had me in tears and gave me the fucking rage.

https://www.mumsnet.com/talk/womens_rights/5018190-heart-breaking-photo-of-dolly-who-was-incarcerated-for-being-pregnant?page=1

I've watched a few fictional series featuring care homes. For the most part they are so wide of the mark - lucid elderly people sitting in lovely airy rooms, then taking themselves for a stroll round the well-kept gardens. Walking up and down stairs with no help. Playing bridge in the evenings. Dinner dances. Some residents can do some of these things, but let's face it, they're all there for a reason.

If you are in a care home with people paid for by the state, the majority will have dementia.

@coldcallerbaiter we looked into live in care for an aunt of dh - frail but no dementia, and would have needed help at night. So that would have meant more than one on shifts. It would have worked out more expensive than a reasonably nice care home, especially when you take into account all the expenses of running a home, with food on top.

They are there because they are frail in mind or body, or both.
I did know of one woman, only early 60s, at FiL’s first care home, who had nothing at all wrong with her, but had put herself there after her dh died - she no longer wanted all the hassle of running a home, maintenance, bills etc. Was happy to do her own thing - she was out a lot - and have all meals provided, washing done, etc.

I should imagine that she was a rarity though!

Is she being paid Attendance Allowance? Every little helps, and AA could take £5000 a year off the fees.

Agree that when it gets to that stage it's about meeting needs not dealing with wants.

Grim prospect, of years when your wants are ignored,of being kept alive when everything that might be worth living for is denied you, and having to pay through the nose for the privilege.

Almost as if you’re being punished for still being alive. For not having “gone to Dignitas” when you were younger and fitter.

Sorry about that - I was fresh from the “cleaning and hygiene “ thread where several people were expressing disgust at these elderly men who don’t keep their houses clean.

Yes,she gets AA and an element of paid personal care. We are in Scotland.

How much is AA if you dont mind me asking? I have thought about applying for it but since it would go to my mother I don't know if it's worth it. It should be going to me!

About £60 a week, or £100 a week if it includes nighttime

AA is the equivalent of PIP for older people.

@Hedjwitch , I’m so sorry you’re going through this - I do know what it’s like. For a long time I dreaded visiting my mother because it was endless, ‘Have you come to take me home? I want to go home!’ - and really nasty accusations of me and siblings having put her there only because we were after her money.

TBH I sometimes chickened out, because I just couldn’t face it.
It was useless to tell her that if we’d just wanted her money, we’d have left her at home! Had she any idea what this place was costing?

She had absolutely no insight into her condition - no recollection that she could no longer even make herself a cup of tea, simply wasn’t safe to be left alone at all any more (e.g. locking and bolting the front door and then hiding the keys, so if there’d been a fire she’d never have been able to get out) and moreover was so often anxious or frightened of things she couldn’t even name.

It did eventually get easier, but sadly only really because her condition worsened - she no longer remembered home (or only a childhood one) and quite suddenly one day, no longer knew me, except as a ‘nice lady’ who made her cups of tea and brought her chocolate.

The care home was a lovely one, purpose built for dementia, cosy and homely with lovely staff.

I did at one point start telling her that I was looking for ‘a nice little flat’ for her, just down the road from me, and once I found a really nice one we’d go and have a look together. She’d always been an inveterate ‘mover’ so this worked well for her, and by then her short term memory was zero, so I could recycle the fib (in Alz. Soc. carers’ circles they’re called ‘love lies’ - aka ‘if it keeps them happy for the moment….’ ) ad lib.

I do so feel for you, and do hope things get easier soon. But please don’t feel guilty - she’s in the best place for the 24/7 care and supervision she now needs.

What I found helpful though, was to harden my heart a bit; not against my parent and their needs, but towards the outsiders who are boosting their own self esteem by criticism of my actions. In one case I did actually say to someone :‘Judge not, lest you be judged’. At least it shut them up.

The other mantra I found helpful was something a priest once said to me: that everyone in these situations has ‘equal rights’ . Your DM deserves care and consideration, but not more than your children, your husband , even yourself. Of course, you may choose to sacrifice your own share, but you don’t really have the right to sacrifice the needs of the other people in your life. My own mother would ‘I’ve had my life. You haven’t ‘.

Don’t feel afraid to stand up for yourself. When other people start the guilt trip, just look them in the eye and say ‘ but that’s what she says she wants. I’m not going against her wishes to satisfy what other people think would be better’.

Thank you for this @Allthegoodnamesarechosen

I am starting to get criticism from wider family and friends and they are also going into the care home to complain: all on the basis of my DM’s parallel universe truths. I know I’ve done the best I could but people will always criticise when they haven’t done anything themselves.

One of the most helpful things for me was getting ‘permission’ from a crisis team to move Mum. She was not coping on her own even with a lovely carer and 4 visits a day. She got an infection and I brought her to my home to care for her. The GP sent in a crisis health team to check her daily and avoid a hospital admission.

The staff were great. They had seen this situation many many times and strongly advised that residential care was the best option- best for Mum and best for me. It made it much easier for me to deal with a difficult decision.

This thread is interesting and very timely for me. My lovely Dad is 78 and was in hospital for four months after UTI, falls etc. He can no longer walk without help due to his balance and what osteoporosis has done to his back. He keeps forgetting he needs help to walk and tried to get up himself. My brother and I are spending thousands trying to get his home ready where he could have home care with help from us. He went into a local residential home on a temporary basis where he’s fallen today and got a suspected hip fracture.
Sadly now, he may never get home. I would challenge anyone to question us. I have a one and two year old and am a breadwinner running a business, as my partner has health issues. I couldn’t give Dad the 24 supervision he now needs. Neither could my brother and sister in law as they both work.
Every situation is different. If we were retired/ didn’t need to work, we could sort something out. We’ve lost my mother and everyone else in that generation so there’s no other support.
We’ve done so much for Dad, and will continue to do so. We both visited every day when he was in hospital, and so many people have told us to look after ourselves. He comes first, second and third; and I would feel very upset if anyone who knew us thought otherwise. We don’t care about the cost financially. We love Dad, and his safety comes first. If this means a local residential home (which I was pleasantly surprised with) and daily visits from us, so be it.

We moved our mother into care 4 weeks ago. She died last week,after only 3 weeks in care. A wonderful care home but think the upheaval was just too much for her to cope with and she died very unexpectedly. Funeral next week. Its been a very traumatic time,to put it mildly.

This makes me feel sick and so upset 'It's about keeping them safe and meeting their needs for food, medication and warmth.'

NO, no and more no. This is my worst nightmare. This is something I do not want ever. and neither do I want to be a burden to my children.

So I have everything planned, just in case. So if ever I get to that stage, and in the case of an Alzheimer's diagnosis- I won't have to organise much, It is all done already, and money put aside for the purpose. Cleared with GP, and my 3 boys. The key is preparation well in advance, and with Dementia or Alzheimer's- to go too soon, or it is too late. Can however only be done with clear and precise advance plans and preparations.

I would rather go to Dignitas too soon, than leave it too late and have to accept this. 'It's about keeping them safe and meeting their needs for food, medication and warmth.

In the meantime, I am having a ball, travelling, doing exciting stuff with friends and family. But is and when - I am ready, and everything is in place. No-one but no-one will ' keep me safe and meeting my needs for food, medication and warmth.. Ever!

Sorry to tell you @fungipie but in the event that you were diagnosed with any form of dementia, by the time you got the diagnosis your brain, thoughts etc would already have changed enough that you may not want to process with your plan. The desire to cling to life is a very powerful and base emotion that overrides a lot of our higher brain processes.

I hope for your sake you live a long and happy life filled with love and adventure. It is also possible to age without being a burden on children - at least I hope so because i don’t have children.

That’s what my Mum said and then she had a stroke and it was too late. Best intentions, @fungipie

I am so so sorry to hear. Yes, this happened to a friend who had the same plan. A massive stroke and had to live totally dependent and unable to communicate, for over a year. That is the true nightmare scenario.

And rapidly advancing Alzheimer's- but in most case, if the planning is all done in advance, registered, financed and flights and pick up arranged by someone abroad (so no risk of loved one being accused of 'helping')- then it is possible.

For now- live to the full and enjoy. And do everything possible to avoid avove scenario and take the Statins if necessary. Wish me luck.

And nothing morbid, depressed, etc, about my plan. 100% the contrary.

But in the end, anything is better than '' keep me safe and meeting my needs for food, medication and warmth.'