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.

I really don't think it's judged negatively and absolutely wouldn't be in your situation. Your mum can't cope in her house and wants to move. I would simply ignore the friends, who will have their own worries and agendas- they might be thinking of themselves, they might just like having your mum around as a friend but, seeing as they're not the ones doing the caring, that's irrelevant.

I don't think there is a stigma any more. Especially not when they have complex needs.

Ignore well-meaning friends and decide as a family. The expression 'putting her in a home' is dreadful particularly when an elderly parent has been involved in the decision. You sound a lovely family and, between you all will find the best place for mum.

The stigma comes from a time when care homes didn't provide the best care and abuse was rife in them. A time before police clearance and proper training ect

My mother has absolutely insisted that if she needs it, that my brother and I are to "put her in a home". She would hate for either of us to give up our lives to look after her (altho it would be an absolute pleasure) and even more so, hate for us to be involved in personal care, especially in the event of any decline in her faculties. You need to do what is best for her and your wider family. Ignore her friends, unless they are offering to care for her themselves!

In my experience, the relative who lives furthest away is almost always unhelpful. Especially if abroad.

They have no idea how bad things have got, that you have tried all their suggestions already and have a vision of mum/dad based in the past.

I think this judgment is said about the sadly many, well certainly at least in the past) homes where elders abuse and neglect was rampant. If they are safer in a home and better looked after, visited and asked after i don't think it's cruel. I actually feel that more children are reluctant to put their parents in homes out of their own selfishness, mainly fear of their reputation damage in the community and amongst relatives or out of greed and not wanting loss or reduction of inheritance by selling the family home to fund care.

My dad had words with me when mil went into a home… I told him I couldn’t afford to give up my job to care for her, so we’d be homeless and wouldn’t be able to visit him in another country as I wouldn’t be able to leave her, i would be caring for mil.

i honestly don’t think other people , especially older males, understand what actually caring for an elderly infirm person entails. That’s it’s 24/7, can involve personal care and heavy lifting, medical appointments plus emotional toil.

Mil was perfectly happy and really well looked after, was visited by family pretty much every day and taken out 2/3 times a week. It worked really well

so ignore anyone who isn’t involved in the care process, they know nothing about your situation

You have to ignore them - as PP mentioned they are projecting.

IME of putting my DF in a home after him and DM moved in during Covid. He had Parkinson's and dementia and went down hill very quickly. DM and I agonised endlessly over it, until we really had no choice, and yet we still agonised and felt guilty. It wasn't until afterwards we realised how actually there was no real choice - and our lives mattered too. Without noticing it he had got so difficult to care for that we had subconsciously reached a point where we all knew he couldn't be left on his own in a room - at all, and my mum was going down hill with exhaustion and lack of sleep from sharing a bed with him (so he didn't go walkabout)

Along with everyone else I know who has been through this we look back and unanimously use the phrase 'not before time', we really should have done it earlier for his benefit. While looking after him at home we were doing so much caring and organising, that we didn't spend and quality time with him. Once he was in the home - when we visited we spoke to him, and didn't have any logistics or caring responsibilities. Much more quality time.

She will be very much better in a good home. Make sure its one she can stay in with dementia specialist wing. This is essential.

And yes, most people are reluctant because if you've owned you own home and built up that capital it can all go in a matter of months. 15 months cost about 60k. It's shit but that's currently the case

To be honest, none of us are actively looking after her at the moment - she has a paid carer.

That said, even without the hands-on daily care, it seems like there's an awful lot to do on top of the rest of life. Visiting, taking her to medical appointments, trying to sort out the house and garden, visiting endless care homes and agonising over the decision...

@Lifestooshort71 hits the nail on the head - the idea that we're somehow forcibly moving her when it's a joint decision, in so much as she is able to make a decision. She's not happy staying at home with a carer so far from us. I'm not sure she'll be any happier in a care home, but it will allow us to spend more time with her and not being fixing kitchen lights when we're there.

The GP was really helpful when I was fretting to him. He said she's only going to deteriorate further and he'd recommend moving her now while she has the capacity to make the adjustment and when we can make the move in a measured way, rather than waiting for a crisis where we'll have to go wherever she can.

I really appreciate these responses, thank you so much.

In terms of cost, it will actually be cheaper for her to live in a home than all the costs of running her house and paying for the live-in carer. Either way, the cash is being burnt through!

Maybe change it instead of “put into a home” to “giving my mother the care and support she needs”. It cost an absolute fortune to have a parent in a care home, I think people who can’t afford it see it negatively to alleviate their own discomfort over not being able to afford that level of care for their parent.

I am assuming you have PoA so there's no legal issue with the move. All you can do is whatever is best for their wellbeing and safety. It is a balancing act, but as she has already expressed that she would like to be in a care home, you shouldn't feel bad about it. It can be hard to find a good match though and you will need a home with specialist dementia care. You can get info on the CQC with ratings to get a starting list.

I am live in for my elderly parent who has dementia. We have discussed at which point we would be looking at care homes. In our case, it is if either of us is put in physical danger as the dementia progresses or if my parent needs a level of care that can't be provided in a home environment. It's a difficult situation, but trust your own judgement.

I agree with others, ignore the unhelpful comments from people who don’t realize the day-to-day reality of caring for someone with complex needs.

My DH’s grandma also had advanced dementia and once stayed in a home for a few weeks whilst recovering from pneumonia. She liked it and became more alert due to the increased interaction. My FIL and his sister advocated to move her there permanently, but their brother objected and said that she could be cared for in her home. It just got harder, she took to wandering off, etc.

Your mother has capacity to make this decision and will enjoy being closer to you. Yes, she’ll lose some space and possessions, but she’ll be far safer and can see you more frequently. It sounds like a good decision for her. 💐

This is what your Mum and Dad wanted and planned for. Yes it will be a difficult adjustment for her/you all but better for her to move now while she has mental capacity and wants to go, rather than wait it out to the bitter end when she may be unable to settle in and make friends without significant upset. Or worse still to your point above, when there are no longer the funds to make it a destination that you are all comfortable with.

I honestly don't know what we'd do if she couldn't afford either a live-in carer or a care home. She just couldn't live with me, I wouldn't be able to work or look after my teenage children or ever have any sort of life. And we'd have to move house so wouldn't solve the current crisis. I just don't know how people think it's manageable.

Caring is a full-on, full-time, skilled job.

Thank you again. It's all quite live for me because an old friend of mine visited my mother with her mother. Apparent her mum is very upset on hearing about the move and so my friend was full of really obvious suggestions as if we wouldn't have gone through them all. Like 'do you know the room currently storing furniture? Why don't you move her in there?'. And I was, hmmm, yes the room where my father lived unable to move from a hospital bed for a year and where he died last year. Yes I know that room and your mother would know it too if she'd visited at all recently.

Her FIL had dementia but the difference was that her MIL was healthy and well so was able to coordinate the carers, do the finances etc instead of what we had which was two very ill parents with conflicting needs.

And here I am self-justifying again. I wish the conversation around it was such that I didn't feel the need to. I really appreciate some of the phrases that you're sharing with me.

Yep, it is something that is widely recognised in elderly care medicine - a distant family member, usually a son, visits at Christmas, discovers mum is not as well as she was when they last saw her in 2017, and drag her up to be hospital “because something must be done”.

Then you meet the daughter who has been doing all of mum’s personal care, and discover that this has been a steady and consistent decline over the past five years, fully investigated by GP and community geriatrician, and irreversible. Son storms for a bit then goes back home, daughter is left to pick up the pieces with mum’s new delirium from her pointless hospital admission.

I've already told my child that if I need a great deal of care, he's to find me a nice home and not feel guilty about it, even if I'm not happy about it at the time as my permission now over-rules that.

My father (and my poor Mum) really suffered due to him not moving to a home early enough.

To be honest @Elephantsareace I don't even think that's enough - I think we should find our own nice homes when the time comes or ideally well in advance. The responsibility of finding a home and managing the move for her is what I'm struggling with.

One of my brothers was sent to boarding school at 7 - ironically my parents did spend any time looking round schools or agonising about that decision!

Sorry that should read my parents did NOT agonise about that decision.

My dad recently put my Nan in a home and I think he's a total POS but that's because she doesn't need to be in one.

My Mum had Alzheimer's and spent the last couple of years of her life in a nursing home. She needed round the clock care to keep her safe and we weren't in a position to provide that as a family. It was absolutely exhausting and very traumatic for everyone, especially my Dad who was barely sleeping and was neglecting his own health. Everyone in the family was better off once Mum was getting the level of care she actually needed. And in fact when she still had capacity my Mum,who was a very proud and private person had said that she didn't want me or my sister providing personal care for her but she would accept nurses or carers doing it as they were professionals so it actually was what she preferred.
Of course my sister and I got lots of criticism, largely from people who have no experience of caring for a loved one with dementia, but it was water off a ducks back as far as I was concerned. We made a decision as a family which we knew was the right one and I don't really care what anyone else thinks. Of course nobody ever wants to be in a position where a decision of this type is needed sadly it does happen and there are definitely situations when residential care is the best option available. Anyone who can't recognise that is, at best, lacking in imagination.

We left it and left it until it became apparent that neither MIL and FIL could cope in a 4 bedroom detached with double garage in the middle of nowhere. FIL didn't want a dementia diagnosis and now finally has one after years of waiting. But what we didn't see was MIL was worse than he was. We moved them into assisted living in December after a few incidents and her asking for help and it just went downhill from then on. We believe they've been masking it in their home and when moved it became apparent that they could not function properly.

We tried to get an assessment for MIL and did the usual urine infection tests, cat scan etc. We had to put her into another home for respite from him as we thought she couldn't cope with him but they couldn't cope with her. They put in place an emergency DOLS and she got a diagnosis of dementia that same day after waiting for months. She is now in a dementia care home and is fighting with other patients etc. She's just fallen off the edge of a cliff so rapidly- delusional, violent.

Its been a total shock how quickly this has come about but she cannot go back to FIL so it had to be a specialist care home. I'd never judge anyone until you are living it and even then you do what you feel is best in an awful situation