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.

Residential care is also about maintaining a mother-daughter relationship whereby she remains your mother and doesn’t become your patient/adult child.

Abuse is still rife. We hear about it all the time.

Some care homes are like 5 star hotels! Certainly not like prisons. I recently had to make the decision to put my beloved elderly father with dementia in one as we could no longer cope with him at home. I spent sleepless nights agonising whether to put him in the excellent council run one (he was a self funder) where the nursing care was excellent, or whether to go for the private one with cinema and bar, and sherry evenings, but which I did not think he would have been capable of appreciating but that to be honest I'd have loved to visit him in!! In the end, he suddenly went downhill and passed before I could make a final decision. It's so hard, but sometimes a nursing home is the best decision. Please don't feel bad.

So very true. I was not the best when I was the carer. Once I accepted I could be my dad's daughter again it was the best thing for us both

@EmmaEmerald I can not get DM to agree to a stairlift despite the fact she is a massive fall risk.

Very bad physically , bad mobility issues yet wont have a stairlift put in , cant hear yet refuses to even countenance a hearing aid. Cant get in and out of the bath yet doesnt want to explore changes to the bathroom (its too small and there is a wall between the toilet and the rest of the bathroom) Back in the 80s my dad (builder) wanted to knock the wall down between the toilet and the bathroom, DM objected with the "what if someone wants to go to the loo while someone is in the bath"
Forty years later she has physical problems and limited mobility and there is no turning circle for a hoist because the bathroom is too small Sits there crying in pain but refuses to go to see a doctor. Appointments have been booked but then she cancels at the last minute because she doesnt want to go. She walks downstairs backwards really slowly. Awful to watch. Asked me at Christmas to book a mobile hairdresser for a haircut in the spring then changed her mind again. Broke her hip in Sept 2022 and ended up in hospital but even that didnt change anything

My family are v different. We have had two generations move onto sheltered housing set ups while still well. Tbh, most of my family have died before 70. So they have not needed to move on to greater levels of care. My great gran made it to 92 though, still in her sheltered housing. Everyone who has gone in has loved it.

Your mum wants to move into a care home so you aren't "putting her in a care home" at all.

It is her choice and preference to move and you are suppprting her.

The people that just stopped by recently but haven't visited for more than a year are certainly not going to be part of her care or support network so I wouldn't take any notice of their opinion. How can their opinion be more important or valid than your mum's choice?

What an interesting thread. I think that some of the generation who are judgy about 'putting mum in a home' are often secretly resentful as they may have been in a position where they had to care for elderly relatives themselves,with no option of finding a suitable home for them. It's a case of 'well we had to do it,so should you '.
But the world was different then,as previously mentioned,care homes were often unregulated and unsuitable. A lot of families could live on one income,with the wife able to stay at home,look after the children and granny. ( And it pretty much always was the woman who had to do it).Not that it would have made the task any easier,just financially more doable.

Please don’t justify yourself. Most people have no idea what it’s like caring for an LO with dementia unless they’ve experienced it themselves. Just ignore those that judge .

I'm so glad I started this thread for two reasons. One, I'm so grateful to all those who've taken the time to reassure me and support me in this difficult process. Second, more importantly, we as a society have just got to talk about this as openly as possible. The more that the realities of care and the dilemmas that we'll all face as either the elderly or their carers or their offspring or their friends, the better. Especially given that an increasing proportion of elderly won't have children to make these decisions and advocate - we should all (whether we've children or not) work on the assumption that making such plans is our responsibility.

@NoBunnyHome writes so brilliantly:
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.

This so perfectly encapsulates our weird double think from both perspectives.

@funnelfan very grateful to your sensitivity towards my feelings, but I'm fine re. the thoughts of the daughter (mrssunshine?) railing against her dad not looking after the grandmother. It's useful to hear this spelt out as it's what I kind of know already. Fortunately none of my mother's grandchildren are showing any such judgementalism. I think you articulate so well the mission creep of caring. It's never 'just' running a hoover round, picking up groceries or prescriptions. You've really articulated the realities and I hope someone reading this thread inclined to judgment will absorb your wisdom.

In reply to PP suggesting potential retirement flats, this maybe should have happened years ago but my mother can't do anything for herself. Part of the reason to move her is that we're inching towards one full-time carer not being enough. With my father, we had a live-in carer and then it needed two people to get him out of bed etc and I worry that the agency will start with, oh you need a relief carer in the afternoon and then two carers morning and evening etc, etc and then we ened up with two live-in. As well as being expensive, it was incredibly disruptive and chaotic. I was trying to explain to the 'friend' that the difference between living at home (with two carers, confined to two rooms, in a hospital bed, grab rails, ramps) and in a care home starts to become fairly academic.

As it is, every time my mother wakes the carer in the night, I end up dropping everything to go to relieve the carer for the afternoon. This isn't sustainable for my job/children/husband/sanity. She doesn't need someone with all her time, but when she needs someone she might need two. A care home has much more staff capacity.

The judgement is bizarre. No one says their mums broken her leg but they won’t ‘let her’ go in hospital they will be treating it themselves.

Someone mentioned £1800 per week for a care home. So what are the sums for carers at home. Idk as not had to confront it yet but it would seem that 1 carer during the day and 1 at night, would work out less cost at home. My rough guess is even with normal household bills added on in a mortgage free home, you would save about 30% staying at home.

As far as I know, full time live in care costs about the same as a care home (dont forget you have to cover leave etc). The trouble is that very few people can afford that level of care without selling their house.

Not sure how you are doing your calculations. Even if you got a carer at £12 an hour, my calculation is that 24 hour care would cost around £8000 a month.

I don't think you would get a carer for £12 an hour, and carers do an amazing job so I think it's only right that they get paid a lot more.

So the care home is cheaper - and has the advantage of a full team of back up and quite often the ability to deal with things like falls etc, without having to go through the whole problem of going to hospital.

That kind of price included food for my mum, and they dealt with all her medications, and liaised with GP and hospital, and they had resources for entertainment when she recovered enough to do that.

So they had little quizzes and things, and had a lounge with a range of books and DVDs. And she got to talk to more than one carer which was nice. You can also mix with other residents if you want to.

Everything was fully accessible including a little garden they could sit in.

Also if you are relying on one-to-one care at home, the carer will have health issues and personal issues etc. So when they aren't able to come along at short notice, it might be the case that a member of the family has to step in.

I could have tried to get 24 hour carers to live in with mum. But the two times she went into respite, she was in a very bad way and she needed the back up of a team of professionals.

also, many people in this situation need 2:1 with mobility issues. This may be limited to bathroom visits and washing.

But that would be incredibly difficult to coordinate at home and just as expensive, if not more.

@JenniferBooth Sorry to hear that. I think mum was obliged to agree to the stairlift in the end because many carers understandably won't take people up and downstairs. We found that out when we were looking at carers for dad.

she really couldn't physically climb the stairs at the point that she agreed to it. So if your mum can actually use them, then she hasn't yet been confronted with the situation of kind of being stranded in her own home so to speak. Mum did fall down the stairs twice.

I better leave this thread because it's so depressing. It will be over when one of us dies. Not sure which one of us is going to go first. 🤷🏻‍♀️

@EmmaEmerald

24 hour care at home is generally a lot more expensive, which is why social services won’t fund it. Anything more than two carers four times a day, and it is usually cheaper to go into a nursing home.

Don’t forget, paying a carer costs more than just whatever they take home as pay - you need to cover pension, employer NI, holiday and sick pay etc etc. Plus agency fees if you aren’t employing them directly yourself.

I have met one patient with 24hr double-handed care at home (the family took the LA to court to get it funded) and our social worker told us it was costing the council almost half a million quid a year.

My dad moved into a nursing home 18 months ago. He was 91 and mentally sharp but physically weak. My mum his carer had died 6 months before and though he tried hard living on his own, was exhausted. He wanted to stay near friends rather than move across the country to me. Plus my work means I have long hours some days. He was proud of me and didn't want me to give that up. Every time I visited he would tell me he was content. He loved being looked after.
I'm so thankful for his outlook as it helped with the guilt of not caring for him myself. And they did a much better job of it than I ever could.

I could see the care the staff gave to the patients with dementia too. Dad died quite suddenly on Monday and the staff were genuinely upset. Because they become family. The staff are overstretched and under paid but they gave dad quality of life that I could not have given and I will be for ever grateful for that.

This thread has really resonated with me. I am looking into moving my 60 year old DH into a care home. Physically and mentally impacted by a brain tumour, doubly incontinent, at massive risk of falling day and night. Clearly his prognosis is poor but he may yet live some years.

I feel so awful to be doing this - but I cannot care for him alone and the practicalities of caring for him in a home with teenage children are impossible to manage.

A very important point here is that advanced dementia might not be manageable for one carer on their own. We had full time one on one care at home for my relative. I thought this was way preferable to a care home, they could stay in their own house, the care was one to one etc etc.
Jesus, were we naive!! Things eventually got to a point where there was absolutely no way one person could manage, even with help from family where possible.

Depends on the care package. Four care visits a day would be cheaper than a home. That's the tipping point for SS to look at a care home as anymore care than that is more expensive to provide in someone's own home.

A carer there all day and another one for the night (there is a definition for 'waking nights' so a live in carer would expect to be able to sleep all night - if the elderly person needs help at night a second carer or night carer is required) would be far more expensive. Minimum wage is now £11.44 per hour so you're looking at over £1900 a week just for that for 24/7 care, but most carers (rightly!!) earn more than this, there are agency fees to pay, extra carers to cover annual leave and sickness, utility bills (elderly people often need very warm houses), food, house maintenance etc.

Don’t feel guilty / terrible, you are managing a very difficult situation the best you can. Best wishes to you.

@Springcoming I'm so sorry, it must be much harder when it's your spouse rather than a parent. I think the same applies though - it's not 'putting them in a home', it's coming to a decision about where they can be cared for in a way that is best for both them and their family.

In response to the comments about costs. My mother's live in carer is about £1900 a week - you can employ someone directly for far less (c£1100 I think, minimum) but we went through an agency when finding our way with my dad and my mother wanted the same one to stay on as main carer so we didn't change, especially since we assumed it was relatively temporary.

We had two live-in carers for my dad for about three or four months because we got to the stage where we'd need so much extra care to come in and help the live-in carer - morning and evening, afternoon to give the carer a proper break etc. The agency then said he'd need a waking carer on top of that! It was £8k a month, but we knew he was going to die within a few months and he was very determined to stay at home.

Even if we employed someone directly, it would still be at least as expensive as a good care home - we pay someone to do the garden, the house is heated to tropical levels, big supermarket shop, a dog walker (yes my mother has a dog too, madly). Plus selling the house gives funds to pay for all this.

Care at home vs a care home is kind of like the difference between an all-inclusive holiday and one where you book the flights, the villa, do a big shop on arrival, hire the car, book the excursions etc. We do the latter but I do sometimes wonder why!

Hi OP

My DM had a stroke and then a fall. We were trying to get her back home but she needs two live in carers 24/7/354. You know all the associated problems and stresses with this. I didn’t sleep through the night for 3 months while these decisions were being made. The hospital finally would only discharge her to a care home and TBH it’s such a relief. Everything is taken care of and she is enjoying it.

The judgemental people in your life can take a hike. They are not acting in your mother’s best interests even if they think they are.