Please or to access all these features

Elderly parents

Why is there so much stigma around 'putting them in a home'?

235 replies

Sittingontheporch · 02/04/2024 13:07

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.

OP posts:
Sittingontheporch · 03/04/2024 14:21

Yes indeed, it's the phrase 'putting in a home' but it doesn't matter how you word it, that seems to be the one that others reach for. I'm going to very consciously from now on go with 'my mother has made the decision to move into a home and we're helping her' or a variation. Hmm not very snappy, I'll have to work on something better.

The thing is if they have agency, then it's their decision and nobody's putting them anywhere. And if they don't have agency/capacity, then that suggests that maybe a care home might be the only suitable place for them.

PP are right that there's lots that can go wrong at home too. I expect most elder abuse is unreported. There have been quite a few cases recently of 'mercy killings' - elderly men who've killed their wives. It's usually presented as poor them, they couldn't bear her suffering, but quite often it's via fairly violent acts and it never seems to happen the other way round (women killing their spouses with dementia). It can sometimes seem like they just couldn't cope with having to do the care, especially if from a generation where caring was only done by wives. I'm not blaming them for being unable to cope but they're examples of where a care home would have been a better option.

OP posts:
MontyDonsBlueScarf · 03/04/2024 13:44

There's a big difference between 'putting them in a home', as if they had no agency, and 'all making a choice that a home is the best solution'. I think you're doing the latter but I wonder whether phrasing it as 'putting in a home' is what's causing the judgement?

MrsAvocet · 03/04/2024 12:34

MereDintofPandiculation · 03/04/2024 10:53

My father has been in a nursing home for ver 4 years. He has been treated with care and consideration throughout. We hear about abuse because it is news, not the normal state of affairs

Indeed. And abuse of elderly people in their own homes, by carers or their own family isn't exactly unheard of either. There are of course no guarantees whatever you do but the staff in the home my parents were in seemed genuinely kind and caring, the building was always spotless, warm and comfortable, the food was good and plentiful and there was a generally happy friendly atmosphere.
I know all homes are not like that though. My Mum was initially discharged from hospital into a far less suitable place but we were fortunate enough to be able to move her fairly quickly and couldn't fault the second home. In fact my Dad then chose to move there when he started to struggle at home, as he'd been so impressed by the care Mum received.
Just like nurseries, schools and so on, just because some are poor it doesn't mean they all are.

sockarefootwear · 03/04/2024 11:03

When my FIL (with very limited physical mobility and dementia) moved in to a home I was very surprised at some of the unreasonable comments from people who had showed no interest in visiting him for years, or doing anything practical to support MIL. One person in particular claimed to be distressed about how FIL would manage in a home and how MIL would cope living alone. She helpfully suggested that this could all be avoided if FIL and MIL moved in with us, or if DH stayed with PIL for half the week. Absolutely no understanding of exactly how much care FIL needed or how utterly impractical it would have been to start trying to be untrained and unpaid carers as well as having our own jobs and 2 small children.

FIL was very well looked after in the home by trained and lovely staff and MIL got a little bit of her own life back. If we had even attempted what some people suggested we would not have been able to cope and FIL would not have been as comfortable.

MereDintofPandiculation · 03/04/2024 10:53

Theraininspainfalls · 02/04/2024 20:48

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

My father has been in a nursing home for ver 4 years. He has been treated with care and consideration throughout. We hear about abuse because it is news, not the normal state of affairs

Springcoming · 03/04/2024 10:42

ADCisntme · 03/04/2024 10:11

💐

I’ll be honest with you. My mum went into a home last week and it was slightly traumatic. As I was leaving I started to cry in the car park by my car. A lady pulled up and asked if I was alright. For the first time ever I said no. She gave me a hug and said that she had been there, she was visiting her husband and she had felt very bad about moving him into a home but it was the best place for him as she couldn’t (as in unable to rather than unwilling to) look after him herself. She wasn’t that much older than me.

I hope things work out for the best for you and your family. 💐

Thanks to all of you posting such supportive messages to me.

@ADCisntme I’m hoping I will meet people like the woman who hugged you, planning this path for a partner is a very lonely place to be at the moment

But I am not in anyway negating the impact of such a decision on those of you caring for parents and other older relatives, as I have done that too. It’s never an easy decision - so difficult to feel you are doing the best thing for everyone concerned

RaraRachael · 03/04/2024 10:34

My OH was like this - "I'll never put my parents in a home etc"
However his mum now has dementia, his dad is 92 and won't do a thing to help as MiL has always run after him. They live at least 3 hours from any family members. Sheltered accommodation is not an option so I don't think there's any alternative.

MereDintofPandiculation · 03/04/2024 10:24

EmotionalBlackmail · 02/04/2024 14:38

Partly for older people, particularly from a working class background, there was stigma attached to 'being put in the workhouse' which later became public assistance institutions, which often then became
hospitals or care homes. My eldest elderly relatives are still just about old enough to remember these functioning and the stigma carried on even after they closed.

Partly amongst those who haven't had to provide care or deal with the reality of a very frail elderly person, they just don't have a clue what's involved. The comments are probably well meaning, but they're imagining a nice little old lady who sits quietly in the corner, doesn't bother anyone, joins in family meals etc. There is no awareness of lack of mobility meaning they can fall on a flat surface, let alone with a trip hazard or toys around, the 24/7 nature of caring for someone with dementia, the potential for violence, dealing with double incontinence, the how to get them washed and dressed when no longer mobile.

Yes. My grandparents were terrified of going into the local hospital because it was previously the workhouse. My grandparents were born in the 1890s. The last workhouses closed in 1948.

ADCisntme · 03/04/2024 10:11

Springcoming · 03/04/2024 06:42

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.

💐

I’ll be honest with you. My mum went into a home last week and it was slightly traumatic. As I was leaving I started to cry in the car park by my car. A lady pulled up and asked if I was alright. For the first time ever I said no. She gave me a hug and said that she had been there, she was visiting her husband and she had felt very bad about moving him into a home but it was the best place for him as she couldn’t (as in unable to rather than unwilling to) look after him herself. She wasn’t that much older than me.

I hope things work out for the best for you and your family. 💐

ADCisntme · 03/04/2024 09:54

coldcallerbaiter · 02/04/2024 22:41

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.

Edited

A live in carer costs between £1.3k and £1.9k per week depending on the need. Plus food and travel costs.

ADCisntme · 03/04/2024 09:45

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.

Sittingontheporch · 03/04/2024 09:23

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!

OP posts:
Sittingontheporch · 03/04/2024 09:21

@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.

OP posts:
Bonbonnes · 03/04/2024 09:05

Springcoming · 03/04/2024 06:42

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.

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

EmotionalBlackmail · 03/04/2024 08:51

coldcallerbaiter · 02/04/2024 22:41

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.

Edited

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.

Lampan · 03/04/2024 08:11

coldcallerbaiter · 02/04/2024 22:41

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.

Edited

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.

Springcoming · 03/04/2024 06:42

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.

Fluffythefish · 03/04/2024 05:43

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.

Saschka · 02/04/2024 23:40

coldcallerbaiter · 02/04/2024 22:41

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.

Edited

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.

JenniferBooth · 02/04/2024 23:33

@EmmaEmerald Flowers

EmmaEmerald · 02/04/2024 23:30

@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 · 02/04/2024 23:16

coldcallerbaiter · 02/04/2024 22:41

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.

Edited

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.

PermanentTemporary · 02/04/2024 23:16

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.

coldcallerbaiter · 02/04/2024 22:41

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.

RicePuddingWithCinnamon · 02/04/2024 22:22

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.