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.

There's not as much stigma now and quite frankly if someone has capacity you can't make them move anyway.

A good care home/assisted living/sheltered housing can be an excellent option for many

A good care home/assisted living/sheltered housing can be an excellent option for many

my mother would thrive in one of the care homes I’ve investigated. I would thrive from being able to be her daughter again rather than another care giver. But we are where we are until the crisis comes.

i think the best thing i can do to plan for my old age is accept now that one day i won’t be able to cope and that i may have to live in a home, and accept the extreme downsizing and elements of communal living that comes with it. If I do it right then I have 25+ years of training my brain that this will be the plan so that when it comes round I am less likely to be in denial. Unlike DM who always complained bitterly 25 years ago that grandma didn’t accept reality and move out of the family home soon enough to a more suitable place, but then did no planning to stop the same thing happening to herself.

Yes I agree with this.

DM will I hope move into a home near me if she is left on her own. DF is 5 years older and she has expressed this as a wish. I think she would thrive in a home, she hasn't really left the house much since Covid because of medical anxiety, but she used to really enjoy a bit of company. Plus she could be 10 minutes down the road rather than an hour away, so I could visit much more frequently than I do now.

i hope that works out for you both. Similarly I have two suitable homes 5 minutes walk from home, and I WFH. I could pop in every day to see her for a short visit around my meetings, and chat the inane shit that makes her happy. And then be able to go away for weekends/holidays knowing she was cared for. But in my mums head, that is being a burden. Compared to now, where I live 100 miles away and spend half my weekend travelling/shopping/cleaning/laundry/cutting toenails/being grumpy and the rest of the week managing carers, house and garden maintenance etc and gradually getting more and more exhausted. But that is fine in mums head because life pretty much carries on for her with what I do being invisible to her. I’ve tried explaining that moving would make my life easier but she doesn’t get it at all. At the moment I see her once a week not every day therefore she thinks this means she is less of a burden. Bloody dementia logic.

This such a depressing thread. My conclusion is that everyone lives too long these days. It makes me scared to get older.

Ignore the judgement OP. I have seen similarly judgy posts on MN about how people would "never" do that to their parents etc but its oh so easy to say that when you arent in that situation isnt it?

My dad got Parkinson's and lewy body dementia. He couldn't be left alone for even 10 minutes as he's try to leave the house, put things in electrical sockets, put the gas on and leave it, he'd try to get into random people's cars, he'd get up multiple times during the night to do this stuff too. There is simply no way I could watch him 24/7- when would I sleep for example? let alone having to work full time to pay the bills and look after my own kids. There came a point where it was safer and better for him to be in a home where there were staff on duty 24/7.

The idea that people can just put their life on hold, stop working or looking after their own children for several years and be on duty throughout the day and night continuously to take care of a relative is just pie in the sky- its simply not possible and its ludicrous to suggest that anyone could do this without having a total mental breakdown because its so far beyond what one person is capable of. There are good homes out there- you just have to be discerning about finding one.

Probably because a lot of care homes do not offer quality care

And i think there is a naivety about just how much is involved in caring for someone. It's not just laying an extra place at the table, cooking a meal, doing the washing, shopping etc, taking them out in a wheel chair

Often people need virtually as much care as a baby or toddler....but are fully grown adults. My dad needed care at the end of his life. If he fell, (even though he was probably only 9 stone) I couldn't lift him, I wasn't able to change a catheter or put a clean pair of incontinence pants on him. Even if you made him food he would forget to eat it. Then transporting him to various appointments. (One day it took 20 minutes for him to work out how to get out of the car)

Absolutely this. There is a huge naivety from people who have no clue what dementia for example is actually like in reality. They seem to think that doing a bit of shopping, having a cup of tea and a chat and driving to the odd doctors appointment is what "care" involves and sure, in the beginning, it can be that. But dementia for example is a deteriorating condition and people regress in the later stages to that of a toddler - requiring full continence care, bathing, feeding etc. That involves far more than popping in twice a week to help. I think many people are in for a huge shock if they think thats possible to do whilst working and taking care of your other family responsibilities. I dont give a shit if people are judgemental- those people can get back to me when they have experienced offering 24/7 care themselves, I suspect their feelings might be different then.

Who is going to action that @fungipie in the event that you no longer have capacity and do not want to go?

Also when you say anything is better than 'keep me safe and meeting my needs....' what does that mean? In pretty much any context I imagine NOT having one's needs met, NOT being safe and NOT being fed would be very much worse.

@fungiepie, if you had diagnosed dementia, I doubt very much that you would be considered eligible for Dignitas.

Plus, so often people with dementia are unable to understand, let alone remember, that they have dementia, for the simple reason that at any given moment they can’t remember that they can’t remember anything. (If that makes sense.)

I well remember my DM saying (re a sister of hers who had it), ‘If I ever get like that, I’ll take an overdose!’

But by the time she did show symptoms, she couldn’t remember even 15 minutes later that the GP had just told her she had Alzheimer’s, and got very angry if we tried to remind her. So we soon stopped. Even when she could not longer even make herself a cup of tea, she still genuinely thought there was nothing wrong with her - it wasn’t ‘denial’.

Sorry, but you are mistaken. There are many forms of Alzheimer's, and some develop quite slowly. I have a friend who has been approved for another Swiss association for assisted death. Everything is planned, and someone will book the flights for him when the time comes. He was diagnosed with Alzheimer's several years ago- but is still compos mentis. Everything is in place for when the time comes. He has visited and has been approved as being of sound mind, and absolutely clear in his decision. So even if he is a little confused on the day, everything is in place.

There are many forms of Alzheimer's

No. There are different forms of dementia, one of which is Alzheimer’s. Under Swiss law, you have to be of sound mind to take advantage of the law on assisted suicide and to get the prescription for the drugs that you have to take. Someone with diagnosed Alzheimer’s and appearing confused would not meet those criteria.

It was me who made the comment "It's about keeping them safe and meeting their needs for food, medication and warmth."

What I meant was that when you are dealing with a parent at home who is getting progressively worse with something like dementia, you can't even meet their basic needs without seriously compromising your own. Because the parent doesn't sleep, is up all hours of the day and night, can't be left to their own devices for 30 seconds, can't take medication reliably, can't do anything for themselves. So your only option is to put them into a home where there is a team of people whose job it is to feed them, make sure they are taking their pills and not wandering onto the M6.

There is another whole philosophical debate about whether it's right to keep people alive with zero quality of life. And I have to say that latterly with my dad his quality of life was very poor, as was that of my mum who was his carer. I really don't think a peaceful death before it gets to that stage is the worst outcome. But the law as it stands means that everyone has to have their basic needs met, and if family members can't do that or are just at the end of their tether, then a home is absolutely the best place.

I will do my best to keep mum at home for as long as possible
Currently on a rota with my 2 sisters

Not sure how that message is appropriate within this thread.
It's great that your mum's needs are not so extensive that they can't be managed at home, you have 2 other adults to support you with looking after her and that all three of you have the time to commit to being on an ongoing rota.

But this isn't the case for everyone.

And when it’s no longer possible? Don’t you think we’ve all tried?

Yep- I am an only child, having a "rota" is simply not possible for many of us. Even if you do have siblings, what if they live far away?

Besides, there comes a point where someone with dementia for example needs 24/7 care so unless you are planning to stay awake for 24 hours a day watching them, I dont know how its possible, even with a family rota.

@fungipie my mum was diagnosed with alzheimers in 2020. She is still in denial. She'll get really upset about something she can't understand and an hour later have zero memory and it's sorted so obviously she coped, not one of us sorted it. She thinks she manages just fine while we run around making sure she goes to medical appointments ( not a chance iif we don't take her), there is no rotting food in the fridge (her sense of smell has been destroyed by the alzheimers), ditto the bin, sorting out fraud blocks on her bank account, sorting out every time she "loses" her debit card ( they changed the design a couple of years ago so she doesn't recognise it and throws them away) etc etc. A couple of weeks ago she was panicking because she thought her debit card was about to run out and she hadn't been sent a new one. The expiry is September 2028, pointed that out and she was still panicking as that's so soon. None of this is unusual for alzheimer's. Don't be so confident that you will recognise what is happening.

Friends mum had her mum living with her. While FM was putting out the washing she decided to have a bath then sat back down in the living room and forgot all about it. FM only realised when water came through the ceiling. A couple of weeks later she was upstairs stripping the beds and smelled smoke. Her mum had decided to make a cup of tea and put a plastic kettle on the gas hob. They already had ro lock the house like Fort Knox to prevent her wandering in the night. She realised the whole family was being put at risk trying to keep her mum out of a home.

Oh how very sad. Yes, it's exactly this- even when you live with someone you cannot possibly be watching them every single second, it's not physically possible for anyone to do. I dont think people realise just how bad it can get in the later stages and you're right, it is putting others at risk.

I am so sorry to hear. And yes, that 'fine line' can be a real issue. But much less likely if a person decides, when really fit, well, and fully aware- that this is what they want to do and prepare fully for the event and put everything in place.

I guess your poor mum never expected this, and never discussed her wishes with you in good time, nor prepared. Preparation is the key, aa well as putting in place everything in writing, with GP, with solicitor, and with adult children. We have all in place- and yes, we may still miss that very fine deadline. But we have met with staff at the clinic in Switzerland and their doctors, and we are already approved. We made our fact finding visit and introductions as a fun holiday, it was great. In the meantime, we are having a ball, knowing that we have our plans ready. The Clinic will book our flights and accomodation for the 2 days before, to ensure our family is not put at risk of prosecution.

The point is that what mum planned is irrelevant and actually she always said she would go into a home if she couldn't manage. As it is she has zero insight into her condition or difficulties. She thinks there is nothing wrong. She consented to the memory test because she thought it would prove us wrong. By the afternoon she had forgotten she had seen the GP. Just like she forgot the brain scan. She regularly tells me I should see a doctor about my memory because I tell her things she doesn't need to make an optician as she's only had her glasses a week but she thinks they are years old etc etc.

And again, under Swiss law you have to be of sound mind at the time of the death, it doesn't matter what discussions you’ve had or paperwork you’ve signed in advance. It’s a fundamental tenet of medical practice that the patients consent could be withdrawn at any point, so in order for the doctor to be able to prescribe the drugs, they need to know at that point that the patient fully understands everything. They are incredibly fastidious about this.

What you’ve described doesn’t tally with how it actually works. Anyone can join associations such as Dignitas - it doesn’t mean they guarantee they will help you arrange your death when it comes to it. They don’t have an actual clinic either.

Yes, I have acknowledged that there is a fine line beyond which assistance would be denied. But it is much easier if the conversation and all arrangements are absolutely clear beforehand.

Dignitas is not the only one. My friend has been dealing with another, in another location- and he is all approved and all arrangements made. But yes, you are right, if he waits too long, it could be too late. The fact his wishes were absolutely clear, verbally and in wiriting, when he was clearly fully compo mentis despite his diagnosis- means that slight confusion will be sidelined on the day.

slight confusion will be sidelined on the day.

As this would be contrary to Swiss law, I do not believe this would happen.