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

@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’.

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.

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.

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

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.

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

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.

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.

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.

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

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.'

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

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.

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!

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 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.

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.

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.

@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.

AA is the equivalent of PIP for older people.

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

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!

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

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.

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.