Put me in a nursing home when the time comes

[MomOfTwoGirls2]

Rant alert.
Ddad needs 24/7 care. One of 7 siblings. Main care falling to one sibling (not me) other 6 siblings assigned 1 day/overnight each.
This could go on for years.

This is not what I want for my children. If I’m lucky enough to reach old age, I want to be put in a nursing home and to let my children live their own lives.
Anybody else in same boat? AIBU??

Have any of the posters who are suggesting home carers ever tried to find any?

My mum’s in a care home after we tried for months to find her the care she needed at home.

We physically couldn’t do it ourselves. She’s off her legs and has issues with continence.

You try finding round-the-clock, reliable, consistent care. In our experience, it doesn’t exist.

I think the take-home message is 'move to a retirement complex before it's too late'

I'd like the ability to end my own life if I choose rather than 'put me in a home'. I saw an episode of Paramedics on Scene (Scottish BBC) last night and this man who was terminally ill with metastatic lung cancer had fallen and they kept trying to convince him to go hospital to get his blood pressure back up. He had the ability to resist this as he put it, he was going to die and wanted to do so in the comfort of his own home and that he wished he had the ability to end things rather than suffering the way he was.

My strong preference is paid carers in my own home.

It is ok to say no. You don’t have to be part of this rotation. You are correct that it is not feasible long term. It might be easier from a family dynamic perspective to go along with it for a bit and let it implode naturally. That way you won’t be the bad guy.

When MIL became too ill to safely stay at home with visits from carers both SIL and I both felt that perhaps we ought to offer. Neither of us had a house that could have given MIL a decent quality of life: staircases to narrow for a lift, hall too narrow for her wheelchair, bedroom too small for a hoist etc. But sure, we should just have let her shit herself in bed because that's what loving children do....

Even if you don't depend on working fulltime, there are often other responsibilities. I was caring for my own disabled child who needed frequent hospital appointments- MIL could not be left alone in the house. I also had to take my younger child to school- MIL could not be left alone in the house.

And other needs. SIL was diagnosed with cancer shortly afterwards and needed hospital treatment. I had an operation.

But sure, SIL should just have stayed at home and passed on the chemo because you owe it to your family.

My DMum is in care home they can be wildly different. I went to see 7 before we picked one, Luckilly its lovely and the staff are really nice but not all are like that and it can depend on where there are spaces so can be a bit of a lottery. There are many options to care for someone at home you can pay for 24/7 carers to come in to help but if its something like Dementia like my mum has I would say the care home is safer environment and fully set up to provide the right care for that condition. But its still very hard and every day I wish she wasnt there and that she didnt get dementia. For me I would hate my kids to go through what me & my siblings have so yeah I'd rather get professional care than them do it xxxx

You try finding round-the-clock, reliable, consistent care. In our experience, it doesn’t exist
Pinkarsedfly Well, Mum aged 90, has had 24 hour carers for the last 2 years, so we must have been lucky. We have two long terms ones, of several months, and a few who only lasted a couple of weeks, as Mum is a difficult woman and some people can't cope with her behaviour. She has recently gone in to a home, to join her husband, and actually the cost for her is the same, about £850 a week, but we are saving on food, heating, maintenance etc of her home, and the carers seemed to get through her cash like water.

The home is actually quite lovely, but it is full of other 90+ year olds, and several over 100, and therefore some of them are a bit fragile, and many just stay in their rooms. She wants to die actually, and tbf I don't wonder why. It is a bit grim to get to that age, even with good health, which she has, life doesn't have much meaning, you are just waiting to die. She gets amazing care, and the NHS (contrary to belief) seems to get her in for appointments regularly for this, that and the other, most of which treatments she then declines. She is not interested in being kept alive.

My dad recently moved into a retirement village, the type with warden on site and emergency pull cords dotted around his flat...I strongly believe this option will keep him out of a care home for longer as he has just enough support and gentle supervision to make sure he is generally ok, and company and social aspect helps keep him positive.

His other option was living alone entirely and I just could see him going downhill, fast. I’ll definitely be looking into this in my late 60s\early 70s if I can...

But they are both determined to commit suicide peacefully at home should that become unsustainable.

And have they thought about exactly how they will acheive this?

Commiting suicide "peacefully" is not as easy as some of you apparently think it is.

My dad recently moved into a retirement village, the type with warden on site and emergency pull cords dotted around his flat...I strongly believe this option will keep him out of a care home for longer as he has just enough support and gentle supervision to make sure he is generally ok, and company and social aspect helps keep him positive.

Same with my dad, late 70s, in council sheltered housing. he has a lady come in and clean once a week 9he is a bit of a hoarder) and goes out to a daily lunch club- for a hot meal - he is the youngest there and has a role collecting the money I think.

he's on benefits bit seems to be Ok with it, I think it is quite cheap even with paying for the cleaner.

I understand with death some old people develop anorexia, there is even a term for this 'anorexia of ageing / the elderly'

www.theguardian.com/education/2001/jun/07/medicalscience.healthandwellbeing1

Link about anorexia and elderly- note mentions dying

The difficulty with legalising euthanasia is:

How do you stop the right to die becoming the duty to die, for those who feel themselves to be a burden?

I sort of think that once someone is requiring 24/7 care, it is selfish to expect family to provide that level of care. I wouldn’t want my children to do that for me especially if they had their own children to look after. I hope that by the time I get to old age there is an option for euthanasia. I would happily live in assisted living but I’d find a care home bleak. The secret seems to be moving to appropriate accommodation when you’re young enough to make a life. Too many people leave it too late and end up going from the big family home to care homes.

Too many people leave it too late and end up going from the big family home
I think one problem can be that people are reluctant to give up the status of living in a large property.

YANBU.

I've worked in adult care now for around 10 years. I've been very clear with my grandparents, parents, parents in law and husband that I will endeavour to keep them at home, with paid for carers as long as possible but they will be placed in a home when the time comes. I expect the same for me. Long term, high level care is exhausting. It breaks people. I see it daily. I also see the guilt in families when making the decisions.

My mum was a bit out out. But then my gran got dementia and it was such a struggle for my mum, eventually a home was needed and my mum understood what I meant.

There's only do much a person can give and no one should expect high level care from relatives. Start the conversations early. Before they are even needed, makes it so much easier in the long run.

@soddingsoda

You sound like a wonderful person, your nan is lucky to have you.

If I got diagnosed with MND/dementia/Alzheimers anything like that, I would go to Dignatas while I still could.

Gran didn't know where she was so the massive effort it would have taken to look after her at home would have been wasted.

This.

You've got to weigh up what the loved one gains v. what you lose.

With dementia, that's not difficult. There are no home comforts, no family, no familiar ways to relax or have fun, no friends. 0. The disease already took that.

Whisper it, often dementees prefer institutions because the pressure is off and they don't get bothered by stressy strangers insisting on calling them Mum.

We did struggle at first finding carers via agencies particularly and also finding ones that the local authorities would fund as they have to be "on the list" so yes its a struggle but its still possible. We didn't need full 24hr in the end in terms of outside help - we managed alot ourselves (Dad and 6 kids but it was mostly the girls to be honest) with relief from Marie Curie and also Hospice at Home scheme towards the end (last few days). Whilst Mum had dementia we felt she did know who we were right to the end even though at the end there was only one eye working and a very slight ability to grip with one hand (she held on to her rosary beads). We had to be professional, learn how to lift, to clean and care for her skin and ensure she was turned etc. Often it was possible to understand her mind was working but what she struggled with was finding the way to communicate. It was more like she was locked in - whatever its distressing and frustrating all round and to try and care for that as one person full time is more than too much. We tried to do things in shifts and anything longer than a week and you needed 2 or 3 days to recover, and then be functional for work etc

With regard to Dignitas I think I would go for that as well, given the choice. I have similar conditions to my Mum healthwise (she was only 20 yrs older than me) and am not looking forward to it. It is difficult to judge the right time for things to change to be honest - Mums Dementia was diagnosed and we had around 2.5 yrs but the average is 4 yrs. In the end the descent to death was rapid following a stroke around 10 days before she died, you stop medication, feeding and hydrating as the body shuts down bit by bit and that is quite distressing, you learn how to keep the mouth clean and use the dry mouth gel, that pineapple juice with fibre helps keep the mouth clean.

Decisions often take time you don't have. We had LPAs in place but not sure they were alot of use in this case. The DNR decision was also hard, we knew she didn't want to do that, we also knew it would be violent if needed and overall we decided she wouldn't either she wanted to go peacefully and in the end she did.

Who would you rather be looked after - a random stranger who’s trained and paid (albeit not a lot) and working an 8 hour shift, or a random stranger with no experience who’s been awake for 23 hours, who keeps ignoring you to do random admin tasks, and who instead of being sympathetic when you tell them your family are all dead gets all weird and stressy?

My granny had dementia and id did help here having routine and structure and she was quite 'lost' in her own home- I think the idea would be those homes like they have in the Netherlands (I think) where they have pretend shops, a community and structure and care, sometimes with e.g. visits from a children's nursery. Wish we had that kind of thing over here.

Sadly people with dementia often think their close relatives are strangers though Ilssort.

Sadly people with dementia often think their close relatives are strangers though Ilssort.

....and also that they are strangers who hate them and are part of a great conspiracy to make them miserable.

I have a note, which nobody else in the family knows about, where a relative wrote 'Who will rid me of I cried when I first saw it and still cry about it occasionally now as they wrote it on a rare day when they were lucid and knew precisely what they were writing.
I've told my brother or sister because they'd be extremely upset about it.