How much are people willing to sacrifice with care for the elderly?

[mids2019]

We are probably in a situation familiar with a lot of people here with frail parent (fil) as well as teenage children and jobs.

the question is how far do you go to support the elderly parent given traditionalism have to make large sacrifices at home? Do people get to a stage of costing a very crisp immobile parent so often that family life becomes increasingly strained but from an emotional level feel little choice? Do people give up employment to look after the elderly and is there a societal expectation that children especially women should become essentially full time carers?

How do you go about making decisions about how to organise your lives with change?

After seeing the carnage caused by elderly relatives refusing care etc, I am currently making provision so that I can go into a home/suitable supported accommodation and get appropriate care if and when the time comes. I never want to be a burden to my dc

This. You can make all the plans you want, but...

If you hold a Health and Welfare P of A for someone, and you feel that ‘striving to keep alive’ would not be in the person’s best interests (TBH to me, it can verge on cruelty) you can make your feelings known to the medics. From all I’ve ever read or heard, it’s often the relatives who insist on someone being kept going regardless. The tearful ‘I can’t bear to let Mum go!’ etc.

As for yourself, you can make it very clear in your own H&W P of A, in which circs. you would NOT want any life-saving or life- prolonging treatment,

This thread has become a place to share our stories and a place for people to realise there's no planning that can prepare you for the utter devastating reality of what happened/will happen to some of the people we love..
I could write a book about my own experience. But I can't..it makes me cry thinking about what happened to my beautiful intelligent kind and utterly precious perfect Mum..
Not even taking in to account my dad's wishes. as her carer who was desperate to keep her home even though he was terminal himself. Eventually it all fell apart and it was a s show.. no plans could be made because Dad had final say (rightly so) and all we could do was firefight. It was a horrendous 5 yr period.(F you COVID) And if I'm truthful I'm glad they both died within 16 mths of each other..
I'm sorry for the people who will have to go through this I truly am.

And sorry it doesn't actually answer the OPs question really..
I was in a 'sandwich generation' situation. I worked Monday Tuesday and Wednesday, looked after my grandson on Thursday and on Friday I travelled a 500mile round trip to 'do my bit' over the weekend in helping my siblings care for both our parents.. I did almost everything that could be done by phone. And I was lucky that my bosses were very kind and I had time off to be with both of them for the week and held their hands at the end. I supervised their end of life care. (Probably not the right word but I was the one talking to the dr's and nurses and keeping everyone informed) Dad in the hospice and mums in her wonderful care home.

I totally agree, yet I have spoken to many people in real life who will say that they/their parent must NEVER go in to a home no matter what. Having experienced elderly relatives in both situations I honestly can't see how anyone would prefer to either live alone and unable to look after themselves having to wait for carers a few times a day, or watch their children try to juggle elderly care and their own families/work/lives rather than live somewhere with other people around to speak to all day and carers on hand whenever needed. I know that in reality when most people say they never want to be in a care home they really mean that they don't want to be in a position to need one. I have old my DC that if/when I reach a stage where I cannot manage independently I would prefer them to help me move to appropriate supported living/care home. I genuinely think it would offer a better quality of life and I don't want them to end up arguing over it or feeling guilty about not wanting to become carers.

And I've explicitly told my 3dc whilst I'm of sound mind that no matter how much I protest I'm to go in a home (any home) and they can visit me for an hour on Sunday with a huge cream cake and a small bottle of fizz. Then they are to get on with their lives..this is obviously if I get dementia. Hopefully they'll want to visit more often if I'm okay!

@enoughbananas @SomeGarlic just an anecdote. I recently went on a training course along with 2 dozen care staff from three different, modern care homes. The staff ranged from 20s - 50s in age and all had 2 or more years experience, most had worked in several care homes in their years. The trainer asked if anyone would want to be in their care home should the worst happen and they could never go home again. 100% of them said no. 50% opted for suicide. 50% said they hoped they would to be far gone to comprehend what was happening to them.
when even staff from the best (and expensive £1600 per week) homes with all the bells and whistles and in house and external entertainment provided don’t want to live in the homes - then things haven’t improved much beyond the glossy veneer.

It depends how that question was worded. Nobody wants to have the sort of care needs that require a care home so from that point of view everyone would say they don't want to live in a care home.
However if the alternative is struggling to cope at home, frequent falls/hospitalizations/huge strain on family or rarely seeing anyone depending on set up the answer might be different.
We all hope we will slip away in our sleep at home just at the point where we're about to need lots of help but unfortunately we can't choose that as an option.

@Alphabet1spaghetti2 That is interesting, if a little depressing. Did any of them elaborate on why? To what extent do you think this response is because they hate the idea of being in a situation where they need to move to a home and to what extent because of things the homes should be doing better?
I am genuinely interested to know. If I was in my DM's position (frailty and dementia) I would ideally want to be allowed, or if legal helped, to die. This is not because of lack of care, but due to the poor quality of life that would not be any better regardless of care. I firmly believe that particularly now that people can be kept alive for longer than ever, as a society we need to rethink health care options for the elderly to focus more on quality of life and less on preventing death.
What do you think would need to change, if even the most expensive care homes are not the answer, to provide better care without burning out the next generation?

@Danascully2 I have written the question as it was worded.
if anyone would want to be in their care home should the worst happen and they could never go home again.

Staff are only too well aware that what residents families see, is only a very small snap shot of what happens 24/7 in care homes. It was an illuminating discussion. I have used care homes for family and worked in them. So have seen both sides.

It was interesting (to me) that the more senior care staff present had discussed with their families regarding health care in their later years - they were opting to not take life enhancing or life saving drugs in the event they had heart issues or a cancer diagnosis once they were past retirement.
It was interesting as when I was looking after my in laws who had Parkinson’s and Alzheimer’s, I found myself arguing against having pace makers fitted with the consultant. The pace maker was fitted - but caused much distress for my mil who had to restrained daily from ripping it out of her chest. Something I bitterly regret. Sometimes just because we can prolong life doesn’t mean that life comes with quality attached. I agree with a pp we do need to be mindful of quality over quantity.

I won't be doing anything for my dad.
I don't know what will happen with my mum once her husband dies. She doesn't drive, she refuses to pay into a pension, rents. She does not see her old age as her responsibility at all.

My mil was in a bad way (mentally, emotionally and physically) until my fil finally went to live in his care home full time.

She’s perked up a bit, but she’ll probably never get back her spark.

@enoughbananas
sorry! Didn’t see your question as I was typing.

They all like where they worked - that was unanimous and they definitely loved and cared for their residents. But all felt that the homes were cash cows for the owners and as such were not built for either residents comfort or for staff to easily attend to the residents. Rooms too small to get hoists and wheelchairs around beds and furniture etc. Plus the usual understaffing! The lack of ability for residents to have their own furniture in the rooms due the care home owners wanting a hotel-polished look. Rooms
just way to small for purpose.
The fact that despite sky high fees, entertainment/outings had to be begged for free from organisations or staff paid or had to be sourced from fundraising events. For the ‘hype’ over activities they knew the reality was rather different - most of the day is spent sat in a chair watching tv or asleep in a chair or bed. That the catering provision was inadequate to cater for all the residents diets due to no forethought in the design of the kitchens and kitchen storage areas such as providing walk in fridges and freezers. Poor building design and fabrication was also mentioned. The newer care homes were described as “all fur coat and no knickers.”

They also mentioned that once you’ve reached a point of needing the level of care where you need someone to help dress, wash, toilet and manhandle you, then there is no quality of life. Friends and family drop away. Can’t have pets- which was unanimously agreed to be a huge reason to not to be alive in a care home. You can’t have things done when you want, you are at the mercy of someone else’s timetable and mood. You may not even be able to express your own wishes and yet retain awareness of what’s happening. Some described this as a living death. A lot did say, we don’t allow animals to live like this, why would anyone want to exist like this. Hence the discussion turning to how people will access or not, healthcare as they themselves age and ultimately how they planned their own exits.

it was an interesting discussion.

@Alphabet1spaghetti2 Thank you- that is really interesting. Particularly your point about animals. My FIL was in a council run nursing home and they did have a pet cat- it was one of his few sources of pleasure. He had very high physical care needs as well as dementia and really seemed to enjoy having it around him. Conversely, my DM is still in her own home and really misses having a pet but is aware that she simply couldn't- she would not be able to look after it and would be very likely to trip over a dog or cat. She loves it when we visit with our dog but the time she would really like one around is when she's alone.

I did a lot for my DM (completely shared with my DB) as he didn’t want her to go in a home. In the end I put myself in my DM’s shoes and knew if she could see herself she wouldn’t want to live the way she was so I contacted social services and told them I was pulling out all care. She then went to hospital and eventually to an incredible nursing home.

I regret the amount of time I gave to the mum because it was definitely to the detriment of my late teens/early twenties DC and to my own health.

My friend is going through it at the moment and plans to move in with her DM for her last few months and do everything herself (she’s a retired nurse). She has basically cancelled her own life for the rest of this year.

@enoughbananasIt’s very difficult to know what the answer is. Many working people cannot afford to just give up work when they have a mortgage to pay.

I’m sure many staff do think assisted suicide is best! I agree with them. Very decent homes are quite difficult to find but dm was in a very decent purpose built home and I very much liked the staff, many of whom had been there for years. Fantastic people and we appreciated them. Most of us would like a quick death and not put dc to any bother but some people think dc must look after them, or other relatives, and it’s clearly impossible. Planning makes it easier for all and not making assumptions!

Phoned Adult Social Care last week for a friend An eight to twelve week wait before there is even a phone call to book an appointment for an assessment.

Well it’s a tough subject.
I’ve said it before and I’ll say it again,
We spend far too much time and money keeping people alive when in reality they would probably rather die in dignity,
You would not keep your pet alive in the same circumstances, so why do we have to keep humans alive?
Dragging out their life when they are either in pain or lack dignity,
Riddled with dementia. Costing an absolute fortune to stay this way.
Draining resources from the NHS to an extent that working people cannot access services.
How many times do we hear that ill people are left in corridors or in ambulances because there simply isn’t a bed for them in hospital? How many of these beds are occupied by elderly people who if given the choice would rather be at home with palliative care and let nature take it’s course with pain relief and sedatives.
Care homes make a few people very wealthy that’s all.

Let’s also remember that a lot of relationships end. Lots of adults will be estranged from either one or both parents.
I don’t blame people for not sacrificing their life for a parent who didn’t care much for them as a child.
You reap what you sow and all that.

I agree with all this apart from your comment about ‘working people’.
So somehow only people in jobs are worth saving? So retired people , children, students , those who cannot work for whatever reason are by definition less important and less worth the resources?

This exactly- it’s easy to say ‘oh I’ll do whatever/ only do …’ but often it’s really insidious and before you know it, your life is being consumed with a potential 10-30yrs of juggling life and a high level of care with a parent who has little insight into their needs

Yes, but the medical services want to save lives. I keep having to fight for my Mum not to have things. Constant reminders about the COVID jab. The nurse who wanted to take my Mum off her Alzheimer's drugs because they might be affecting her heart. The hospital doctors who wanted to unnecessarily admit her to a ward, when she was far better off going home.

Having constantly having to fight against (unnecessary) medical care for my Mum makes me feel really awful though. She has a RESPECT form saying comfort not cure, but medical staff seem determined that they must prolong her life, even though it's not in her best interests. Very soon, I'm going have to argue against giving her chemotherapy even though she has advanced Alzheimer's.

And the doctors write on the notes "daughter refused care..." It makes me feel so crap.

@NoCareNoFair I feel so sorry for anyone going through this. My DM was diagnosed with cancer at 99. Too old and weak for treatment - blood transfusion. GP and consultant agreed to manage inevitable death. Until another doctor got hold of the tests and the care home allowed him to talk to dm! I feel they should have referred him to her consultant , but it was a Sunday. I’ve no idea who took the call but he told the member of staff it was urgent and vital. DM, as a former nurse, had agreed to no intervention - but he persuaded her to have a blood transfusion! A doctor said jump, so she did!

I did manage to speak to him on the Monday and ask if he’d spoken to DMs consultant. He hadn’t. He did his own thing. Normally the blood test results went to GP. It was a nightmare.

DM was too weak to even get to hospital. I told the Doctor this and he said I would kill my DM. Dm was 100 by then. I don’t know what to think about the nhs other than I don’t want this type of “care” if I’m 100.

I feel lucky that recently one specialist told DER "if we treat you we would do harm, and only harm." When a different specialist (for a different one of DER's collection of potentially fatal conditions) tried to insist on treatment, I repeated those words to myself on loop. It's not kind to prolong suffering, especially not if you worsen the suffering in the process.
I do feel like my life is slipping by, but then, this is my life: haul myself off to see DER, try to find something to amuse him and distract him, try to make use of the travel time.