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

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.

@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!

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.

@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.

@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.

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.

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.

@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.

@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?

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.

@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.

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!

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 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.

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.

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

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

I agree, but if siblings disagree it’s difficult .

I don't know why "a home" is seen as a last resort or final insult. The one my mother went to was lovely. I'd have liked her to have moved there sooner, she was cared for 24/7 with all her medication and hygiene properly managed.

It would've cost all the money but we weren't well off in any case. The funds she left us would have paid for about two years there.

The council-funded places we looked at were nice, too. Slightly less well run, something of an air of managed chaos, but with an equally nice atmosphere, helpful staff and happy-looking residents.

The bad old days of warehoused elders sitting on hard chairs all day were more than half a century ago. A "home" is much better than shuffling slowly around the ground floor of your house, forgetting your meds, failing to eat well and to keep yourself clean.

Reading this thread has given me so much solidarity.

I’m just starting to understand that this whole situation is a horrible first part of the grief process. The moment when you switch places and lose your parent. God, I feel so sad about that.

We also had a deluded sibling abroad who was controlling and demanding and an absolute nightmare while dealing with MIL. MIL had high needs but was a delight. It was truly awful.

@enoughbananas same here. My DM had a medical episode 5 years ago and came out of hospital on palliative care, doubly incontinent and unable to walk so is in a wheelchair, hoisted from her hospital bed etc. 4 x carers a day and my DF running the house i.e. cooking/cleaning/washing etc. He's 83 and she's 79. When it all kicked off, I did everything for them both with regard to life admin and getting DM home (as that is where she wanted to die), liaised with SS, district nurses, GPs, hospital clinics, arranged care package, arranged wheelchair/hoists blah blah...have sorted a wheelchair assisted car, car insurance, house insurance, car tax, sorted PoA, benefits, blue badge, Tena pad orders, prescriptions, food orders, hearing aids, eye tests...plus visiting 3 x week. You name it, I did it.

All this plus working, plus 2 DC (now young adults) but still supporting them, a horrible menopause, mental health took a nose dive, DH dealing with his own DP's and their issues and it all became too much. Had a bit of therapy and put up some boundaries and dropped to 2 x visits a week but still do all life admin...well, you'd think I'd cut DM's arms off.

I've started to dread my 2 x weekly visits but I made a rod for my own back by doing SO much for them in the early days because it was terrifying to hear the news that she would die within weeks of coming home. The more I do, the more they kind of expect me to do...it's exhausting. But I am putting things in place to restore some order now.

@thedevilinablackdress I have made it very clear that this won't be happening. The suggestion came because I said we should look at paid care options (including residential care for later down the line) because I work and don't live nearby. I have learned not to give any reasons for not doing more as sibling and others involved take it as an invitation to find ways around whatever I mention.
@Brunchatstephanies I've also found the expectations, and push back when I say no, have increased the more I do. I was never someone who spent a lot of time with my parents as an adult (sibling did) but when there was a real crisis I dropped everything to stay for weeks to help, then agreed to help with lots of smaller practical things (shopping, follow up medical appointments, cleaning etc) 'just to get them back on their feet'. Rather than appreciating that I'd obviously done a lot and must have left other commitments at short notice, the reaction seems to have been that I clearly CAN do more if I really want to so it's unreasonable and uncaring to say no to anything. I don't blame mum for this as she is in the early stages of dementia and I really don't think she can understand the implications of what is being asked of me (she just sees it as 'enoughbananas just came and stayed with me before so we can just do that all the time and everything will be fine'). What has surprised me is the uncles/aunts/cousins/family friends etc who have stepped in to 'encourage' me to find ways to do more. It's been quite an eye opener- people who were in almost daily contact with me and claimed to care have not spoken to me since I started saying no. I am still doing a lot for mum so it's not like I have walked away- just put up some healthy boundaries.

I feel I sleep walked into caring for my late mum and eventually she moved to a home (lived there for about 17 months). It was the worst time of my life. I was middle aged, struggling with menopause, had 2 teens. I lived across the road from her and wasn’t working which bought its own challenges. Mum apparently had capacity to the end but I’m not sure she really did understand or remember the nature of her needs. She regularly told everyone things that she wasn’t doing, that she hadn’t been able to do for years. When I told her social worker I couldn’t cope any more, the advice was to stop but it really wasn’t that simple, I was ground down by years of being guilted by both parents. She would just keep phoning every couple of minutes until I responded. Even on her death bed she managed to be horrid to me though she wasn’t herself any more. I was her only child, no other living family though judging by the arguments around care this may not be a bad thing. Once she moved to the home, though she wasn’t always happy and I was still called upon, I was able to put some distance between us which I really had to before I collapsed completely. Caring for her gave me more anxiety and stress than either of my children did and, a year after her death, I don’t think I’ve really fully recovered.

I completely agree with pp about how capacity is determined. I’m not at all sure my mum had a real grasp of how things were when asked what she could do. I had many confused phone calls from medics when she told them she lived alone doing all kinds of things after being brought in by ambulance from the care home. She was convinced and was convincing. She had no real idea of the impact it had on me and her grandchildren, nor was she accurate in her assessment of what she could still do. I got the feeling no one wanted to say she didn’t have capacity owing to what would follow from that.