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?

What is the point of having RESPECT instructions set out by a patient - if they are routinely ignored? I’ve seen this described many times on the Elderly Parents board. It’s also upsetting to read of very elderly patients who are clearly dying being treated unnecessarily to the extent of causing them further harm and distress.

Is it the point at which the elderly patient has lost capacity? My mum, 95 when she died last year, was deemed to have capacity to the end (though I wasn’t always completely sure). She was offered treatment for yet another problem (she had multiple health issues for several years as well being very frail) but declined, apparently knowing what the outcome would be. She didn’t want yet another hospital admission. She died a couple of weeks later being nursed through end of life in her care home. I agree that these RESPECT instructions are pointless if ignored with treatment causing more pain and distress.

RESPECT is only about resuscitation isn't it?

No respect also goes into how much care /treatment you want in certain scenarios. It’s about as much use as a chocolate box in reality if you get the eager beaver who believes everything is worth a try despite the prognosis and likely harm the treatment itself will impair quality of life.
Your best option is to have all the paperwork in place stating your wishes and an absolute Rottweiler of an advocate beside you. The paperwork protects them, whist they protect your wishes.

@Alphabet1spaghetti2 The Doctor who spoke to mum just had the blood results. No contact with consultant to discuss anything. Mum could not go to hospital and probably couldn’t withstand a transfusion, which would have improved matters for maybe 2-3 weeks. No wonder the nhs has no money! When my grandparents died, there’s no way this level of intervention would have been considered or offered. We won’t accept death is inevitable at 100! It’s ludicrous and not managing end of life appropriately.

@MeetMeOnTheCorner I'm so sorry to hear that.
As a society we have become divorced from the idea that death is inevitable for everyone. No one can avoid it indefinitely. We do have the ability to prolong life, but that should mean a good life. Conversely we also have the means to provide people with good deaths. Not premature, but a good death when our time comes. I don’t think a good death lies in multiple hospital trips which achieve nothing, procedures which cause mental anguish or physical discomfort, or even dying in hospital. Just because we can doesn’t mean we should.
Professionals in health care also need to really hear a patient and their family/advocate and take two minutes to consider the broader picture, I do wonder sometimes if Drs etc just see patients as a problem to be solved, a number, and not an individual needing empathy and compassion. It does mean a lot of intense and hard conversations, which might be easier if as a society we began to talk about death more like we seem to discuss football. Not only would it help those who are facing their own, but it would help those who will be grieving.
There was an article in the guardian regarding the rise of death doulas, maybe things will slowly change?

@Alphabet1spaghetti2 I had had very good and sensible discussions with the GP - he was excellent. A care plan wax agreed with the consultant. It was agreed a blood transfusion wasn’t on due to age and frailty. DM understood what was happening and why. What I don’t understand is why another doctor who knew absolutely nothing about DM or her case, decided he must speak to DM directly in her care home. Managing the situation afterwards was truly awful.

I can’t speak for the dr, but I can guess at several reasons why they went the route they did.

1. didn’t read the file, maybe due to lack of time or maybe the notes weren’t visible to them. Technology is all knitted nicely together in the nhs or maybe a button wasn’t toggled on the case file to allow all to read them.
2. arrogance. In so many forms.
3. any life is better than non attitude.
4. an understandable fear of not wanting to be quizzed as to why something wasn’t done that might have achieved a better outcome.
5. not a lack of knowledge - but a lack of understanding and insight into the effects and ramifications of diagnosis.

There are times when I believe that every single person should have to do work in a care home, for say 6 months, and especially so if you are going in to any type of health care profession.

fwiw. I got over ridden by a consultant and care home in deciding to put a pace maker in dementia ridden mil. I didn’t think the benefits would actually help her. She was already in a care home, the procedure really unsettled her and she had to be constantly watched and restrained daily from ripping it out of her chest until she died. Her quality of life wasn’t enhanced. Her family had to watch her deteriorate for possibly longer than nature intended. Resources were wasted.

I had her respect form and held both LPAs. Should have been more Rottweiler.

To some extent I can see why doctors might refer even a very elderly person for tests/treatment in the absence of a very clear RESPECT document or next of kin request to avoid potential complaints etc. I have a friend who is usually very practical and no-nonsense but she was livid when her 96 year old mum was not given extensive tests and treatment when she developed lung problems, rather than just pain relief. She went from slightly frail but happy and well, to gone within a matter of weeks. Friend is adamant that this means she should have been admitted to hospital and given lots of tests etc and could have got better. My view is that she had an enviable end- a very short illness and being allowed to pass fairly comfortably at home. Similarly my sibling is full of stories about how the NHS failed our DF (who lived with a chronic condition for many years and was quite elderly) by not keeping him in hospital until he was 'properly better' and the ambulance service not getting to him quickly enough to resuscitate. In reality he hated being in hospital and knew that eventually his condition would cause his death. I firmly believe that he down played his symptoms to avoid sibling persuading the Dr to send him back to hospital

It's very hard having to be Rottweiler demanding that doctors DON'T treat your parent.

It would be much better if everyone was on board about not testing/treating someone in their 80s with advanced Alzheimer's and Cancer.

Anything that will cause a swift, painless death or the closest thing to it should be embraced at this stage. There does seem to be any help, guidance or support with that though.

@Alphabet1spaghetti2 He certainly didn’t read any notes! Or speak to anyone who knew what the care plan was. Just looked at the blood tests. Weekend locum probably but a disaster! Not sure there was a Respect document but me, the home, GP and consultant had agreed a care plan. The issue was test results bypassing the GP because it was a Sunday. Normally results came in on a Monday or Tuesday direct to GP.

I dont know what will happen to my elderly 82yrs mum and nor does she . She has made no provision for old age in terms of plans or finances . She has lived her whole life putting herself first and sod everyone else . I will not be her caregiver as she never cared for us . Left the family home for another man when I was 6 and my brother 4 leaving dad to raise us as a single parent . I see her briefly once a week and that’s it . She has always been a very difficult nasty woman and it’s hard to know if any deterioration is dementia or her horrible personality . She refuses to believe anything is wrong , after 4 marriages is now totally isolated but says she’s happy like that . At the moment she has a gardener but no other help . That will change as time goes on but she says she lives day by day and no one knows what the future holds . Fair enough but with no money , no friends , no in touch family she’ll have to throw herself at the mercy of social services , if of course she’s well enough to see she can’t manage .

Some of the sheltered housing / homes are great. I’ve been to two this week and the women there are having a right laugh.

The thing is it's all very well planning in advance, but if FIL had said no cancer treatment, no life enhancing drugs after retirement (retired at 65) he and we would have missed out on 25 years of happy healthy life (he has just come through successful cancer surgery at 90 and lives alone with a bit of family support for housework and admin.

I'm heading for retirement and will be taking every test and treatment offered while I am generally well (I want to be fit and healthy for as long as possible both to enjoy retirement and for my DCs and indeed my parents and FIL). I might feel different if my DCs were fully independent (had them late and both are ND and still at home/uni) and my parents were gone but they are both still alive, neither with dementia. For DF (in a home) we are at the point of no more treatments unless they are short term and non-invasive (oral ABs for example) through his choice and our agreement. For DM she is at home and living independently so she is happily taking blood pressure tablets having all her check-ups and living much as she did in her 60s/70s so we support that too.

I will be saying to my DCs that should the need arise move me to a home rather than run yourself ragged looking after me in my own house though. That I do agree with.

I’ve done the boiling frog/stretch myself/breakdown thing. I ended up dropping a day at work and am still on a 4 day week even though DM is now in a very good care home. Some weeks I use the day to travel to see mum, others I do the admin.

DM sacrificed herself for her own mother and wouldn’t have wanted me to do the same, but took no actions nor made any plans for herself to make her own aging easier. Looking back I think she had very mild cognitive decline for many years that made it all far too hard/scary to think about.

Her care home is excellent - the opposite of all fur coat and no knickers. Her room isn’t en-suite, but she needs assistance to go to the toilet anyway so it makes no difference to her. She has a hospital bed and air mattress and the home has all the necessary equipment. Yes there are places where the bashed woodwork in the corridor needs a lick of paint, but it’s spotlessly clean and they have enough carers for them to sit down and chat with the residents when they are upset or restless and a kitchen that does home cooked and tailored food for residents. It’s a small independent place run by people that do genuinely care. One favourite carer left recently as she’d got a qualification and moved to a new job to start that career. I was surprised to see her at the home in uniform the other week and she said she missed the residents and so asked to stay on the books and do the odd cover shift at the weekends. It’s that kind of place. We’re very lucky.

@funnelfan You are describing the he my DM went to. Great staff retention and people with time to talk to
mum. I really think not all owners are greedy! My DM was reluctant to have any help at her own home, and I found this frustrating. Dc cannot do everything but I heard about many who did, including a cousin who just about lived with my aunt despite having her own house on the same estate. I’m no
martyr I’m afraid.

Mil has refused to go into a care home, She has carers but she is still very demanding - her needs are destroying all the family relationships-she is only vaguely aware of this, she has become very selfish and stubborn. We try to remember who she was. Dh and I have savings to provide for our care needs - I hope we are a lot less demanding.

My mum is in a care home. They are very kind there and she has made a good friend, with a similar level of senility. She was not a selfish woman at all, but she became selfish and demanding when she got very old. I was not willing to give up my life to look after her and I had become irritating to her anyway! She was furious when I insisted she went in a home "temporarily" during a period of ill health. But she is happy there now and will probably live to 105, so thank God for that. It will use up all the value of her house but it's worth it. I have my state pension and my freedom.

It’s hard when they become incredibly selfish - we say no to mil when it’s enough, sil never says no and she gets annoyed at us for saying no - the whole thing is a shit show. On the other hand my mother was always selfish so we had no qualms (or guilt) about putting her in a home - and she has had to learn to be nice because when she’s rude to the care staff they won’t speak to her, she’s finally learned that she has to be polite to people!

My DM is the opposite and would likely end up sitting in her annex feeling sorry for herself and “enduring the silence”.
I love my mum but have come to realise there is a degree of emotional manipulation which means some physical distance between us is a good thing.

I think this is the problem we face rather being the solution - mil lives too close to sil and depends on her too much, has her running around in circles, tending to her overnight etc sil never feels like she gets a break and it has created an unbearable situation for the whole family.

Late to the thread but totally agree with you @enoughbananas- I live a day’s travel away from my DM and spend a few weeks a year staying with her. This enables my siblings, who live nearer to her, to have a break. But it doesn’t really work as one of my siblings is currently saying she can’t maintain the level of support she’s been doing (fair enough). I also find that after a week of being with my DM, I find it difficult to reconnect with my DH. The repercussions are huge.

Its desperate. Ive done every Saturday since January. Im tired. Told her I call mid week. Im in a school so Im off. Major mood on. Had to tell her stop tell me what to do Im 50s. Dont think people realise taking on elderly its years of this crap

It’s relentless, and really can’t be understood unless you’re in the midst of it