Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

@Greigey mine both did but I have lots of other elderly relatives!!

I’ve been to see mum in her care home today and she was exhausted and barely awake and didn’t want any tea. But she’s still “healthy” and stable with no sign of an exit route.

MIL died last year in her early 80s, it was 8 weeks from her first becoming ill with what we thought was norovirus to her dying from stomach cancer. Long enough for DH and other relatives to come to terms with the prognosis, see her and have final farewells, short enough for it not to drag on with her in pain. Up to then she was feistily independent, mentally sharp and active in the church and her hobbies and had no ongoing health issues. She came from a line of long lived women and her own mother got to over 100. DH thought he’d have at least another 10-15 years before having to worry about her like my mum.

Now I don’t wish cancer on my mum, and I wish DH did get to have his mum around for another decade at least. But in terms of endings, I’d rather my mum had the one my MIL had. Mum’s whole body language is “I’m tired and fed up and had enough”.

I would be interested to see the statistics on medical interventions vs outcomes for the elderly (say 75+). I would not be surprised to see a very high percentage have 'unsuccessful' outcomes.

And I do share the envy of people who have had a speedy death. This long drawn out drip, drip, drip is awful.

Yes. My dad had a stroke and died 6 weeks later, initially helped by a cheerfully clueless hospital, and then by us being complete bastards to everyone and insisting on a palliative approach. My mum was and remains too tough - she survived her brain bleed 4.5 years ago but has deteriorated by steps ever since in a dreadful crawl of decline. I think she has been trying to die now for about 6 months but it’s hard to do that in her state.

Watching my MIL deteriorate over 9 years of dementia versus my FIL’s rapid and self managed 4 month decline from cancer also taught me a lot.

I could have written this about my PiLs. Would want FiLs end any day over my poor MiLs.

I hear you all. There are times I wonder if our Dad was hoping he would just die in the rollercoaster year of terrible self-neglect. Could fiddling with the gas have been a subconscious plan to speed things along (which we ruined because it was not safe for him, or his neighbours). When the tired and fed up man here announced a birthday wish ‘to get to 100’ I do not think he meant continuing like he is. It’s just what he thinks hopeful people say. I dread how many years there could be of ‘keeping him alive’ when I see people who can’t speak being hand fed and told to swallow.

No doubt this article was discussed on 🪳when it was published a few years ago.

It’s a very interesting viewpoint that I think is worth us all exploring as individuals, not unrelated to assisted dying (which incidentally I’m hugely opposed to). However difficult I find my parents situation I do know they still get a lot of joy from family, and in my Dad’s case, friends. My mum hasn’t made much effort with friendships in the last 10 years. They’re now early 80s in very poor health, still the thought of them refusing antibiotics or similar treatments is too much, there’s a tiny part of me that wishes they would make that decision for themselves.

The oncologist who will refuse all medical treatment after 75 (even for cancer)

https://www.thetimes.com/article/48336a68-8d1c-11ed-b24e-c1aaebfbdb8d?shareToken=aeddedbf9cbecefd426909f2d0b0a2c8

@Greigey I have read that article and I wholeheartedly agree with him. I have started talking about this with my DH (we are late 50s early 60s).

Dementia is so cruel. My DM has now largely regressed to toddlerhood. DMIL would have been mortified by the terrified, passive person she became.

@Greigey that article spurred me on some time ago to complete an Advance Decision and I have pretty much stated what he has. As long as I have no pain or pain can be managed I do not want interventions. My family know and support me as they have seen how hard the past 10 years have been with my elderly parents declining but refusing to get carers in, adapt their property, consider moving somewhere more suitable. All the while saying ‘don’t put us in a home’. DF ended up being placed in a home after lengthy hospital stays. Both he and my mother have taken on every single life prolonging medication offered but showed complete inertia when HCP and Social workers along with us as family attempted to get them to see they needed help. The old ‘we don’t want strangers in the house’ needs to be made loud and clearly ‘we expect you to do it Blue’. And when I explained why I am not qualified to provide that level of care I am deemed a disappointment and uncaring. My parents were sat in meetings with HCP telling them they needed to do x,y,z or DF would be put under a Deprivation of Liberty and they sat there saying ‘we’ll think about it’ not grasping for one moment how serious things were.

We have to understand that assisted dying has many flaws but prolonging living which is often nothing like living it is existing needs to be addressed.

Its an interesting article. Thinking about it for DM she really changed after she had a mastectomy for breast cancer age 80. I believe the 5 year course of tamoxifen caused her to be depressed and seemed to change her personality. I suggested she came off it early but no 5 years was the course so that’s what she took. In the meantime covid times so she didn’t want to go out for about 3 years due to health anxiety and then was too much in pain from her osteoporosis.

Looking back maybe she shouldn’t have been treated and - with the benefit of hindsight - not sure why a 5 year drug to prevent a reoccurrence was even given. But prior to the op she was pretty hale and hearty for an 80 year old so it would have seemed cruel to deny her the operation.

Advanced directive is on my to do list - even though I still have teens, I’m grateful they’ve reached an age where if the worst were to happen to me I know ultimately they’d be fine.

Did you go for 75 too? Appreciate that may be too personal a question so, so please ignore if so.

Im thinking 80 for when I get round to it. Obviously a lot could change in the meantime!

@Greigey I haven’t specified an age, I think that is something that will be a decision I make when faced with illness. For now I am in decent health but I do have a long term condition that required an intervention about 8 years ago. It will deteriorate and there is major surgery I could have in the future but I will refuse it based on my advance decision. I have enjoyed a good life but lost my 50s and now early 60s to my elderly parents situation. It creeps upon you little by little and then is all consuming. My parents are incredibly child like and have always been quite charming to the outside world but toxic behind closed doors.

I do not want that for my children. I also think the NHS doing major heart surgeries and the like on people in their mid 80s is ‘in my opinion’ a waste of resources. I understand treating emergencies as an ethical issue but planning intrusive surgery on an 85 year old for me is something we should be wondering if it has any impact on their wider life. A 55 year old with the ability to return to gainful employment absolutely yes.

I am aware I have strayed into a controversial topic there so will stop.

Great article (and is it only me who thinks he’s pretty hot…)

My advanced directive kicks in in stages, with the most extreme ‘no treatment’ stage starting when my son is 25 - that’s in 3 years, I’ll be 60. It’s not that I want to die at 60, it’s that if I lose mental capacity after that age it will be due to a very serious health insult and I don’t want to have any life after that prolonged. Like him, it’s not that I think others should do the same, I’ve just worked out what feels right for me in the event that I lose the capacity to decide.

I wrote it before COVID, while working in a hospice, and it seemed to me that dying was becoming the most difficult thing to achieve in the modern era - that it was drawn out to an almost unbelievable, indignity-laden extent. As if pregnancy and labour lasted a decade. I saw a lot of very rapid deaths in the hospital during Covid but now that’s under control too. They keep offering my mum via me the Covid vaccine and I keep saying no.

Interesting discussion and one that has been very much on my mind. DF died at 82 from a heart attack at home. Very much compos mentis although he’d been declining due to heart failure over the last few months of his life and I took him to the GP and a hospital appointment the day before he died and I could see he wasn’t well. In fact he told me he’d never felt so ill in his life that day. I confess I felt relief along with grief and I still do.

Compared with DM who is housebound and totally dependent on us at 88 with a brain condition affecting her mobility, memory and continence, yes, I think he was lucky. Her condition is potentially treatable but involves major surgery and we’ve taken the decision not to treat it which I often feel guilty about but which I know in my heart is the correct one.

I think that this thread is remarkable for the carefully considered and respectful posts which are often bourn from painful experience. Thank you to all who have expressed their views.

DH and I are both planning to make Advance Directives soon (we're hopefully a long way of needing them). I think, like @PermanentTemporary mine will specify circumstances where I don't want treatment rather than a particular age. If I was diagnosed with dementia my personal preference would be have no treatment or vaccines that could prolong my life, only treatment needed to manage short term quality of life (eg pain killers, anti-psychotic medication etc).

My DM is in the relatively early stages of dementia as well as having a collection of non-life threatening other conditions and her quality life is very unlikely to ever be much better than it is now on a good day. Even on a good day, her life revolves around medication (ordering it, arranging collection/delivery, counting out her tablets, organising when she takes each on through the day and what she should eat or avoid before/after taking each tablet) and medical appointments (on average one a week for some sort of check up, monitoring, blood test, assessment, review etc). She refuses almost any suggested social activities either because she simply doesn't like the sound of it, because it might clash with taking a tablet/going for an appointment, or because someone might be unwell and she doesn't want to risk being unwell and missing an appointment. Any appointment (even just a 5min review) requires a lot of discussion and planning and she won't consider doing anything else that day (and wants me with her all day to help her get ready, go to the appointment and then afterwards discuss the outcome and whether she needs to do anything different with her medication/when the next appointment will be). Most of the medication she takes and a lot of the appointments she has relate to prevention of illness or monitoring conditions to avoid them potentially becoming life-threatening. So basically all the time she has left is being spent managing medication and treatment to keep her alive for a few more years that will also be spent managing treatment until her body eventually gives up. Obviously this is her decision to make but I would not want to exist like that. I have tried in small ways to encourage her to focus more on quality of life (eg. eat the chocolate if you enjoy it, risk catching flu if it means you get to have a laugh with old friends) but to no avail so far.

I think part of the difficulty medics have with a 'minimal treatment for the elderly' approach is that they will have met someone like my grandfather. He had a triple heart bypass at 88, and lived until 93. Those last 5 years were (relatively) good; no dementia, still able to get around town and travel further afield (he was at a family wedding 6 months before he died). He eventually died of cancer (for which he refused treatment), so it was a fairly swift end - he was still cycling 2 weeks before he died. He was, I'm very much aware, an outlier. But I suspect that many doctors will worry that if they under-treat, people like my grandfather would die earlier than they might. However the balance of suffering suggests that limiting treatment to the very elderly should be much more seriously considered.

@teaandbigsticks such a familiar story of some of our elderly. I recognise the 5 minute appointment being a full day for you. The last one I took mine to lasted 3 and a half minutes, yes I set a timer. Three hours of the morning was spent trying to persuade her to get ready. Four changes of outfit ‘this isn’t suitable for a hospital visit’/ ‘I look too well to be going to hospital’/‘are you taking me out for lunch after the appointment?’. Then totally not listening to the HCP who was lovely and gave sensible advice which she utterly dismissed because they were not white British so ‘don’t know what they are talking about’.

Gave her clear instructions as to what do do which she ignored completely. She is not unwell she is simply a difficult person. Dropped her back home and cue sad face ‘oh I’ll be all on my own now’. Well yes I live an hour away and have done so for over 40 years. I have a family and also a life which is busy and full of hobbies and interests. Mine never has had any and any she has had she has fallen out with people.

The irony is with my situation is she is clearly frightened of this stage of life but did zero to address her fear just churning out cliches for decades about ‘when I drop dead’/‘I’ll just have a coronary when I am 70 and be out of your way’ *she has no history of cardiac problems. Sorry to vent but this is always a great thread.

I truly have a theory that my parents were very attractive- really attractive and that they have really struggled with aging. They simply didn’t think it would happen to them with their very controlled diet and gym routines. They used to call me boring for all the books I have - they do not own a bookcase - the joy I get from sitting reading a book now I am retired is such a pleasure. I am determined my curiosity will be my super power as I age - I love learning new stuff. My parents just read the Daily Fail and believed the rot it produces.

I’ve done the eat what you like thing. Reality is my mother has lived a life of disordered eating/laxatives/starving herself all in the quest to be ‘thin as a pin’. I tried to speak to her GP about it several years ago but my mother dressed it up as her wanting to be healthy. Sadly the GP, lovely as they were was far too young to understand the obsession with being thin back in my parents day.

Talking of vaccines, the one thing my sibling and I disagree on (good naturedly) is whether to get elderly DM (late 80s, Alzheimers, care home, pretty shitty QofL) vaccinated for Covid and flu. Sibling thinks it helps protect staff and other residents who maybe have a better QofL. So I go along with it. Would be interested in any thoughts.

@Isitsticky great post. I have made it clear I do not want invasive treatment for my father in a nursing facility but I have given clearance for vaccines. I am going to ask the facility for some advice on this point. Also interested in others thoughts. My DF has zero quality of life - but manages to tell me what a disappointment I am - only when I visit alone never with my DH. Which I find interesting if not the story of my life.

I do think some people do not want to accept their own mortality or frailty. My DM had to be persuaded by the A&E surgeon who was going to fix her hip to accept a DNR. I think with DM it is a form of FOMO. The tragedy is that the surgery has triggered the whole decline. 15 months from independant living to a bedbound dementia ridden fragment of herself.

@CalmIsGood great post which sort of highlights why advance decisions may help address the medical ethics faced by medics.

Such a fascinating discussion.

I recall my friend's mother, 91 with advanced dementia. Unable to walk, or turn over in bed. Just about able to feed herself but not to cook. Incontinent of urine.
Barely able to communicate.
Couldn't wash herself or get dressed.

She was looked after at home by her daughter and a series of live-in carers.

Anyway. The unfortunate woman was then diagnosed with breast cancer (at an appt which took two people an entire day to get her to) and the consultant actually suggested chemotherapy.

I mean, just why? WTF?

The worst thing about the situation was that my friend was unable to see how wrong this was, and she accepted the chemotherapy for her DM.

Cue several weeks of ghastly side-effects........ as if the poor woman wasn't going through enough........ and of course she died within three months.

In that situation I blame the doctors entirely. This should never have happened.

But nobody seemed to be able to say STOP. Treatment was available! Why deny it to the patient?

SMH.

It’s so difficult because as POA holder I understand my duties are to enact things as much to DPs wishes as possible. DF has stated many times that he wants to be kept alive- I believe it’s something to do with getting his money’s worth- as much as possible. Indeed during covid when he was a relatively spritely 87 he refused to sign the DNR form if he ended up in hospital, so the last written record of his express wishes is to be revived regardless.

Both he and DM enjoy a good medical appointment which of course requires me now to accompany them as no one can understand DM and DF doesn’t remember what he had for breakfast ( but clearly has full capacity to stay at home). I can see why the NHS is on its knees as we bumble through multiple appointments where they medical professionals desperately try to get DF to remember timelines or DM to keep to the subject rather than going on about DFs failings.

I don’t want to go down the rabbit hole of age related eugenics, but an advance directive for myself sounds like an imminently sensible idea.