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.

Hi @madnessitellyou - welcome! Currently navigating NHS nightmares here too and this thread has so far been a great help and support.

You may want to consider requesting a Martha's Rule review if you are concerned about your DM's condition deteriorating and not getting the right care.

https://www.england.nhs.uk/patient-safety/marthas-rule/

Welcome @madnessitellyou and wishing you strength - well done for standing up for your DM and for yourself and I hope PALS can help join the dots.

@CrazyGoatLady I’m glad there is some outsourcing and you’re holding your boundaries so your DF can see that. Wishing you strength too.

I am wondering whether to make myself known to PALS as off to hospital this week - thankfully outpatient appointment - but patient is going through a phase of refusing medication (even insulin 😱) and has significantly declined over the last 6 months. Given the increasing risk of hypo/hyper I don’t want to appear as if I’m complaining but do I need PALS help to join the dots before a crisis?

We have LPA but I was told this can’t be registered on the hospital system - just take it to appointments (we’ve had to support answering questions and giving consent for treatment for several months now).

LPA is registered with the GP and we have ReSPECT in place with GP and nursing home but I’ve found NHS departments (even in the same hospital) need the dots joined - so possibly hospital need to record ReSPECT/DNAR too?

DNAR was completed previously but in a different hospital in a different trust… so no hope of continuity there.

I just need a small rant about the selfishness that goes hand in hand with aging. The expectation that I as the daughter to 2 elderly folks will step in and fix anything and everything at the drop of a hat. One is in a care home the other has absolved herself, at 72, of any decision making. She has regressed to a point that I'm wondering if she was always like this and being in a couple somehow masked it?

When they were my age they were jetting off on various holidays per year, certainly weren't caring for anyone and still the expectation is there that I will do it.

My father needs to go to an appointment in his local hospital next week. I am 2 hours away and work full time. My mother says I can just take the day off to bring him, losing a days pay. The other options are paying the care home to bring him or she gets a taxi and takes him herself. Both options were laughed at as being so ridiculous, what was I thinking! This is on top of the every weekend list of never ending things that have to happen. I am about to blow a gasket.

@Zucker just tell them that your work won't give you the day off and leave them to arrange everything.

@Zucker I wonder if the selfishness is simply endemic in an older generation who didnt have to provide this level of support to their own parents.

Neither of my parents provided a lot of long term support to their own parents. Yet DB assumes that he and I should provide DM with a constant presence.

Visited DM yesterday and DB was right. DM has declined significantly since last week. She's almost immobile now, living mainly on icecream and tea.

DD came with which was nice as DM slept for the large part so we chatted. Even when DM did wake she seemed unaware of us being there for quite a lot of the time.

Still no sign of GP but if he does finally appear I expect this will be another of 'yesterday's problems' solved. I chatted with one of the carers and she said all they can do now is keep DM comfortable.

I want this to end soon but suspect it could go on for weeks.

I think in medical training these days doctors must be told to ask patients what's wrong rather than reviewing notes. I get it every time with DS as the doctor rests their hands on his giant stack of notes. Its tricky with DM as I know most of her medical info, but she has always hated sharing medical info, so I know I'm missing things.
The selfishness is hard too, combined with the assumption by all the professionals involved that I will drop everything to go to appointments, to provide that continuity of information that DM can't or won't share any more. Thankfully my DM is physically on the mend at last so I'm back to being cut out of everything until the next the crisis.

@GnomeDePlume I don’t know what I can say that wouldn’t be considered crass, but am thinking of you.

I think in medical training these days doctors must be told to ask patients what's wrong rather than reviewing notes

i think you’re on to something there. My GP practice operates a very efficient appointment request system where you complete an online request, it’s triaged very quickly and if the doctor thinks you need to see a colleague you get a call back offering you an appointment. Last time I rocked up the doctor said “what’s brought you here today” as his opener and I was so tempted to say “you read my symptoms and decided I needed to come in, I’d have been happy with a phone consult”.

They also don’t examine patients any more, just go off self reported symptoms. A friend recently ended up in A&E with excruciating pain in their side. They had blood tests, peed in a pot, and an ultrasound, decided it was a pulled muscle and sent them home with painkillers. No one actually poked and prodded them at all. If they had actually examined them they may have noticed the slipped disc that was pressing on nerves and causing radiating pain. Diagnosed by a physio within minutes of getting my friend to take off their top and having a look and a feel. But because the patient self reported pain in the side, A&E leapt straight to liver/ gallbladder/ pancreas, ruled them out and decided there wasn’t anything seriously wrong.

DH has just set off for a stint at the hospital and I'm back at work. I'm more concerned about DH really because he seems to think its on him to "fix" everything.

MIL never drinks any water and then gets dehydrated and confused. DH's answer is he'll go round more often and make sure she has a drink. I think we are propping up MILs independent living much more than is reasonable and its time to hand over more of it to carers.

I think we are in an unprecedented situation.

People in their 70s and 80s now have experienced huge advances in medicine. Things or perhaps more accurately the accumulation of things which killed off their DPs and DGPs are now routinely treated.

So now we have more people being kept alive just to experience slow cognitive decline. But we have no template to deal with this. Medicine says XYZ can be treated so society says it must be treated.

Except it isnt 'society' which has to live with the consequences, it's individuals who are left repeatedly picking up the pieces. The elderly, progressively more confused, relative gets treated in hospital then discharged after a nasty chest infection when quite frankly pneumonia and a heavily sedated death would have been kinder. Instead they are sent home for the cycle to repeat itself. With the elderly relative getting ever more confused and distressed.

I guess Advanced Directives could provide some of a solution. But they have to work. GPs, hospitals, other healthcare settings have to be aware and checking to see if there is one in place.

I may say now, at 59, that if I am diagnosed with dementia, I do not wish to subsequently be treated with ABs for anthing. I do not wish to be offered ABs. Otherwise I might say 'treat me' because DGCs are visiting tomorrow and Beryl is taking me out for coffee and cake at the garden centre. No longer remembering that the DGCs now live in Australia and Beryl is a figment of my imagination.

DH and I are the same age as you @GnomeDePlume and have both agreed that an old age of cognitive decline and adult children being run ragged trying to support us is not what we want and we've talked about what treatment we will want to accept in the future.

To be honest my main concern is that one of us will die before either of the PILs.

My Mother in law (81) loves to tell us that dementia / alzheimers didn't exist in her day so there must be something in the air/water giving all of these old folks the dementia now. It's much more likely that people died much earlier from pneumonia etc.
I'm not going to do the trip to the hospital and let things fall as they will. The world may end so blame me if that happens this week!

Waving at all of you; reading and nodding along but never enough time to reply. @MysterOfwomanY your taxi story gave me a hard relate moment; and @Zucker and @CrazyGoatLady yes, the selfishness of a generation who did not care for their own but have all the expectations is quite something.

M had another fall this weekend but hasn't wanted to bother the doctors (she has severe osteoporosis so falls are scary) so I'm at just leaving her to it TBH. She's also refusing to register her LPAs in case DSis and I "control her life." I have that sense of everything we try to sort by the time we get anywhere near it her needs have moved on. Every time the phone rings I have a real "oh no what now" moment.

@GnomeDePlume I think you have, once more, hit the nail on the head.

My parents did absolutely no caring for their elderly parents. All of my grandparents lived fairly independently until a short physical illness took them fairly swiftly. I remember a few hasty journeys to visit them in hospital at the very end of their lives but other than that, as we didn't live nearby, we visited them a few times a year but there was no expectation that my parents would take on any responsibility for managing their healthcare or other aspects of their lives.

I suspect that to some extent it was perhaps easier for my grandparents' generation to manage things for themselves. Their doctor's surgery was just down the road (rather than a few miles away in a central medical 'hub'), they had one or 2 known GPs who knew them (rather than multiple GPs in a large practice who need to be told the history each time), doctors would routinely make house calls and there was expectation to manage things online (which my parents stubbornly refused to try to do). But it also seems that between my grandparents' generation and my parent's generation unless you have a terminal illness it's become almost too difficult to simply die. I know that to people outside this chat that will probably sound uncaring but I really don't want to end up in my DMs situation and nor do I wish my children to end up where I am. My DM's life now revolves around taking her multiple daily preventative tablets, attending medical appointments (some to assess for possible dementia but mainly to check on her many non-life threatening medical problems, assess whether her medication is correct or look in to new, but minor, health concerns), planning medical appointments and discussing possible symptoms. All of the health concerns etc are real, it's not just some sort of health anxiety. but are just a result of her age. It seems that the sole purpose of her life is now to keep going for as long as possible without any consideration of quality of life. The other week I suggested taking her out for the day to visit an family member that she often says she misses but she refused because it wouldn't fit in with her routine of morning medications which she claims the doctors have told her are vital. All of this is, of course, her choice but I want to make any plans I can to avoid it being the choice I make.

I think my mil is upset / off me and frankly , I'm delighted . We were getting several phones calls re her shopping , the Drs , hospital appointments , her adult grandson not doing her gardening ok and the neighbours not being like they used to be 40/50 years ago ( all whilst we are over 100 miles away ) so can't be at immediate hand to sort out these problems , to receiving barely any calls because she's now calling other family members about them . Bliss for us , not so much for them .

@teaandbigsticksand others what I love about these threads is how honest we can be.

I would genuinely rather be dead than in the state DM is now, and I hope if she was of sound mind, that’s how she would feel too. She rarely leaves her bed, has a procession of carers to take her to the toilet and her main source of enjoyment seems to be saving up bits of paperwork to torment me with and/or telling me all the things that are wrong with DF. It’s horrible and it’s so undignified as she will only wear a scanty nightdress and keeps it hoicked up for some reason so you can see her Tena pants. When she had her relatively minor fall 10 months ago, we had no idea this situation would become permanent. She eats very little, hasn’t moved much in that period but on she goes. Not only must her life be a living nightmare but between her and DF, they’re making mine one as well.

I have said repeatedly to DH that I would gladly go into a care home when needed. But as he doesn’t want to and sees me as an extension of himself most of the time, I will need to try and make that happen when I feel it’s appropriate. At least then DS would only have DH if there is any care needed.

None of our parents did any caring. My mum's had emigrated and both died relative young of sudden illnesses and we lived a couple of hours from dad's before my parents had a car. DHs paternal GM died quite young after a short illness and his paternal GF died in an accident. His mum's parents came to see Sunday lunch a couple of times a month and teen DH was sent round to mow their lawn. That was the full extent of their caring. Didn't stop FIL lecturing DH about how they'd "done everything" for their parents and how he didn't do enough and if only they'd had a daughter instead of 3 boys how much better everything would be.

To be fair to DM and DF, although all of their parents died relatively young, they did care for a great aunt and uncle who lived until their mid 80s. DM bore the brunt, even though they were DF’s relatives. Once my great uncle was widowed at 84 he went off the rails a bit and caused them no end of stress. However, I remember (this was the 1980s) that whenever DPs wanted a holiday it seemed to be easy to check my great uncle into respite.

@Thaawtsom I know what you mean about the 'What now' feeling every time the phone rings. I am currently sitting in my car waiting for a work meeting (for once the traffic was kind to me) and have just returned a call to DM after almost constant ringing on my way here. She is trying to call her sister but 'the phone won't work with her number'. The same phone she is calling me from. This is apparently my problem to fix as I bought her the phone (5 years ago). She often reports problems with the phone and they are always because she has pressed a random button and doesn't recognise what to do. I have tried finding a simple phone for her to use instead but have not found any that can be programmed with all her frequent numbers but are simple enough for her to learn to use (she gets very confused if asked to remember more than one step). I have set up a simple landline phone at her house for her with pre-programmed buttons but she is not there and B doesn't have a landline. I have asked her sister to call her, but DM is very cross that I won't go over right now and 'fix' her phone.

@GnomeDePlume that's interesting isn't it that they didn't have to provide support like this to their parents but expect it from their children!

I think a lot of what you're saying is probably right @teaandbigsticks - modern medicine has made it possible for people to live longer in a very frail condition and we are probably not set up well as a society to support that.

My parents didn't have to provide care for their parents either, although in their cases it was because they moved several hundred miles away from their home area when they married, leaving siblings in their home towns, DF had a sibling who was a well-off SAHM and took care of his parents (DGF went from all OK to dead within 6 months with cancer and DGM spend her last few months in a home following a stroke but was mobile till her heart gave out), DM had a sibling who retired young (police officer) and took care of all their parents needs, again DGF dying fairly quickly after a stroke, DGM in a care home with dementia. So my parents, who also have excellent private pensions were retired at 60/65 with fully independent children and no elderly parent care and spent 5 years travelling the world. Whereas we, approaching 60, are nowhere near retirement, have younger children who are not fully independent (SNs) and now parent care too. My DF is absolutely distraught that he is so fully dependent on others (care home with me doing all the admin) but my mum has never made any effort to learn how to do finances, operate her gadgets etc and is now weeping and wailing about how awful it all is while I pick up the pieces, we aren't at the stage of personal care yet but I can see we might have years of this ahead of us.

My DMs DPs actually did live to the ripe old ages of early 90s and 99 but DM did very little of the care. There were many siblings and one lived with them for all of their lives and must have provided a lot of personal care particularly for DGD who was able to do very little after a car accident aged 91.

However my DPs moved country when DGPs were in their 80s and before then DM generally visited once a month with me in tow and cleaned their house for the day. DM moved into a great new career at exactly the age I am now, instead I am heading into a low paid admin role because it’s part time and all I can cope with just now with the impact as an only DC of their decline.

They had choices along the way - how many DCs to have, what changes to make to their house as they aged, what levels of home support they wanted to get in. The only choices I seem to get are choosing between drowning in a sea of guilt or resentment.

I certainly think my mother’s full awareness that she hadn’t had to do the grind of care for her parents was part of what made her the kind of woman who said ‘when I go dotty, just put me in a home’. Not that that was a simple process, but it meant that the grind of misery and guilt was significantly reduced for us. She knew it wasn’t a perfect solution but knew also that at this stage of life, nothing is. It was certainly noticeable that she did LPA (finances) without any issues but my dad would barely have known what that was. We were lucky he did an old school death of ‘doing fine- stroke - 5 weeks in hospital - over and out’. Almost enough to make me take up smoking tbh.

I think many of us are in the same boat. My parents were both only children and by the time they were my age, both sets of parents (who lived no further than a mile from them) had died and like @ElderlyDilemmas’ went on cruises etc.

Our own children are almost financially independent of us (eldest finishes medicine this year) but youngest still lives at home.

I am bitter that I won’t/and don’t have the same freedom they had. I did move away, but for the last 4 years have gone up every 8 weeks staying for 4 days at a time. Believe me, I dream of being able to pop in.

Goldenballs is being a dickhead again. He thinks he's shown up my incompetence but he's actually managed to do the complete opposite. I suspect the care company manager may be getting through a lot of popcorn.