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.

The number of posters who are managing aggressive, communicative or just plain dysfunctional faeces smearing and poos being dropped on a recently cleaned carpet etc, over months and years, should be a wake up call to anyone contemplating real care.

Yes, I think having to deal with a Code Brown crosses a line into things you’d never want to do for another adult. To be fair to him, DB dealt with a couple too and went into Dad mode from his time when his kids were toddlers. We made a pact never to do it for each other when we get old!

I think the stage we have got to is that the person I visit each week isnt DM. DM was going when she moved into the CH. She is long gone now. What we have left is a relative stranger with the emotional regulation of a toddler. Another tantrum incident yesterday which involved hitting and scratching.

Even if an advance directive had been in place for DM I'm not sure this stage could have been avoided. The last properly sane conversation I had with DM was in A&E waiting for her to be moved to a ward anticipating surgery for a fractured hip. At that point she had the capacity to consent to surgery.

@MayBeee I agree. You also alluded to the other line people with no experience of this trot out 'They looked after us when we were children, now it's our turn to look after them'. Often said rather pointedly to me someone who is discussing possible care options by someone who occasionally helps their independent older parent with her shopping.
If someone wants to, and is able to, become a carer for their elderly parent that's a big choice to make, it's not an obligation on all children as part of the deal for not being abandoned as a child. Also, caring for an elderly parent with significant physical health problems and/or dementia is far more difficult and requires far more sacrifice than looking after most children. My experience is of being expected to take responsibility for the care of an elderly parent with dementia (but still has capacity I can't make decisions for her) who refuses to consider any external help, with interfering family members and constant complaints that I should be doing more. This is less like looking after a small child and more like being made responsible for the safety and happiness of a grumpy teenager who hates you and thinks everything is your fault, overseen by their know-it-all friends who like to tell you how much cooler everyone else's parents are, and the catch is you are not allowed to over-rule any decision they make or tell their friends to F off. Oh, and you are also obliged to mop up after the (actual and metaphorical) mess they have made.

@teaandbigsticks I hear you. Have you met my brother?

@GnomeDePlume I am sorry that sounds so hard it’s amazing how tenaciously the human body clings to life, even when the person inside is long gone.

On the toileting issue, I have thus far avoided having to wipe bottoms for DPs, but it feels like it’s just a matter of time.

I don’t understand the state’s obsession with keeping people at home to keep their independence once it gets to the stage where they can’t wipe their own bottom, or know when they need to toilet. Surely the very definition of not being independent is the inability to control your most basic functions.

Even AI struggles with the reality of it. I spend too much time plugging in scenarios and concerns to copilot. I am very worried I will arrive and be in the position of having to clean up after a DP. They do have multiple carers but of course there are gaps of many hours in between. I asked Copilot and it said I should call up social services and retain my boundaries, like there is a secret army of poo cleaning fairies ready to rush out for Code Brown situations.

DH visited the care home yesterday but they haven’t got vacancies until mid March and would need to carry out a home assessment before proceeding. I am unlikely to get DPs consent for that so instead am ringing up the home care agencies to see what their lead times are for emergency provisions as the most likely scenario is that one will need to go into hospital and DM definitely couldn’t cope on her own with just the 4 daytime carers.

@teaandbigsticks I have also found that just as my DPs have reverted to Kevin the teenager, I also struggle with this new dynamic and become obstreperous and bolshy myself. It’s a glorious dynamic, so much fun, such a shame I haven’t got a delusional B to add into the mix.

@rookiemere You are welcome to borrow my delusional B - feel free to keep him for as long as you like!

I don’t understand the state’s obsession with keeping people at home to keep their independence once it gets to the stage where they can’t wipe their own bottom, or know when they need to toilet. Surely the very definition of not being independent is the inability to control your most basic functions

@rookiemere Cost to the LA. Cheaper (for them) to provide the 4x daily care crew and leave someone lying in their own waste in between visits. They even offered to provide mum with a hospital bed to stop her trying to get to the loo on her own.

Of course, we look at it from a bigger picture and I knew that once we factored in the NHS costs from the inevitable multiple hospital visits arising from such a situation that in terms of both money and dignity, a residential care home was needed. (she’d have been climbing out of that hospital bed like an adventurous toddler out of their cot, then falling when trying to walk).

I think it’s actually quite unfair to land this on the local authorities given how the landscape has changed in terms of people living longer with more chronic needs. We need a National Care Service with state run care homes as well as the NHS state run hospitals. And joint responsibility for respite and rehabilitation centres, nursing homes and hospices. Yes it would cost to set up but I’d bet the money would be returned in a couple of years in terms of solving the bed-blocking crisis in the NHS.

Totally agree @funnelfan . Politicians run a mile from these realities but the recurring NHS winter crises and A&E / ambulance shit show might finally hit rock bottom, from which there is no other option than massive reorganisation. The other obstacle is cross party unwillingness to re-nationalise services that used to be provided by the state but are now private, care homes included. It would save a bloody fortune in the long run.

I read a newsletter from feminist writer Caroline Criado Perez this week who noted that there is a recent buzz around the contribution AI makes to the economy from « unpaid work, » and she was pointing out that they mean men writing software for open source systems rather than women propping up care systems everywhere. Unpaid work has traditionally been « too hard » to measure for contribution to GDP but when it’s men doing it suddenly it should be included. She also noted that in terms of domestic work and the propensity for AI to automate some of these tasks, men were much more bullish than women in their outlook. No shit. Would AI even know what a Code Brown was, nevermind actually deal with it?

We need a National Care Service with state run care homes as well as the NHS state run hospitals. And joint responsibility for respite and rehabilitation centres, nursing homes and hospices. Yes it would cost to set up but I’d bet the money would be returned in a couple of years in terms of solving the bed-blocking crisis in the NHS.

100% agree.

Just catching up, nodding along to many of these comments. I have in the past week pretended I have been drinking alcohol to avoid having to drive over NOW on Saturday night having only got back from Mum's a few hours earlier. The constant drip drip drip of being asked to sort the same thing over and over when it's not urgent, not all that important and CAN WAIT TILL MY DAY OFF. I have also in the past week used the F word in front of my mum for the first time in my life in relation to the latter (luckily she's deaf and doesn't listen). And we are only at the very start of all this, Dad fast tracked from fully independent to care home by means of a serious fall and that has been the easy part, he is a sweetheart. Mum on the other hand is such hard work but was managing OK till Dad went to hospital and never came back. Sending strength to all.

Excellent post @funnelfan. DPs are self funded so could avoid all of the indignities they are currently facing but don’t for inability to think rationally any more and a system that seems to believe propping up the welfare of two extremely elderly unwell people at home is worth more than the lives and taxes of two working age people. All it would take is one doctor to suggest that maybe now was the time for them both to consider a home and I think they would and should go, but instead we have these farcical discussions around capacity as if wanting to be at home was the same as actually being reasonably self sufficient.

Oh and on the AI poo thing, I suspect the issue is because AI content is mostly fuelled by men. DH came home when I was on the phone quizzing a home care company around their lead times for in home overnight care in case DF has to go into hospital. DH said oh I can stay overnight which is of course very kind of him. I asked what he would do if DM needed to do a poo, or indeed was too late to prevent an accident and he said wait until the carers come, which is of course awful and means it would need to be me.

There’s just no way the average woman person would ignore a trail of lumps of poo tracking across several rooms and the associated clothing and personal hygiene issues. I think most of us would try and assist even a strange elderly person within the limits of everyone’s dignity to be at least comfortable and limit the situation getting worse until help comes.

There’s not that many people who have never had either kids or cats or dogs and so have had to deal with another beings poo before. It is grim but NOT dealing with it can be even grimmer.

@funnelfan DH can be a bit flippant so I hope in reality he wouldn’t leave it if it comes to that.

Politicians are, for the most part, male and middle class. They dont have to deal with poo, vomit, urine because they have other people (wives) to deal with that when it relates to their own children.

When it comes to the elderly I think there is a strong element of 'nice, middle class, people dont get dementia'. The worst that happens is that they get a bit dotty. Cheerful news pieces which show elderly people enjoying a sing song together reinforce this notion. Nothing is said about nice, middle class, people throwing punches, shouting abuse because they dont want to be cleaned up after a toileting incident.

The problem of cost is hidden. It is divided up into different siloes. The cost of care at home is only seen in terms of the number of care visits. The cost of repeated hospital admissions eg because of falls or spending too long in soiled clothes resulting in infection is missed.

The other very important point about the mantra

"looking after our parents because they looked after us when we were children"

is of course, our own age.

When we had children, we were in our 20s and 30s. We were generally active and could fit multiple things into a day.

When our aged parents need to be cared for, we're in our 50s and 60s.
Hell, I know a woman of 74 who is caring for a DM of 96.

We're slowing down ourselves. Many of us are already retired.

I don't know about the rest of you, but I've had it by 6pm these days. I just haven't got the energy to go on and on all evening.

We also have our own health problems as we age. I've got arthritis and osteoporosis.

I'm not physically capable anymore.

The effect of caring for an elderly relative on our own health is extreme and severe.

Caring knocks years off our lives.

So agree, @TheBroonOneAndTheWhiteOne. I was on this thread for years, mainly lurking, while MIL was declining. She lived to be 104 and died last year. DH is 77 and has just had a heart bypass- I’m sure the stress of caring advanced his heart disease.

@TheEldestChild yep, drives me mad why so many medics/professional carers etc can't TEXT LIKE NORMAL PEOPLE. I mean texting has been around for 30ish years and in the UK, mobile phone numbers are easily identifiable!

I too know some surprisingly well preserved elderly people. And yet spent the day today with someone still in their fifties who has had absolutely awful luck health-wise and so much of what people have been saying here applies.

I just hope to be able to find some way of making what I can of life, and to have a (probably younger) relative with the common sense and humanity to make the least worst calls (I know my OH would be trustworthy now, but when we're both 87 who knows?!).
And I hope I'll listen to whoever is supporting me/us and I won't be a dick to them!

Hi, I'm joining the cafe. Caring for mid 90s DGM with heart failure, RA and other physical ailments. No dementia, but definitely Kevin the Teenager! Navigating the merry go round of hospital admission, rehab, discharge, home care, only for DGM to fall ill again and refuse to ring the GP until it's really too late for home treatment to be effective. And here we go again.

DF is in hospital for minor surgery this week. I'm working full time in healthcare myself, 2 teen DC and live 3hrs away. Currently sitting with the guilt of not rushing down to support with the latest hospital admission as she's safe and being cared for there, on the basis that I'll likely need to go in with boots on the ground when she inevitably says she's fine to go home as family will come and stay (no, we can't) and they try yet another unsafe discharge.

And breathe...can I claim my spot in the Bad Daughters/Granddaughters Club?!

Having to deal with elderly relatives when you arent young yourself takes its toll.

I can see that with DB. These last months have aged DB. Because DM has been in hospital and then CH it hasnt been physical but emotional. He is seeing his much loved DM disappear before his eyes. He has fought against it, denied the evidence but now there is no denying it.

The policy makers, the commenters, dont see this bit. I also find The Altzheimers Society irritating. My DM gets angry because of 'unmet needs'. Unfortunately that 'need' is to not be 86, doubly incontinent, unable to see, unable to recognise, unable to understand.

A couple of sing songs and a flick through a photo album arent going to sort that.

Welcome @CrazyGoatLady and also @ThisIsIrrelevant to the board no one wants to be on !

Reflecting on the timing for me.

The worst started as I was in deep menopause. Lots of downsides but with it suddenly the ability to see the truth as it is, not care so much about what other people feel and being more direct. However now due to DPs mental decline I am required to minimise my efforts, distort reality and remould myself into a smaller, kinder and accommodating version of my actual self - when I have just literally learned what that is.

Also when dealing with professionals it reminds me a lot of how it was when DS was a baby and I became Mum - a walking vessel to satisfy his needs. Exactly the same with DPs on hospital visits- I am required to go with them, speak for them, it’s me they tell the advice to even though I am only there once a week so can’t really make sure they do whatever exercises or eat certain things and it’s pointless telling the carers as they change all the time.

I was content for the erosion of self with DS - I knew that it was necessary to protect my baby - but with DPs I am fighting it every inch of the way because there are alternatives and I’m not putting in the effort to develop a strong and happy DC, the inevitable conclusion is the same no matter what I do.

I echo everything you have said @rookiemere.

I had just started to recover from my chronic illness and get back to having some time and energy for myself when DAunt went downhill, was also struggling with menopausal symptoms throughout with no treatment, then DF got worse.

Then the unreasonable expectations of HCP's that I will somehow be there all the time and re-organise my life around DF's needs (the SW also made similar noises about DAunt when I was trying to safeguard her and get SC help despite being told no repeatedly).

DF won't do any exercises anyway mostly because he doesn't want to do anything new and especially without coaching and the carers won't do that with him as he says no to them for basic things like just having a wash in his new bathroom.

I am also not prepared to erode my health, wellbeing and time I could spend raising my children who still need me. DF was an emotionally unavailable functional alcoholic through my whole childhood until last year when he stopped drinking for his own health, he hasn't made the effort to visit us, his grandkids or see his friends over the years so now he is lonely, but it is not my responsibility.

Snap, to all the above. I have 2 chronic health issues, have a teenager with severe IBD and support 2 others with ADHD. Hospital visits and dealing with the HSE are my speciality these days. Im in Ireland.
There is no amount of care in the world which will make my DM deal better with Parkinsons. As above she just doesn't want any of this, and who can blame her.
Today I got 3 irate calls. 1 from my aunt about the state of DM house, 1 from the carer to complain about DM behaviour and the last from her care manager. Care manager went away to talk to others and came back with the news my DM was diagnosed with mild cognitive decline 18 months ago. But of course didn't tell anyone. Shes pushing for an urgent reassessment now and her care needs will have to be reviewed. Again.
I have just had a cry at my DC nurse who's been lovely and made me tea. And at least irate Aunt is cleaning, so small blessings.