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.

@SchrodingersKitty this is not meant as a personal slur on your DF, but it’s a story on repeat here and I am so tired of these old people whose independence is gained by standing hard on the backs of their adult offspring.

On another note you shouldn’t be doing everything just because you retired. If you were an older only adult DC aka me then fair enough, but the others should definitely do something.

@SchrodingersKitty I agree with everything Raven08 has said. It seems to be a very common problem (and one I am also trying to navigate) that elderly relatives refuse to make changes or accept external help that would make things easier for everyone and reduce the risk of crises, but expect their children to drop everything to facilitate this.

@Greigey Happy Birthday! Try not to be too hard on yourself for having this reaction. My mum also has some 'interesting' long term character traits that make her very hard to deal with and I am finding that actually as she gets older they are becoming worse. I think at some level she was previously at least trying to pretend to be more reasonable but now she has very little filter when she's with me.

I may be wrong but I think we are seeing a generation of people who didnt care for their own elderly relatives and perhaps dont have a script/understanding/experience of how to behave as elderly people themselves.

There isnt that little flicker of 'oh god, I sound like my granny'.

Yes, I agree with this.
My dps parents were all dead by the time they were 31.
My pils parents we all dead by the time they were 38.

@GnomeDePlume my DM doesn’t have that excuse as both my DGPs lived into their 90s looked after at home by Duncle. Her express instructions before rapid decline to put them in a care home as soon as they needed it, didn’t really translate into that request until a lot further down the line when ir became reality . I wish she was her old self sometimes so I could have that conversation with her. I really feel I have sacrificed so much for them and I don’t think that is what she would have intended.

DF is rather different .

Totally agree @GnomeDePlume my parents were living quite the high life at my age (quite literally - they were on holiday in Australia at equivalent birthday).

Never had to take anyone to medical appointments, deal with anyone else’s finances, source plumbers etc etc for poorly maintained show homes that they refused to downsize from yet no downstairs bathroom and so on.

@Raven08 @teaandbigsticks yes you are right and I'm all too well aware of these issues. The problem is that whenever I say 'enough' and step back there is another huge crisis with hospitalisations and even more work and stress for me. I think the problem is that the absolute horror of worrying for and caring for my DH over two and a half years of the ups and downs of cancer then the spread to his brain has sort of primed me to be the one who immediately reacts in a crisis and drops everything. One of my sisters unforgivably said that all my hospital experience with DH made me best able to cope with the repeated hospitalisations of our parents.

And yes, DF put his mum in a home at first sign of alzheimers.

Same here. My mum's parents had emigrated and both died in their 50s. My dad's parents lived a couple of hours away and he didn't have a car. FILs mum died early 60s and his dad washable and hearty until died in an accident a few years later. MILs dad also died in his 60s and her mum was independent until she died of a heart attack. The only "care" was having her round to Sunday lunch and sending DH round to mow her lawn until she moved into a flat.

I don't think I'd feel so bad if mum were remotely grateful for everything I've done/had to give up to manage her life/health.
I didn't go today...it's been a bit of a rubbish day and lots of little things have gone wrong/broken...you know the kind of day. Nothing major, but lots of little irritations needling you.
Ugh.
Roll on tomorrow!

My mothers social contacts is very very very small.

She comes from a large family of siblings who all live within this same country but they don't visit each other from one end of the year to the next. They are on good terms and send each other Xmas cards but that's it. There's no social life.

All my siblings live abroad. If they were within the Europe, a visit home would be manageable but they are further afield and a visit home is usually maybe once every few years. It's different every year.

They don't understand what I am going through.

I hope to make an appointment with a dementia organisation and charity to get some help going forward before I approach a doctor again.

Memory loss is very vague and subtle and she is still aware of someany things. There is just so many odd behaviours.

Like she is usually does laundry washes at 60 degrees and long washes and she's just paranoid about germs or something.

She was doing a small mini wash the other day and she was washing two pairs of gloves. She knew how to adapt and change it and she did a quick wash. I still think it was inappropriate because it was just 4 gloves but she did know to change from the very long hot wash.

There are so many more other things that are odd. She currently has a command hook in the bathroom holding a facecloth but it's location is so odd and not suitable. It's up so so so high you would need stilts to reach it.

We were doing an online grocery shop the other day and I told her, her shampoo and conditioner is on special offer and then she told me she doesn't use that brand any more. But she did a few weeks ago. But I also caught her a few weeks ago decanting her shampoo and conditioner into empty vanish tubs. It made no sense. Those tubs are not labelled. I reckon she doesn't know what happened to her shampoo and conditioner and she forgot what she did with them.

It's just so many odd behaviours. There's definitely something happening with her but no-one is listening to me because they want to see some sort of a crisis point or something that is more definite even though I have years of observations and odd behaviours from her. Like how come she was stealing my pulse size underwear that doesn't fit her. That is just crazy.

Something else to add - she has no other friend groups. She does like to go walking but even that's reducing now and sometimes she might meet a neighbour but it's not every day.

So her daily and social contacts is limited except for me.

To make all of this worse again, I have years of observations. This isn't just one or two odd things over a few weeks. It's years of odd behaviours and stuff that doesn't make sense.

I know I am not qualified to say if she has has dementia but my mind is strongly leaning towards dementia and taking what I observed for a few years into consideration, I would put it in under FTD behavioural variant but I am not qualified to say that either.

However with me thinking this is dementia, I am already learning about dementia in the background and how to respond to situations and things are somewhat smoother. Like I remember I paid for a new washing machine about 18 months ago and when it was set up she said that it's not good to use a washing machine every day and it's good to only use it once at a time and to give it a break in between washes and wash days and only use it once every 2 days.

My eyes rolled at that. If I reasoned with that, she would have become enraged so I just said ok and I didn't own thing anyways. If I was to obey that it would mean that one of use would never be able to do a laundry wash ever. It made no sense and it wasn't in the manual.

Waiting for a doctor to tell me that - 'yes this is dementia and then implementing strategies to cope with incidents, I would like be dead from stress and stroke.

Anyways to make all of this worse I vaguely remember my own grandmother being in a nursing home for a few years before she died. I don't know why. I asked my mother about 2 years ago and she said she was crazy in her old age and need help. She said that she had dementia but it was mild because she never forgot.

This to me is a red flag towards FTD behavioural variant from my own grandmother because FTD is behavioural based and no based on memory loss most of the time. When all dementias progress they all begin mimicing each other.

I have a few concerns over some of her siblings.
One of her sisters has awful comprehension.
One of her brothers laughs inappropriately the last time I saw him.
Another brother was caught for stealing a few years ago and ended up in court where the judge had a fancy word for petty stealing. The word disinhibition comes to mind. How come the two of them can live decades apart and they both end up doing the same behaviour only one person was caught and appeared in court and the papers and the other (my mother) steals underwear that doesn't fit her.

According to Google FTD can be genetic. None of this is being talked about or picked up on in the family. I am anxious to branch into the family and talk about my concerns because it will only be viewed as gossip and if my mother hears back that I suspect dementis she would kill me.

Nodding my head at so many of these responses. Going back to our parents not having to look after their parents this is exactly what happened with mine. My DM moved 200 miles away when her DF was in his 70s and my DFs younger sibling looked after his elderly DM for years until she finally went in a home. I’m determined not to be a burden to my own children.

@GnomeDePlume you are so right about the experience of caring for elders. My DER did look after his own mother and he refers to that experience often. He is usually very grateful for everything I do, and also appreciates the impact on my own family. He told me I should not have another elderly relative live with us because his mother lived with his sister for a while and he said it was really hard for the sister and her family.
Likewise, everyone who cares for an elderly person closely has insight into the way cognition declines. It's unspeakably awful so we can't speak of it.

@GnomeDePlume I think you are right in DGM's case too. Her parents and PIL were all dead before she turned 50. DGF's parents were back in Ireland, so they rarely saw them. My great granny lived the longest, into her 80s. Lived with DGM's unmarried brother and widowed sister for the last 5 years, a dirty great oxygen tank in the living room and all of them smoking like chimneys 😬She sounded like Marge Simpson's long lost Irish sister.

DGM had a long and freedom filled retirement as DGF, who was a tricky character (likely autistic) died young. Until just before Covid she was incredibly independent, until her late 80s. Volunteering, church stuff, travel, had lots of friends she went out to lunch with. DF, on the other hand, retired early due to ill health, was still raising teenage children in his early 60s and has spent his early 70s as his own health declines dealing with DGM. I wouldn't be surprised if she outlives him to be honest. It does make me sad that I have next to no relationship with DF outside of being useful to him to assist with caring for the people in his life whose needs and wants outrank mine! He's not interested in me beyond that, and has never prioritised a relationship with my DC either.

Probs should get some therapy when they've all carked it, aye!

Strangely, my DM has turned into the MIL she at best disliked and at worst despised. I have pointed this out to her and she does at least acknowledge it.

@SchrodingersKitty Jesus. Welcome. I get it, their health is so unpredictable and you don't, despite everything, really want to be up a mountain somewhere so the elderly relative has to face some crisis (of their own making or not) scared and alone.

@Greigey belated happy birthday.
I have been exchanging more texts than maybe I would prefer with my ER, because she has a leg ulcer which ain't healing, and in desperation I have bought her protein drinks and cleared furniture so she has a little loop she can Zimmer round for exercise. I pointed out that I was surprised to have to nag her to drink the darn things and do the walks, because it wasn't me who had been put on blooming morphine to have a leg dressed! I have been reasonably successful at not actually shouting but terseness and open sarcasm, definitely.

My mum and dad moved away from their parents when they were 21 as my dad joined the forces. They barely visited after that, let alone offered any sort of care, so my mum has no concept of what it's like to run round after an elderly parent, particularly one that gets stroppy if you don't anticipate their every need, and carry it out immediately.

@CrazyGoatLady
Your post made me smile somewhat ruefully ☺️
I can relate.
When younger, I was used as childcare for my siblings, as a teenager, for sending out to work and bring money in, as an adult for sorting out all their (mostly) self inflicted problems.
Mum has never shown any interest in my life, nor in my children.
My brothers dd is worshipped, much like he is.
It's quite sad, really.
It would have been nice to have a mum who actually liked me.

My parents lived a mile up the road from my maternal grandparents. Mum was an only child and DGF died just before I was born and DGM was about the age I am now (late 50s). DGM pulled the widow card, despite being in rude health, and DM did all DGM’s shopping, cleaning and laundry. Dad had to use the car to get to work so Mum walked miles pushing me in my pram. As DGM aged and mum did more and more, she complained that DGM didn’t know what it was like looking after an elderly parent as her own mother went into a home, and as DGM was the youngest of many siblings they each had a day they visited once a week, and that was it.

So mum knew exactly what it’s like to be in this position, and in hindsight suffered burn out herself and yet did no active planning/ downsizing etc for her own old age. It was all vague hand-wavy “I’ve got lovely neighbours and it will all work out somehow”. Aka Funnel will sort it. It’s that aspect that I find hardest to come to terms with to be honest. I think mum never expected to have a long slow decline to old age and extreme frailty, but expected a major medical event would take her out, like a stroke.

@funnelfan
Yes, I think my mum thought that, too, and to be fair, she has got SO much wrong with her that it wasn't an unreasonable assumption on her part.
She retired through ill health at 57 (which is only 3 years older than I am now) and basically sat and smoked and didnt do much else 🤷‍♀️
By 67 she'd been dx with peripheral vascular disease and had a big op - which then failed.
She has blood clots, cardiomyopathy, copd, unstable angina, severe diverticulitis and TIAs.
I'm sure I'm forgetting some other stuff...
Her sisters all lived to late 80s/90s with similar issues, which terrifies me 😕

Gawd I am so nervous about DPs going into the home today. DH is up to get them on the handicab down here and I am due to greet them on arrival. The care home is nice enough but had pop music blasting out at reception so we have already asked them to switch it off when they arrive, and I will ask again when I arrive. They wanted or I think DF wanted the beds to be in together but they can’t do that, so I have asked DH to tell DF as soon as he arrives in the hospital to pick him up and couch it as being better for their sleep and them being on the corridor just opposite each other.
Sorry I am blethering and changing the topic of conversation, I am just really hoping they like it or at least not hate it and I can get a large part of my actual life back.

Thinking about it although DMs DPs lived to be in their 90s and stayed at home she did very little. She went up once a month ( an hours drive - same as either DH or I are doing at least twice a week now - the irony doesn’t escape me) and cleaned for a day, bringing me with her. She moved over to mainland UK to be in same country as me before they became ultra aged. One of my uncles had always lived with him and shamefully now I think about it, he was left to do all of their care. They are country people so going away isn’t a thing, but I don’t think any of the other siblings ever offered him the opportunity to take a break or have a night away, certainly not my DM who did nothing once she moved over here. DM certainly didn’t mean me to do so much caring I think, but her unwillingness to leave DF on his own and both of their lack of planning for extreme old age forced me into that position. I hope the care home means I have some time back as their actual DD and can get over the massive resentment I currently feel.

@rookiemere I really hope the move to the care home goes well and understand your nervousness. As you say, it should give you a chance to go back to being a daughter and not a hands on carer.

Interesting to read about others' experiences of how much elderly care our parents provided themselves. My DM will proudly tell anyone who will listen that 'In our family, we look after each other. It's not hard when everyone who can pitches in' and that she would never have let any of her relatives be 'shoved in a home'. In reality, all her working life she lived a long way from any elderly relatives and her only contribution to care for her parents was to look after my Grandad for 2 weeks a year whilst my uncle and his family (who he lived with for the last 10 years) went on holiday. During those 2 weeks everything revolved around Grandad- she took time off work to stay with him all the time and all the usual routines etc changed to fit what he wanted. DM was very pleased that he told her he loved being there and wished she could look after him all the time (secure in the knowledge that he had a settled home and no actual desire to move away from the area he'd spent his whole life in). I think this is what she expects for her own care. DM's mum died very young and Dad had very little contact with his own parents so absolutely no involvement in their care. My parents did help an elderly aunt but that was purely doing her shopping once a week and occasionally taking her out for a day trip- she was incredibly fit and independent right until the last couple of weeks of her life, plus she organised her own cleaner/gardener/laundry service when she started to found those tasks a bit tricky. There was never any real suggestion that DM would take on what she is expecting of us.

DM and Brother have always been critical (to be polite) of my MIL because FIL spent his final years in a home. Both feel that if MIL and DH had been less 'selfish' they would have looked after him themselves. FIL had very complex needs and had helped care for a parent with a similar condition. When he had mental capacity he was very vocal about his wishes and having professional care was part of that. I have no doubt that he was more comfortable in residential care than would have been possible at home, and time spent with MIL and DH was far more pleasurable because they were not burned out from trying to do the impossible. I have made sure that my own (young adult) DC know that I don't want them to be my carers- I know how emotive the idea of a care home and want my DC to know that they have my blessing if they feel it's best for me when I am older.

I don’t know why people get castigated for “dumping “ their elderly relatives in a home. In my case the most self interested thing I could do is let the Scottish council continue to pay for the maximum level of care visits which still doesn’t meet their needs and watch them continue to gradually decline in their increasingly unsuitable house.

The care home costs a fortune and yes I would be lying if I said I wasn’t slightly disappointed that the inheritance that we had hoped to pass on to DS will be eroded so quickly, but that’s nothing compared to the relief that they will be in a safe, appropriate environment where they will be fed and looked after and is close to us so we can visit as the loving relatives I would like us to revert to being. Oh and earn some money for our own old age and enjoy foreign trips whilst we are still able to.

@rookiemere

9/10 they have a rose tinted view about moving parent/granny into a garden annex. The DP/DGP will slot in, teach DCs to knit/bake cakes etc but wont impose. At the end of life there will be a touching deathbed scene with everyone gathered round reminiscing.

Reality, as we know, isnt like that.