Cockroach cafe 🪳 Spring 2022 🪳

@Onewildandpreciouslife One thing I was told is that when people with dementia say they want to go “home”, they want go back to a place (and time) they felt safe.

That is such a comforting thing to know. My mum constantly wants to go home. She has hated the home since the day she arrived and says she wants to go home and be "surrounded by her family". She wants to go back in time to when my kids were young and she was the centre of their world. They are all adults and live with their spouses all over the country. She wants to turn the clock back 10 years before any of them left home. It really helps to know that this is a common feature.

@OnthePiste I’m so sorry - it’s heartbreaking. One thing I was told is that when people with dementia say they want to go “home”, they want go back to a place (and time) they felt safe.

It’s very tough, because really they want to go back in time, and no one can give them that.

@OnthePiste It's early days, mum was about a month before she stopped mentioning home, another couple of months before I was less interesting than whatever was happening in the lounge.

MIL can't go home because the home she's thinking of has her mother living across the road, the image she has in her head of home hasn't existed for over forty years.

I do feel for you x

Thanks @ChiswickFlo and @NefretForth.

She's only been in there since Wednesday after being discharged there from hospital for 6 weeks respite care. She really hasn't been coping well at home and can't bear being on her own between carers. I hope she will settle down more in the next few weeks and then we can decide if it is to be permanent-at the moment I can't see how it can't be. Just waiting for a negative Covid test so I can go and visit, hopefully only another day or 2.

I lurk on here but don’t post much - feeling a bit sorry for myself because MIL clearly needs to move to a care home, but won’t countenance it. She’s virtually blind, virtually deaf and has limited mobility since breaking her hip last year. The care company DH and BIL use is very good, but can’t provide more care as they can’t get the people, so she’s managing with carers coming in 3 times a day. I can see that there’ll be a crisis and we’ll have to find something in a hurry. And she is really tough so likely to go on for years. By the time she goes my DM will be in a bad way - her memory is going already. The rest of DD’s childhood is going to be spent waiting for the next crisis with elderly relatives. And that’s absolutely nothing compared with what many people on this thread are dealing with.

I’m so sorry, @OnthePiste. We went through it with my grandmother and it was hell.

Spoke to mum on the phone today in the CH. She's so confused, she doesn't know where she is and is asking for her mum and dad. It's heartbreaking. Just keeps asking when she can go home (wherever she thinks that is). Dementia really is the cruellest disease.

Mums been for dinner.
She ate quite a lot!
We sat outside for a while too.
Enjoy the wine 🍷 @countrygirl99

So many typos, can you tell I hit the wine as soon as I got home?

VisitEd mum this afternoonand got told she is sooo busy with all her activities! Except she told me she had started going to a lunch club and a minibus takes her and it's really nice and friendly soI asked eat dhe had to eat and she told me it starts next week. Then we had similar about outdoor bowls club.🤷‍♀️
And she was moaning about looking after her massive (not) garden but dismissing suggestions of getting someone in. Told me it's alright for me as my garden is so much smaller when in fact it's nearly 4 times the size of her really quite small and half patio garden. Honestly, if it takes more than 10 minutes tomorrow mum's lawn it's because you've got distracted and done something else in the middle. It's a nice garden for an older person. Lovely large sun trap patio, low maintenance shrubs and a tiny lawn, enough for seasonal flowers but not too much maintenance but the way she goes on you'd think it was at least an acre of flower beds to RHS display standards.

I apologise if I’m missing stories out or failed to see updates, I’ve caught up on the last few pages. I’ve just finished a tiring work project and also the teaching term so haven’t been up to date with anything in the rest of the world.

ChiswickFlo your comment about money and rich elderly struck me: I’m really aware that my DM has had options for care because she was immediately able (well, I was able, using her funds) to pay for a nice room in a nice care home with no need to apply for any benefit or assessment, no gatekeepers. It’s a different world and thoughts of the alternatives scare me. I hope the trip goes well, the last long trip I had with DM, just before all her current woes, was with an experienced travel company who cater for oldies, I think they took the strain out of things in re driving and suitable hotel acommodation and they also had mobility aids, got the coach right up to the door of attractions etc.

Nota I’m sorry visiting your DM in her care home is hard for you. The way I see it, the idea of care homes and the very best efforts and good standards etc. are always undercut by the core reality that people go there when they have to, not when they want to. I know I will never have visits that aren’t haunted by all kinds of resentments, worries, how-did-we-get-here’s and brave faces.

Happy Easter thesandwich and all Cockroachers.

Knota I feel a very deep resistance to learning about incontinence products and yet it seems I have to because although DM asks me to supply them, the care home says she isn’t assessed as needing them. I have bought her loads of different Tena types, some of which came from her house that care agency there had got for her. Before the care agency, I found she’d been using some of my old night-time period pads (found out when I came to chuck them, having gone through menopause at 55) but I’ve never found out the details of how incontinent and what type and never saw any evidence but she told me she’d had a couple of ‘accidents’. Now she has a glorious selection and keeps asking for different ones, they’re never quite right although she seems to use them up: it feels like another game but she’s also confused and loops on various topics. I confess I am reluctant to take her out on my own (she’s done a couple of hours at a time before, when I have help, garden centre tea shops) because of this. I am going to need the equivalent of a nappy bag I think. Aargh. I suppose I have to have A Talk with the care home to clarify, they are always so breezy and busy I don’t feel I get proper answers unless I have A Talk. I am probably That Relative.

I hope your DM takes to U3A Minty, my DM got a lot out of them, and their trips, and the clubs.

I agree countrygirl that the whole entertain me thing is exhausting, and, perhaps because I don’t have children, I am staggered by the assumptions made that children’s jobs are to compensate for this inability to be on their own, or make independent friends, or join things while still able. My DM would have assumed the same after DF’s death but had to do some of it herself due to my ahem neglect. Things sound really hard with your FIL

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Oh @countrygirl99 that's so tough for you all.

A friend of mine had a similar situation...dad diagnosed with lung cancer, mum already had early stage dementia.

Thankfully they were on board with moving into a home...they settled really will and the reduction of stress on her dad gave him an extra year. AFAIK her mum is doing okay since he passed.

Well I have now done both lawns and power washed the drive...going to park my arse for a well deserved coffee whether she likes it or not.

I mean...its not gonna be his choice much longer, is it? 😞

[quote countrygirl99]@ChiswickFlo he has recentlybeen told his prostate cancer has spread and his body won't stand chemo due to his multitude of other conditions so he's panicking. He can't take morphine for pain and is racking up side effects to alternatives as well. He is also the main carer for severely disabled MIL who regularly wakes screaming. All in all thing would be a lot better if MIL was in a home but he won't even discuss it. DH is taking him to an oncology appointment next week when we will find out more, then he will phone SS and make sure that they are aware that he is convinced that 24 hour home care for MIL will appearas soon as he can no longer cope. There is no bedroom for an overnight carer, SS have told him it won't happen, but he won't hear what he doesn't want to hear. He hasn't told MIL he has cancer in the 3 years since diagnosis. It's going to be a total shit show.[/quote]
Oh fuck ☹️

@ChiswickFlo he has recentlybeen told his prostate cancer has spread and his body won't stand chemo due to his multitude of other conditions so he's panicking. He can't take morphine for pain and is racking up side effects to alternatives as well. He is also the main carer for severely disabled MIL who regularly wakes screaming. All in all thing would be a lot better if MIL was in a home but he won't even discuss it. DH is taking him to an oncology appointment next week when we will find out more, then he will phone SS and make sure that they are aware that he is convinced that 24 hour home care for MIL will appearas soon as he can no longer cope. There is no bedroom for an overnight carer, SS have told him it won't happen, but he won't hear what he doesn't want to hear. He hasn't told MIL he has cancer in the 3 years since diagnosis. It's going to be a total shit show.

[quote countrygirl99]@VeryMuchFlaggingMinty at least I don't have an L to deal with.
We've had a difficult week with FIL as well - 2 paramedic visits, 3 GP home visits, 1 call from the fall alarm people and a phone call from an occupational therapist standing on his doorstep wanting the code for the keybox. But there's no point him phoning 111/999/GP as you can't get anyone to come. Well, I'm sure nobody else can as they are all round his house![/quote]
Sounds like him being at home is becoming untenable??

[quote IthinkIsawahairbrushbackthere]@ChiswickFlo I'm ten years older than you and part of the reason for starting my OU degree two years ago was that it was something that my mum would respect and therefore give me time to do. So I knew that I would have an hour or two every day when she would not call me. Find something that really interests you and go for it. I have enjoyed my current module so much. I have two essays to do in the next five weeks and I am finished for the year. I have loved every minute so far. Go for it.[/quote]
Thank you. I'm thinking of doing art history

@VeryMuchFlaggingMinty at least I don't have an L to deal with.
We've had a difficult week with FIL as well - 2 paramedic visits, 3 GP home visits, 1 call from the fall alarm people and a phone call from an occupational therapist standing on his doorstep wanting the code for the keybox. But there's no point him phoning 111/999/GP as you can't get anyone to come. Well, I'm sure nobody else can as they are all round his house!

Oh dear God...she's just had a massive toddler tantrum because I suggested I mow the lawn tomorrow afternoon instead of this morning.

Seriously a good half hour of stropping and abuse because I said the lawn was damp and would be better cut tomorrow afternoon.

I have now mowed the lawn.

Welcome @HerkyBaby glad the thread helps but sorry it's needed.

@countrygirl99 I am increasingly convinced our mums are related. The contant moaning about how lonely and abandoned she is drives me up the wall!

We've had a mildly trying stay...lots of spurious musings about the neighbour's activities...

...A knock on my bedroom door this morning to announce that she was 'going to sit on the toilet'

The latest theories about L and his family...last night, following a last minute volte face about having a curry in dad's memory last night.

The usual turbo whinge about DD and I being on our phones (I was reading the news whilst about 2 mouthfuls into my first cup of coffee this morning)

And a list of chores...

@ChiswickFlo I am in awe of your insanity fortitude and optimism!

[quote Knotaknitter]@countrygirl99 Mum's story was that she was all alone, she never went anywhere or saw anyone or spoke to a soul all week. For her, that was how she lived.

She spoke to me twenty times a day on the phone and I was there for three hours a day, every day. When we were allowed we went to the shops, garden centres, the library, out for coffee but because she couldn't remember having done it, it had never happened.[/quote]
That's pretty much like my mum's story. I honestly think even if I was with her 23 hours a day, she would only remember the one hour that she was on her own. With dementia, it is never enough. She is currently in respite care and I have to say I am enjoying the silence!

Happy Easter all