The Cockroach Cafe 🪳 Spring 2023

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in daffodils from the garden to remind us all that spring is around the corner and better times on the way.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So 🪳 mes amis/amies, and may you all live to fight another day.

I am not surprised to hear similar stories and friends going through similar. Those with money choose a care home and have a better final few years I feel. I emailed my worries to rehab team/ SS earlier in the week and my husband got a voicemail today saying just to say we are going to reassess your aunt tomorrow. He left one back, ‘she is my mother and I need to be there’ 🤞 luckily wfh . The idea that they would get a sensible conversation from her shows how little they know. She told me a man came to the flat, stripped her naked and left her lying there with no duvet and this is why she was screaming for help. Anyway they rang back and said but do you have PoA on health and he said no but you won’t know whether she is making things up or not, she can sound quite convincing which is how she came to be home in the first place! What is frustrating for dh is four different OTs, 2 or more district nurses, no more input from GP, every time a different case worker at SS. None know his mum, all are guessing based on one visit or less!! No one asks the Carers or the person who sees her most…. I did send them a photo of thrown away food and my table of sell by dates etc and one of the soiled washing 😁. Second sheet soaked and washed at 60 now in our dryer. But I am not doing anymore, I really don’t understand why 2 Carers 20 mins each at tiny flat can’t turn on the washing machine ? Not their job I believe. Paramedic advised me to install a camera for safety and to watch mil in the evening, apparently plenty do. We aren’t keen on that and suspect carers have right to object too. 🤔

@Juneday even with the best intentioned and organised medical and care, I’ve found that someone needs to be a constant advocate, and I think that’s why we’re all so bloody knackered; always on the phone and following up and filling in forms etc etc. Are your mil’s carers for personal care? It depends on the agreement with them, some contracts don’t include laundry as personal care and you need a separate agreement for cleaning/housekeeping tasks.

that’s what my mums carers told me anyways, strictly speaking they are there to help her wash and toilet and to make sure she eats and drinks and takes her medication. Thankfully she does have a roster of regular carers, some of whom will stay their full allotted minutes and use them to do tasks like bunging on the washing machine or emptying the kitchen bin. One told me she tries to treat her clients like she’d want her gran to be treated and she was disdainful of some of her “knock, pills and go” colleagues. But I couldn’t do her job for the world, some days she’s doing all four visits a day and as soon as she’s finished the breakfast rounds she’s straight in to the lunch rounds etc.

as for dealing with the code browns, that’s something I never thought I’d have to do for her, and I try to cultivate a bad memory on the details of that aspect, along with trying to sort out her toenails as half of them are so rotten with fungus they fell off last year. DB and I have a line in very black humour flavour mutual support to keep us going. Thank goodness WhatsApp messages are encrypted!

Sacking the carers is a familiar story. We had it every time dad wad discharged. Mum would be insistent that she could care for dad and would go on at him until he sacked him. The final straw was when DB went round and dad had was really ill. Turned out he'd overdosed on oramortp. Hospital admission for a morphine overdose was hard to ignore and dad told mum he wasn't allowed to sack the carers or he'd have to.go in a home. Didn't stop her complaining to us mind.

I couldn’t do their job either and the first time she had care, before second fall, she had the same 2 Carers one was working 9 hours - she was kind and smiley and has been back in touch to visit in her free time, but a different agency was picked and they clearly have staffing issues because every week there is at least one change of carer. I know they are poorly paid and I tell them to tell us what we can do to help make the job easier BUT unless they turn up together and are Sara Steady trained, they are not bothering with the commode. MIL was screaming out ‘I need a wee’ to one new young career whilst I was sorting the washing and the carer looked to me and said what do I do? Her colleague had left …. I know someone whose son was a cared for adults with autism on severe end who need specialist home care - all
fully funded - he was on just over minimum wage - the owner of that business is paying herself £500,000 a year and is currently looking to sell this fabulous profitable business for millions - our taxes pay for her to be wealthy and the Carers remain on low wages. So I get why some Carers feel undervalued - but as with all jobs, some are better than others and some are suffering because of poor management and no fault of their own.

Oh, I got through in 20mins! Rather pleased, as I rang 10mins before phone lines closed, thought I’d be cut off. Woman who answered was very efficient and helpful.

i am hoping visit today is reassessment which will include financial - happy for MiL to pay according to formula, she is below threshold to self fund, but will make a contribution. So I hope that includes a package for light cleaning. DH is planning to be present, but wasn’t invited! Not sure whether we want MiL acting more coherent or the screaming of yesterday,.. SW needs to see both sides - if she saw her on her own acting the way she was yesterday at my visit a conversation about care would be pointless ! Other than she will still say ‘no’ to care home. 🤔.

SW may get the made up stories and believe them, or the obvious made up stories about chickens in the kitchen - in which case does MiL have capacity / capacity is very broad from our limited experience to date.

I’m sorry @Juneday , it really does seem from everything you’ve said that your mil’s needs are such that they can’t be met safely at home. The usual wisdom on here is that you need to step back and let a crisis happen in order for changes to happen, but it’s hard to do that. Fingers crossed for the assessment today.

Mine hasn’t remembered mine for years. Since I would have to buy the present, buy the cad, and sign it, it seems easier not-to raise the subject.

Have PoA on finance not Health so no doctor or SS can officially talk to me. If she has the capacity, she can sign a letter to her doctor saying “please talk to @Juneday and share medical notes with her”. Remember capacity is ona decision by decision basis.

@Knotaknitter She’s safe, and will live a lot longer. It’s not what I’d want for myself

I do agree funnelfan, and other than suggested questions for DH to ask SW today, I am walking away - albeit she would not have been diagnosed in December if I hadn’t forced the issue. I did worry that family will accuse me of being wicked step daughter if I failed to act as her carer - despite the fact that one son hadn’t visited for 4 years…. And only did (before accident and severe worsening of dementia) after I messaged his daughter (middle aged not a child!) via FB and pleaded with DH to message him too. He was shocked when he saw her before the fall and after started to visit much more, he Is due to see her this weekend first time in 4 weeks - will be interesting to hear his views, but he won’t come to us and chat - even though we are 10 mins away! Families🤔🙁

DH’s other DB is supportive and his DW very much so having been through this years ago with her father.

4 months MiL ago she would have chatted happily…. , although was quiet and didn’t want to stay long on Xmas Day, she ate and walked with stick etc. Two falls, 10 weeks between 3 hospitals - shocking decline on all fronts and cough that isn’t shifting that she caught in first hospital.

It's not necessarily that the stories are made up, for the person telling them they really happened. They have that memory of it happening, just not the time stamp as to when it happened. Mum would have sworn on a stack of bibles that she'd had a shower that morning, the same as every morning but the layer of dust in the bath said otherwise.

Sometimes memories are confused with dreams - I worked out that the key question to ask when I got a strange phone call in the afternoon about lost children or the dog going missing was to ask if mum had just woken up. That might be where the chickens in the kitchen came from. The most persuasive but odd stories all surfaced after mum had woken from a nap. The one about my aunt visiting was so on the mark that I really did think she'd been in the house until the comment about her being a blonde bombshell. The sister that had visited mum was in her forties when she should have been in her eighties. The indignation and the shock was real, mum felt that she'd been confronted with the long estranged sister because she had the memory of it but the visit had taken place forty years ago.

Mum is absolutely convinced she manages her own finances. All she actually does is file her bank statements. She's completely unaware that she is paying for her fare visits even though the bank transfer made by DB is on those statements. And she thinks the mobility scooter insurance is in dad's name and she needs to get round to transferring it even though DB did that straight after dad died January 2022 and it's been renewed since.
She tells you stuff that you know is untrue but has elements that are correct. E.g. First covid jab - she is convinced she didn't have an appointment. That DB heard where they were doing them and just took them. What actually happened is GP phoned with appointments (they were in the 1st priority group) for both of them. Mum wrote down the wrong day and forgot it was for dad as well. Dad phoned GP who gave him the correct information and DB took them and they walked straight in. So basically she knew they had them, the place and who took them but all the arranging had been forgotten so didn't happen and mum was astonished people weren't queuing round the block.
We get a lot of that massive oversimplification of what happened and how.

I have tinnitus, and sometimes if I relax into it I can hear it as an orchestra. I think that might explain how my father was able to hear the “choir” outside his house.

I know I have tinnitus, I know what’s going on. But my DF, who lives alone and does not admit to being deaf, has neither an understandable mechanism for the noise, nor someone to bring him back to earth.

Is missing children a common theme? MIL sometimes has days filled with lost children, becomes quite distressed about them, and it can be a day or two before she lets go of that particular anxiety. In the earlier days of her dementia she worried about her 'missing' small grandchildren, who were sitting in front of her, but long past the toddler stage.
I still can't figure out how to join her in her own world when her own version of reality is nothing but a torment to her. She's not convinced by unsubstantiated reassurances. She needs to see those mythical kiddies in front of her.
And that's a good day.

We often get confused stories from Mum. The classic one she often tells is the time she was in the Christchurch earthquake. She’s mixing up a visit to NZ with what she saw on the news but is insistent.
She also insists she’s met my daughter’s ex partner’s mother outside a church in Surrey(neither live anywhere near Surrey). She can describe the whole event down to what everyone was wearing and who was there. They never met. I began to wonder if there was some truth in it and doubt myself after the tenth repetition. I expect she’s thinking of someone else.

I’ve now managed to set up internet banking on all her accounts so for now I’ve avoided needing to take the LPA forms in to Santander.

I finally got a POA debit card for mums account
Took 4 months, mind
First direct were rubbish
She seems to get a bit confused during conversations now
And definitely struggling with word finding
The card is already useful
If out, mym asks me to pay with her card even if she's there - getting her purse out etc seems to have become harder for her
I'm - yet again - being referred on the 2ww by my gp
Utterly fed up

When the SW visited mum in the care home regarding DOL’s, she told her the staff were dealing in stolen children in the cellar. They were making hundreds of £’s on the black market selling children 🤷🏼‍♀️

My mum often asks if she has any more daughters, or when at home mentioned frequently the other people living in the house. She would often talk about singing that she could hear but no one else could. Last time i saw her she remembered how old my children are, but said suddenly "there was an explosion over the river last night" (the blitz, obviously).

So her GP of 50 years is saying they can't sign the notification form for my deputyship application and I have to get care home GP to do it (in the time that they had sent 4 emails and made a phone call they could have signed the effing thing). I am irritated by this - I'm struggling to find three people as it is and it just seems like ridiculous jobs worth nonsense to me (maybe I'm wrong?)

Shocking how long PoA can take, Barclays came through but the endless letter, PIN numbers, PINSentry, membership numbers, phone passwords…. Then doesn’t like my browser. Eventually got a human on the phone who was really helpful, also OT rang me!! Said MiL gave her permission, fantastic help and clearly spent time with MiL and dimmed her up, she had hallucinations whilst there, changed her mind several times about lights on or off, all her usual - OT is speaking to care agency about them not using Sara Stready and commode. 👍. SW met DH and also concluded MiL is too confused to know what she wants, one minute yes a care home, next no to care home. Conclusion, thinks Care Home is likely best will look into a trial period in the hope that it works. 🤞. Meds have run out now, but incontinence products finally arrived. MiL calm today but she did see a horse in the flat. An improvement on scary men though. Phew.

B Gas wanted photo of PoA forms so that we can sort bills and readings etc. It is all very slow on paperwork front meaning we are paying for some costs and paying back now / I have a spreadsheet! Will help now that we have financial assessment to do.

I do feel PoA should be a bigger priority for banks, luckily we could afford to wait to be paid back, but in total were owed near £500 - that is a big ask just because Barclays had a 7 week wait for verification appointment🤔

DM has been with me for 10 days and travelled back today with National Express. The coach was very late (which caused me to have problems with the police) and she would have had a very rushed connection. She made it to her destination but left her bag in the coach. Then she went to a newsagents and left her other bag there. My niece and brother were then calling me to sort it out. I did, however, have a win with DWP 🙌🏻

I wonder if I should scan the POA?
In case I need to send it elsewhere?
It was done before 2019 so not an online one

DM has been with me for the last 10 days and travelled home yesterday with National Express. She managed to leave the coach without her luggage and then leave her bag in the newsagents. Thankfully she still has her handbag. She is meant to be going in a coach holiday on her own a week on Monday and is really looking forward. WWYD?!!!!!

You need an authorised copy. Solicitor or Financial Adviser can do it for you. So can the donor if they’re up to it - there’s a stamp you can buy with the form of words and it has to be stamped and signed on every page.

I do feel PoA should be a bigger priority for banks, luckily we could afford to wait to be paid back, but in total were owed near £500 - that is a big ask just because Barclays had a 7 week wait for verification appointment Things have gone downhill. I’ve always had either an appointment in a few days, or walk in with no appointment, and on the spot verification. Even Barclays

That's worse than NatWest!