🪳 Cockroach Cafe 🪳 Autumn 2023

[MereDintofPandiculation]

I’ve just done the autumn deepclean, brought in a load of logs, and made sure we have plenty of rugs and throws, and toasting forks and marshmallows. I’ve even brought in extra rugs from the Good Daughters’ room under the stairs - they’re not needed there, no-one ever uses it.

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.

The problem is that my Dad is totally meek and mild and will do anything for a quiet life, where my mum is a harridan who will use every trick of manipulation in the book to get her own way (nothing to do with her diagnosis - always been like that!)
You just described my parents. My dad did argue back until about the late 80s and was planning to divorce. Even went to see a solicitor, but decided to give in and give up instead.

Drifting towards the end here... all would potentially be quite peaceful except that we siblings are now rowing about funeral arrangements. Absolute nightmare. My own fault for bringing it up as I was afraid that if we waited until DM was gone we would be stressed and argue. Ho ho.

@PermanentTemporary Sending strength on all fronts. The sibling dispute - DBro was virtually booking funeral while DF was in coma. Not easy.

@PermanentTemporary please don’t blame yourself. That storm was coming however it arrived. Sending strength and gin.

Oh I'm keen on booking the funeral early. But this is the second big sibling row of 2024 already, it's too much!

Thank you for thoughts and strength x

@PermanentTemporary sorry to hear. Bringing up funeral sounded sensible to me. as you say might save upset later.

When my mother & one of her sisters J in their 80s, had to organise the funeral for eldest sister - it wasn’t easy to get a date for various reasons. They finally got a date that worked. Problem was in the stress of it all they forgot it was the date of their other sisters birthday. !

I am assuming some of you will have experience of the various medication given to elderly with dementia and anxiety maybe. We don’t have PoA on health but nursing home does inform us of changes. MiL seems to be on diazepam, antibiotics, BP drug, and now another medication supposedly related to dementia. Any ideas what that could be and experiences of whether it helps? DH only said he thought it began with R. He is usually pretty good, but he had another upsetting visit ….

Might it be Resperidone? I've no direct experience with that but have heard that it can cause mobility-type issues or constipation. I'm so sorry the visit was distressing.

Sending love and solidarity to all Cockroachers. I don't really post here but am a long-time lurker; it's such a helpful and kind place for all in the most grim of situations. x

Rivastigamine? DM was prescribed it and it made her cognitive abilities worse, so after a week or so I asked for her to come off it. Consultant is still keen for her to be on an alternative one but I’m holding out. They’re supposed to reduce auditory and visual hallucinations.

DM has been on Donezepil (made her sick), Rivastigamine (patches, she was allergic to them) and is now on Memantine. I can’t say whether it makes a difference.
She had an osteoporosis clinic last week and her vit D was 20 so I wonder if that might be having an impact on both her mobility and cognitive function. She’s on a high dose for the next 6 weeks.

@Juneday I second 'rivastigmine'. It's OK I think. I could not really tell the difference ever in terms of memory and other symptoms of dementia but apparently it was good for mum's mood. She was a bit aggressive when they temporarily took her off it.

Thanks all, I haven’t visited myself for a few weeks as she was in a horrid place, she didn’t know me but thought I was someone else whom she understandably would be very angry about …. I had to leave the room. I think Ravistgamine makes sense, she has had hallucinations, she’s very unpredictable.

Staff manage it so well, I have to hope GP is making right decisions but equally the mind is so complex !

Two 40 something grandchildren visiting her on Sunday and I have explained - one hasn’t seen her for 8 years - I think it will be a shock. I can’t decide if it is a good idea or bad, but they aren’t my family and not my decision.

🤞.

Welcome, @REP22!

Sorry me again, in need of a double espresso. Didn’t sleep well last night after DH went to find MiL in A&E, nursing home sent her in because she was refusing food & meds (for new chest infection) as well as usual shouting and confusion. DH home and an hour later Dr rings and data MiL really unwell, they will start on some IV antiobiotics but thinks she is very frail and may not work - more or less prepare for bad news. DH wfh & gets a chance to dash back to hospital. MiL asleep.

They thought she wasn’t eating simply because of dementia, DH corrected that. MiL on saline drip and IV drip at the moment and sleeping all the time. They now they say she isn’t so bad and want to get her back to the nursing home.

Whilst I am happy that she is well cared for and comfortable at the nursing home, she could just refuse meds again…. And may continue to refuse food again. In the meantime DH feels he has to visit again at hospital when finished working. It is kind of him but likely she will asleep, if awake she barely speaks & she doesn’t recognise him.

4th A&E visit since May, organised by nursing home. Bracing myself for many more months of this.

meanwhile my parents keep asking when we are going to visit them 🙁

Oh @Juneday thats so hard. Would there be any point in agreeing with the nh / gp care priorities? Does dh have lpa? Refusing a and E admission?
sending triple espresso and gin.

Oh gosh Juneday, all those A&E visits can't be good for anyone. I understand that she/family may well want all possible treatment to extend life, but is there not a way of getting that treatment at the Home via say District nurses?
Sorry if I'm completely wrong as different area/situation, but when my mum was struggling a few weeks ago, DNs put her on a kind of 'hospice at home' list and told me that it was not an assumption that she would die soon, more just a way of more gently managing her health. So I think they could for example set up an antibiotic or painkiller drip. Rather than taking her to hospital which is really distressing and where you don't really get 'looked after'.
Just wondered if you could ask about that.

nursing home sent her in because she was refusing food & meds (for new chest infection) @Juneday I’m finding it hard to accept that a nursing home couldn’t manage this themselves with better discussion with her GP and family and that they would think A&e to be a better place for a woman like your MIL. I’m very sorry for all concerned, it sounds like massive arse-covering on the part of the nursing home.

Arse covering does come to mind! The nursing element of care home is one floor with I assume a few qualified nurses and maybe 20 bed rooms. There is a GP who visits, DH has spoken to him twice in 8 months.

The nursing home was organised by SS, I had a quick look at CQC rating, I should read it in more detail I think regards the nursing element.

It maybe the visiting GP advises or nursing home panic when GP isn’t available?

Before MiL was diagnosed and had anxiety and feeling faint and falls, her home GP twice asked her to ring a family member to take her to A&E. DH, son and mostly me, spent hours in A&E. seems to be a default with GPs in this area sadly. After her fall the GP practise sent a GP once and other times always said ring 999. Drives me a bit mad as tests results have been lost and every visit starts with a new set of bloods and review; to add to confusion area has 2 hospitals that paramedics go to and the hospitals can’t access each others records. In 9 months 4 rounds of blood tests, BP, CT scan, 2 chest x-rays, that’s visit after the original fall and two surgeries. Amazing how strong she is really.

I am keeping my distance for now.

That sounds mad @Juneday . I think you're wise to keep your distance!
But perhaps next time things calm down, and before the next crisis, there's a conversation to be had about District NURSES? In my area, the GPs can't actually do things like injections. But instead of A & E, the DNs come out. The other really good thing about this is that the DN team is then keeping an overview. So unlike the to'ing and fro'ing to hospital and no one really knowing the elderly person, their prognosis etc, the DNs can be more holistic in their approach because they can see how often the person is needing which form of treatment or care and it makes everything a lot calmer.
Maybe you don't have the same kind of thing where you are but I really think it's worth finding out?

Nurses wasn't meant to be in capitals 😂

Mil ( 88 still living in own home ) has had a chest infection for about 6 weeks , she was a smoker so also has COPD & emphysema . She has had a fall so has been admitted to a virtual frailty ward ( who knew they existed )
We don't live very close and can only see her weekends ) but dh sister can call in more regular. She has mild cognitive decline yet is expected to remember to take her blood pressure ( by supplied machine that links to hospital ) plus her sats and she often can't remember if she's done it or even how to do it.

Eeek I'd heard about those virtual wards and wondered how they work in practice!

@EmotionalBlackmail

For her not so well , as she often phones us to ask how to do it ! ( from 200 miles away !)

@Frostine that is madness, MiL broke a heart monitor she was sent home with pre dementia diagnosis but with telltale signs of struggling, she just couldn’t listen to instructions. I think changes are needed to training when 2/3rds of hospital patients are pension age and above, a portion will have dementia, maybe early stages of confusion and struggling to follow instructions. (My mother who is told time and time again the mobile phone issue is the WiFi not a broken phone being an example, would not cope with anything virtual!). Relative in third year of medicine has yet to cover elderly and dementia from what I gather. Hasn’t a clue - tbh they lack common sense and life experience and can imagine thinks tech is the answer….

@SeriouslyAgain MiL is in a nursing home now, been there since last summer. Prior we did see and speak to DN. my last conversation with one reduced me to tears as she couldn’t visit, couldn’t get a Dr to visit and insisted I call 999. I refused because MiL didn’t need or want hospital. She shouted at me then rang me back and says she had called 999. Paramedics the most patient fab team, concluded she didn’t need hospital she needed urine tests and possible infection. What a waste of NHS time and money. This happened 3 times, Dr or DN insisted we ring 999. One crew told DH that majority of their work was more like SWorkers trying to tie up correct help and arranging blood tests etc. Maybe it is a London thing, we are in a London health Trust. I also got a call from Dementia Nurse service, the kindest and most understanding lady who said they don’t have ability to refer patients back to Psych for review, even though we all knew MiL needed a review. Only her GP could do that….,

Update - MiL still in hospital on IV, nursing home don’t want her back until she is compliant with taking her medication - they don’t have IV facilities. Told DH they have had problems with patients being discharged too early from this hospital. DH will visit today.

Oh Juneday I'm so sorry. It really does depend on the individual and the team leadership doesn't it. And yes, aside from the trauma for all involved, it's such a terrible waste of NHS money.