The Cockroach Cafe 🪳 Spring 2023

I think it's all about assessing if a trip to hospital is going to be much benefit to them and is it actually going to do more harm than good and for what gain. With mum we all made the decision it just was too much for her to go into hospital at end stage dementia.

Sheila thanks for your kind words still very raw as mum only died end of Febxx
Hope I could be of some help thoughx

We had the same a couple of years ago with dad. He kept falling and was complaining of pain in his knee. GP refused to see him either at home or in surgery (covid rules). Eventually mum couldn't get him up and called 999. Ended up in hospital on intravenous antibiotics for a joint infection that has a higher fatality rate in the elderly than covid did. Could have been avoided if he'd had antibiotics earlier. He was in hospital for nearly weeks that time. He kept going in after falls and the consultant wrote to the GP twice saying that phone consultations were not appropriate for a 93yo with complex comorbidites and severe hearing loss before the GP would see him face to face.

Escuse typos 🤣

When MiL feel 2 days after hospital discharge DH and cater were able to get her up and check all was OK. Second fall 5 days later I rang GP who said they couldn’t come and said to call 999. Result 2 more weeks in hospital, no actual injuries, delirium, worsening of confusion and refused food for 2 days. Discharged home and a few weeks in screaming as agitated possible infection rang rehab nurse who said call 999. I refused so she rang GP who once again couldn’t come and said ring 999. Paramedics scored too low to need hospital. 4 days later DN worried at delirium rang 999. DH went round and once again paramedics came and said hospital wasn’t needed but stayed 2 hours until they could speak to a doctor and arrange void tests. Paramedics have always been kind and thorough and ran all tests possible. Told DH they feel they have taken on Social work with more and more elderly. GP eventually visited and checked cough etc and on recommendation of dementia services asked him to refer MiL back to memory clinic because of rapid decline. Likely 2 month wait. GP surgery has 8 GPs. Half are kind thorough doctors, one has sent me with MiL to A&E twice not including above. 🤔🙁

I didn't have health Lpa and I was asked to agree to care at home unless there was an actual emergency. I was happy to do so because it was what mum and I had been doing in her last years at home. I didn't call an ambulance every time she fell, we decided together how bad the damage was, made a cup of tea and had another look and usually decided it would be better by morning. The care home had her whisked away for every bump. By then she didn't know where she was, couldn't hear what people were asking her and it all seemed such a waste of time.

I agreed with the doctor at the hospital that they would tell the home that in future the GP should call rather than there being an automatic ambulance.

Thanks for the info. Are LPA holders able to set up DNARs, advance directives and peace plans?

It has reminded me that when I took dad for a heart scan, he was distressed at the discomfort as he didn’t know why.

And I’m sorry about your mum

@orangetriangle thank you that is really helpful to discuss with DBro

So you can have as well as DNR what is known as a peace plan so the person with dementia isnt admitted to hospital unless the actually actively break something. My mum was admitted to hospital as they thought she may have sepsis by her care home. She didnt it was her dementia. It caused her extreme distress crying out constantly asking where she was etc laying on a trolley in a corridor. It caused everyone extreme distress to be honest for no gain as there was nothing they could do. They asked us about signing for a peace plan so that she didnt have the upheaval and distress again. Best thing we did. It also meant when she stopped eating etc she wasnt admitted into hospital she had her end of life in her care home in familiar surroundings with staff her newher well and treated her with care live and respect. It was February so bitterly cold and it meant she could stay put in her own warm bed and warm room at her care home. Definitely something to considerxx

I made it “sensitive content” in case others didn’t want the questions in their feed

These are the key questions, the rest is heath-care professional details

@GordonBennett345 let me see if I can photograph them without identifying details

https://www.resus.org.uk/about-us/news-and-events/resuscitation-council-uk-introduces-version-3-respect-plan was the respect form discussed with us when dm was in hospital.
I think it has to be done by a medical professional with patient/ lpa holders.

Ah, they haven't given any forms (yet)

@GordonBennett345 i visited my dad today at his new care home (he moved last month) and have been given those same forms to discuss with DBro and DM

Care home asked for our thoughts on treatment for dad if he goes into hospital. We asked for a meeting to discuss properly. Dad has alzheimers, no capacity, we have LPA. Has anyone else been asked about this? Are we talking possible DNAR and advance directive? Could we do those, if we wanted to? What else might they mean?

@EmmaEmerald unfortunately it's a bit worse than that as they are mixing used incontinence waste with the recycling. The council have been very understanding up until now as my parents have always just thrown anything into whichever bin they fancy, but this time it was open bin liners obviously containing used incontinence pads, so unsurprisingly they refused to touch it, mum's answer was to put more next to the bin rather than in either bin.

Re the bins
Is the problem more about contaminating the recycling?
It seems incredibly harsh to judge anyone for accidentally putting recyclables in the general waste...especially as a lot of councils just put everything in one dump anyway.

What happens when you call the council to explain?
i'm in a block of flats but actually, with bins in the street, a passerby could open a bin and put rubbish in.

@Newmum738 yes, I think it is. The waves of anxiety come less often, last less time and seem less intense. I also have therapy where I can talk about things, but it wasn’t enough on its own.

@SheilaFentiman I've been alcohol free for about 18 months now so this could work for me. Is it having a positive impact?

@Newmum738, I have been struggling with anxiety over the last few months due to concerns regarding my parents. I take propranolol, which you take as and when you need it, for the physical symptoms of anxiety and also promethazine hydrochloride (which is basically a strong antihistamine) to help me sleep. The GP gave me these about a month ago and they do help. However, I am seeing the mental health nurse in a week or so to ask about longer term options as well.

I was encouraged to read a really good book called ‘Dare’ which tells you about a way to manage with anxiety- there is a brilliant app alongside this that I listen to often. That has made the biggest difference for me in coping currently.

Would appreciate your collective advise...
We have been notified by parents social worker that they have had 2 safeguarding notifications in the last week from healthcare professionals who visit my dad at home due to physical health needs.
Both are about my mum's aggressive and foul language towards my dad.
Will the GP now have to do something to assess my mum (currently GP says it's a social care issue, social care are saying it's a medical issue)
Do the social work team have to refer these safeguardings to the GP or do they just get closed like everything else because it's about my mum's behaviour and she hasn't done anything truly awful (yet)
The social worker said she would be emailing the GP but can't send me a copy of the email as she has no consent from my parents to share information.
We're constantly in the dark and dealing with a situation which even professionals are now stating can't be left.
For clarity, dad is physically disabled with many medical needs, mum is showing aggressive behaviour and stating she doesn't want him in the house, she's leaving and not coming back, swearing at him every time he asks her something. They have a care package of 2x a day visits carers help change his bed and other practical tasks. They don't need help with personal care. Mum openly declared that she hates him.

@NNewmum738 I take mirtazapine and it helps a lot.

Hi @Newmum738 i am on an SSRI for anxiety, have been for a couple of months. Dad’s decline has definitely been one of the factors. I think the medication is helping. Can’t drink on it, though, which is occasionally annoying!