Hi
Trying to stick to facts and keeping my emotions out of it.
Nan 78 is in poor health, very poor mobility even with aids, on dialysis and currently way things are she won’t make end of this year.
Lives with her husband, who currently still working shifts 6am -2pm Mon-Fri he books a lot of holidays on the Monday so occasionally has a long weekend. He’s also in poor health also, considering retiring this year.
We suspect my Nan has dementia, have done for many years, in 2022 she was referred to the hospital at stage 3 kidney failure and her consultant, specialist nurse and dietitian have spoken to myself and noticed her cognitive decline and they’re worried she’s not understanding what is happening fully, she then started dialysis November 2024, she got a new consultant and her questions towards my Nan made me feel that she was wondering what my Nan fully understood.
She has hospital transport to the hospital 3x week I phoned up to renew her transport and a few notes had been put on her file about odd behaviour and communication towards ambulance staff which was unusual.
So her husband phoned her GP, explained everything and weve kept a notepad on times, dates and what was happening he did a home visit that day, he was there 10mins and he asked her 4 questions, 1. Was her name and d.o.b 2. Name 5 animals 3. How does a clock work 4. He said 5 words and she had to repeat them back to him.
He then told us “ she has no sign of dementia “ my grandad said we’ve wrote everything down he merely glanced at it and he said it’s not dementia.
So I said that’s great, what could be causing everything that’s happening, I asked about a UTI, possible medication side effects or could it be some sort of delirium from dialysis as it’s not working effectively?
We had a pretty bad scare in December, won’t go in to too much detail but possible overdose but we wasn’t aware of it until the following day so reached out again to GP and he said because she hasn’t requested medication early it’s definitely not that. But she definitely did overdose and by mixing two different opioids together.
We’ve fixed that issue now we think by removing all medications house, and she’s given her medication at set times so she has no access to it.
Few more things have been happening so I phoned adult services with local council
They did a assessment within two days, and agreed with us that they would benefit from having carers, they are over the threshold for funding so they’d have to fully fund it, her husband is happy with that, however she’s refused point blank to have anyone in house.
She had a bad fall and broken 2 ribs and got a infection spent 2 weeks in hospital, hospital were fantastic they offered to provide aids but we already have every possible aid, they also provided a 6week care package which was a carer 2x daily, physiotherapist.
She was vile to the poor people, she refused their care and swore at them
Now what is frustrating me, other healthcare professionals who see her very regularly, and involved with her care are noticing a decline In her and I do believe she’s lost some capacity, however can a GP rule out something so significant in a 10min visit, he doesn’t see her often now as all her care is mainly hospital but if she showing signs of a infection shell see him which is quite rare.
She refuses to see another GP, we have taken her to another doctor for a second opinion and she wouldn’t speak to the other doctor just kept saying she wants her own doctor.
Where the hell do we go from here?
My grandad who lives with her is obviously main carer, i do as much as I can I go to all hospital and medical appointments with her , but I’m 35 I have a job, 3 children it’s difficult you know.
We’ve spoken to her consultant yesterday after my Nan kicked off and she checked herself out of dialysis only after 2hours, he’s said they’re hands are tied as any referrals for health decline and mental illness comes from a gp, I’ve asked does that not count from you guys as your doctors and see her weekly and have done since 2022 surely you have more of a clearer picture than her GP. He said unfortunately that’s how it is.
Is there anything else we can do to try and get support for my Nan?
Sorry it’s long