Mum being passive in hospital apps and her care. Ignoring / not understanding letters

[WorriedAboutMum2023]

My mum is late 70s. During covid she has got noticeably frailer and less steady. She has some bad falls on standing and lays on the floor for over 6-12 hour's unable to get up or calling for help. Her gp mentioned parkinsons. She was told it was a 2 year wait to see a neurologist but saw one within 9 months. I asked if she wanted someone there at the appointment, but she said no, she is difficult at the best of times. The neurologist said it wasn't PD. But did tests, including a mri which showed age related changes and hydrocephalus. She gave me and my sister two different accounts of the conversation and she is difficult at the best of times so I decided to not call for two weeks as I found her call frustrating, presuming she had withdrawn information from me purposely to upset me.

Anyway, I phoned her yesterday to see how tests or possibly treatment was going. She said she has a Dat scan which is for Parkinsons, I asked why if they had ruled out PD? She had no idea what that scan was or why needed, hadn't asked. I asked if she was having any hydrocephalus treatment or tests, she didn't know. I asked if I could come to her appointments, told no. I asked if she write down questions to ask in appointments. She then said she didn't understand any of it, she is ignoring the letters!

I got her to read some. She was reffered to a teaching hospital in London, but they reffered her back for more tests locally. Asking to rule out other causes of dementia! She didn't understand any of it, said she regrets getting the tests. I looked up her consultant and he is elderly medicine not neurology.

I relayed this info to my sister but I think there is big denail here. It's looking like mum has

1. dementia
   
2. parkinsons
   Or 3) hydrocephalus with no treatment plan. Which will cause irreversible symptoms of 1 and 2 if untreated. It's already been about 2 years of ignored symptoms.
   
   None of those possibilities has a good outcome. Sister thinks she will insist on attending the next consultation but 1) no idea when that will be and mum doesn't know 2) mum won't tell us.
   
   Any ideas? We aren't a family that talks about these things and certainly not great at support in a crisis. I have 3 school age kids with SEN and ehcps. I am waiting to be allocated a MH social worker for years of extreme stress and burn out related to schools. Also my dhs cousin in her 20s has just been diagnosed with terminal cancer. I don't know if I have this in me. I'm the fixer and saver but as you can see, getting a MH socail worker is serious burn out. We never talk about how we are coping. Mum and sister have zero idea what's going on with me. I have no plans to discuss that either as it will be glossed over and minimised. Much like mum's situation.

[WorriedAboutMum2023]

Yes she has fallen twice but that was from getting off the sofa and suddenly loosing strength in her legs. I don't think she banged her head either time. She definitely has normal pressure hydrocephalus as it was picked up on CT and confirmed by MRI. That is the only thing so far diagnosed

[MereDintofPandiculation]

The health poa is ready for mum.to add her wishes, preferences then sign.. I don’t think the wishes bit is compulsory. If it isn’t, may be better to put wishes in a separate Letter of Wishes rather than risk OPG rejecting the POA because she’s put something that can’t be achieved “if I get dementia I want to be given an overdose”

[WorriedAboutMum2023]

@MereDintofPandiculation

The health poa is ready for mum.to add her wishes, preferences then sign.. I don’t think the wishes bit is compulsory. If it isn’t, may be better to put wishes in a separate Letter of Wishes rather than risk OPG rejecting the POA because she’s put something that can’t be achieved “if I get dementia I want to be given an overdose”

Ok I didn't realise that. I will read that section notes and remove it. If mum is diagnosed with parkinsons are they look at the results I think it just needs to done. Mum doesn't like talking about these things, sibling isn't engaging so I was thinking if mum is going to refuse the spinal tap, that should guide her future choices. So if you refuse a spinal would you want any surgery? Would you want to be tube fed? I don't think so. Ideally I'd sit down with my sibling and have this talk buy its being shut down.

Again thinking and mulling this over last night, it's up to mum to tell my sibling what's going on. Even if we get lpa in time, and sibling never asks, is it MY job to inform? What about when I say things in writing like "she is being tested for parkinsons" and there is no acknowledgement of that sentence? Just trying to manage my expectations and protect my mh here. I'd be delusional to think my sibling would be active on the poa.

[EmmaEmerald]

I don't think there is any legal obligation on you to inform sibling if only you have POfA.

But as they are listed as next of kin, they will get told things, if your mum is considered not to have capacity.

re the choices - are you asking what you should do if mum doesn't have capacity? I think tube feeding can be pretty inhuman and I agree that someone who refuses a spinal tap is unlikely to want surgery. But I'd go on a case by case basis and see what doctors say at the time.