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at the best of times so I decided to not call for two weeks as I found her call frustrating, presuming she had withdrawn information from me purposely to upset me.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
- dementia
- 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.