I’ve put off writing this message for several years - reading the ‘so exhausted waiting for someone to die’ thread many times, knowing I’m not alone. But now I’m a at complete breaking point and need an external viewpoint.
My mum has advanced Parkinson’s disease. Diagnosed 11 years ago. She’s been widowed for many years. I’ve been responsible for her wellbeing for the past 8 years. There is no one to help with her care but me. My sibling lives abroad. Mum’s sisters are in good health and live locally but refuse to help in any way or in any emergency/crisis situation. I have young children, work full time, and am often single parenting as my husband works away a lot.
Mum’s Parkinson’s is so advanced she has district nurses attend her house twice a day to connect her and disconnect her to a medication pump that administers her medication. She has a cleaner one a week.
In the last two years alone (and there have been many many other crisis’ before this) she’s been in hospital about 6 times for various health crises.
She’s currently in hospital after a second traumatic bout of delirium, confusion and hallucinations whereby she was found screaming in the streets asking strangers for help, rambling, crying etc. She’d also overdosed her antibiotics in confusion and had refused to go to hospital earlier in the week even though the intensive health service team recommended she go with them to hospital. This resulted in a call from her district nurses late one night, telling me they had to leave her to go to their next appointment, but she was a danger to herself, and I had to go over and wait with her for an ambulance that would take 12-14 hours to arrive. Having been in this situation before, and now having PTSD from the trauma, I stood my ground and refused to go. I also couldn’t go as my child was extremely ill with flu. The ambulance then arrived in 30 minutes. It was extremely stressful and is only the very tip of the iceberg to all the emergencies I get drawn into that causes untold levels of trauma. I’ve had a breakdown from the stress and my career has suffered greatly because of it.
This is Mum’s second episode of delirium since last October.
Outside of the delirium episodes, these are the sort of things that happen a lot:
gets scammed financially by scam callers
failing to renew house insurance and other
fell in her garden this month smashing her shoulder
stuck face down on her bed unable to move and almost smothering herself
repeat middle of the night crisis calls to her Careline for numerous reasons ‘is confused, feels sick, can’t move, feels faint”
completely frozen and can’t move, nevermind walk
struggling to order her food online which she’s done for years
struggling to pay bills without help
gets frozen, can’t move and can’t turn the oven off resulting in emergency calls to me where I’m expected to drop things and go (but I often can’t go)
incoherent speech and not able to follow a conversation
repeatedly ignores boundaries and turns up at my house banging on doors and windows to come in when I’m at work (I work from home in a senior role) and won’t and can’t understand why this is not acceptable
reduced ability to risk assess
her friends called me last week to say she needs a care home and they can’t cope with her during coffee outings because they have their own health needs
increasingly unable to maintain her house
hours and hours every day of complete immobility
However, due to the complex and misunderstood nature of Parkinson’s you could meet her on a good hour and she’d be very mobile and able to mask really well.
She’s obsessed with her image and looks fairly young for someone in their late seventies. She still dyes her hair blonde, insists on lipstick and although extremely thin and frail now, does not ‘look’ like an elderly, white haired lady. Which I sometimes think makes medical teams assume she’s more capable than she is.
I also think she has early stage dementia due to personality changes, but she ‘passed’ the memory test recently as her short term memory is still mostly ok.
They want to discharge her from hospital and for the first time ever I’ve said I don’t think she is safe to live at home anymore.
There are a thousand more sad episodes but I don’t have the energy to write them down.
I am a broken daughter. Utterly broken by this and feel like this can’t go on.
She is extremely resistant to a care home and has said several times the only way she is leaving her house is in a coffin. At this rate, I feel I’ll be in a coffin before her from long term stress.
Last week was the lowest of the low after a week of zero sleep with a child with flu who ended up in a&e and every single agency possibly calling me about my mother who was delirious and also in the same hospital at the same time . It was too much. It is too much.
Everyone around me is saying she is no longer safe at home and should be in a nursing home.
thoughts?