Hi there. My dad has Parkinson’s and I would say he is perhaps moving into advanced stages following a diagnosis 12 years ago. My mum is his primary carer but me and my sister have LPAs (which we don’t need to use yet).
I guess I am looking for some common experiences and tips because my mum (73 with general poor mobility and only 4ft 10)
Isn’t coping, we all work full time.
My dad isn’t showing signs of dementia. He is very rigid in mobility, has head drop, and although he can walk, he hasn’t left the house in 2 years. He has a mobility chair which he has become reliant on and also a hospital bed. He is on patches and generally complies with medication. He is a retired doctor so has messed with his meds since diagnosis.
My dad is now largely incontinent (both) and my mum has to help him change multiple times a day. Partly as he doesn’t get to the toilet in time. He has a carer every morning for showering and personal care which they pay for themselves. She’s a godsend and she pushes him to remain independent. Trouble is he doesn’t want to be independent! He seems to have resigned himself to his symptoms and wants my mum with him all the time (anxiety). She does a good job of going out for short bursts every day.
During the night he has my mum up every couple of hours for a wee or because he’s uncomfortable. She’s knackered. We took her away last week for a break (carer moved in) and she slept for 12 hours every night.
My mum isn’t coping. But we know a care home would lead to a rapid deterioration. Especially as he has his his cognition.
It’s hard to see how increasing the care hours would help as it’s the nights and the random incontinence which are the main issues my parents face.
I guess I am looking for any advice, common stories and experiences, and anything that might help us with this stage of Parkinson’s and ensuring my dad can remain home as long as possible.
I’m not able to give advice, sorry. However I can send you all lots of love and say how amazing you’ve been coping over the years. I’m sure that you will find a way to help both Mum & Dad. Bless you all x
Difficult situation and no easy answers. What about a live-in carer? Alternatively maybe your mother could get a waking nights carer in, at least occasionally, to cover the nights - very expensive as I imagine your parents are self funding their care. I know from experience that increasing visiting carer hours doesn’t solve the probem as it’s not possible to predict when you’ll need help to deal with incontinence. Hope your mother will get the help she needs.
Thank you. I do wonder whether their current carer might be able to do more hours or perhaps stay over once or twice a month if my parents are prepared to pay for it. This is the most complex disease isn’t it?!
Have you spoken to a continence advisor . There are all sorts of devices to help with the urine incontinence and the adult nappies can be supplied by them. We have a porta pottie ( a camping one) beside the bed.My hubby can manage to slide across onto it and back into bed. No bottles to worry about and only empty it every few days depending on how much it’s used.we have commode liners for if if he needs to poo so no washing out and bag easy to dispose of.the nappy can go in as well. We use large wet wipes for cleaning and a good wash in the morning.I really understand and empathise with you. My hubby has prostate cancer too and is up 6-7 times a night peeing between 800-1500 cl but he can manage on his own with the arrangement we have. If he had to get out to the loo or use a bottle I’d be up too.Its so annoying he can go nearly all day without peeing then up half the night!Care home costs are around £1800 a week. Far better to try and get a live in carer just for the nights and occasional days.