Not even sure on my reason for posting, other than to try to connect with others who have lived through this or just to get my thoughts down.
I don’t want to be referred to the Stage 5 info on Parkinsons or to call the Helpline : ). Even though the Helpline have been very good to me in the past- thank you. I am going to try to speak to mum’s Parkinson’s nurse next week.
So my 80 year old mum has had Parkinsons for 19 years. She has carers x3 times a day and my 82 year old dad (who has his own health issues), is the main carer.
I saw my mum yesterday and she is at the very complex stage. Whenever I see her, I try to get her to engage in whatever task she is capable of at the time (painting with a brush and some watercolour, simple baking etc) and treat it in the same way I do with my young kids- giving the tasks over that she is capable of that day.
However, yesterday was very sad when my recently turned 5 year old had to say, ‘nanny, that’s not how you cut a strawberry’ and some of the simplest of tasks would have her flummoxed/ reach out for things that are not there/ a couple of hallucinations and some intermittent unintelligible speech, even though this was temporary and would be interspersed with managing to communicate.
All I can say is, she is in the ‘consciously unconscious’ stage where she knows she is getting slower, things are getting harder and she knows when gobbledy gook has come out of her mouth.
The reason it’s all so challenging is, where do you even go from here?
- when you should be in a wheelchair but you don’t want to give in to that and so you try so hard, even when it is in vain? She can barely stand, get her feet moving now and yet she will still try to get up which invariably ends in falls.
- I would say she is in that place where carers x3 times a day is sometimes not enough and yet also- is she really ready just to lie in bed indefinitely? How do you continue to see the fresh air and get out in a wheelchair etc when it’s a case of ‘use it or lose it’
I know there are no real answers. The Dr said a few months back that my mum was ‘doing ok’ for an 80 year old with Parkinsons.
I guess I am looking for anyone who has had a parent at this stage of Parkinsons to shed light on how you navigate this stage when you just never know what you are going to get on an hourly basis and everything is just such a risk in terms of falls etc and yet how you still manage to keep things interesting/ bareable. Also, where is the best place when the Parkinsons nurse says ultimately if you can stay at home, you will fare better. Is that still the case when you have an 82 year old carer and when is tje time that the hospice can offer you the care that is needed? How do you know?!!! Does anyone ever know? As you can see, this kept me awake at 2.45am this morning and then gave me nightmares. Thank you for sharing your personal insights.