Parkinson’s diagnosis- did your EP make any plans?

[Frivolatte]

If your elderly parent has been diagnosed with Parkinson’s, what plans, if any, did they put in place for their future living, care & financial arrangements. What worked, and what could’ve made everyone’s life easier?

Or did they just put their head in the sand and think the condition wouldn’t progress? What was the outcome?

My elderly mother falls into this category. I can see her heading towards some kind of disaster in the not too distant future.
She was diagnosed with PD almost 4 years ago and is now 87. She lives independently in a bungalow but from the word go hasn't wanted to make any changes to make life easier or plan ahead for when it will be needed. Any suggestions are met with resistance and refusal. Apathy is now a major concern. She has always been a very difficult person with covert narcissistic traits and the hardest part is her regularly telling me how she struggles with most things (like getting on her hands and knees to get out of the bath), but then still resists any suggestion on making life easier and safer for herself and for the family members who care for her. The financial side of things is not a concern.
Her behaviour is odd most of the time and I have difficulty working out what is PD, possible early stages of dementia or just old age.
Things could be so much better for her now if she hadn't dug her heels in from the word go.

I agree with this sentiment. It is such an impossibly hard illness and it feels strange to feel resentment or to blame (obviously if there are previous issues in the relationship, then that’s more understandable).

@purplejeanie @Ohpleeeease I understand your points about not blaming people for resisting changes at the point of diagnosis and I recognise that @purplejeanie does acknowledge previous issues can contribute to resentment. PD diagnosis tends to come after several years of health issues and investigations. I have said it before, old age is never going to see difficult people mellow and see that what they need and what they want are at opposite ends of a spectrum. An example I will use is this. Around 12 years ago I had my lounge redesigned and installed a large flat screen TV. My mother made a huge fuss about how common flat screen tvs were/are. Nothing new there she is the real life Hyacinth Bucket. Anyway my father loved it as he could see the screen.

Just before Covid I was visiting them and I casually asked him if he had watched a sports event I knew he liked. His response was ‘no point’ I can’t see the TV’.
When I suggested buying them a bigger one it was met with a point blank no from my mother followed by ‘we aren’t those type of people’.

His life would have been much more pleasant if he had the TV for company but it was a flat ‘no’. He loves the TV in his nursing facility they do not have it on all day but watch the lunchtime news, films, sporting events etc.

it is very altruistic of you @Ohpleeeease for not blaming them for not making plans to make your life easier but when you have two people who have gone out of their way to live life exactly as they want and consequently created an utter mess for their wider family it is hard to not feel some resentment. We have had a lifetime of them being difficult. As we also age it is exhausting dealing with the fallen house of cards.

I’m not judging anyone else, my comment was really to remind people that someone who has been diagnosed with this awful illness is entitled to focus on themselves first, and other people second.

FWIW my DF had no prior health issues. He was taken very ill on holiday and was feverish and delirious. We believe whatever happened to his brain in the course of the fever triggered the Parkinson’s, which was diagnosed two years later.

That’s a tough one @Ohpleeeease

Parkinson’s affects you mentally too, have it, 63, 9 yrs in.
unexpcted symptoms

I think it was very hard on my DM too as many of her plans for her own retirement were sacrificed.

I don’t know how one can prepare but I do understand how frustrating it is as a carer or supporting family member when the sufferer won’t face up to their limitations.

It’s certainly nasty, my dad it, roughly 7, died at 85, I have it at 63, 9 years in, worse than he was.
Full of the unexpected

There is a form of dementia which is Parkinson’s related, @purplejeanie. My DF developed it. He had very real hallucinations of animals, which I understand is common in Parkinson’s related dementia.

No happy stories here. MIL had Parkinson’s and. they were in denial for years. Whenever they did make adaptations, it was generally too late by the time FIL got organised to respond. They had their bath replaced with a walk in shower eventually - but by that time MIL could barely stand unaided, and she couldn’t work the style of tap he’d chosen 🙄.

The one good thing they did was to sign POA, to change their property to tenants in common and to remake their wills to leave assets directly to children. Also they separated bank accounts.