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

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.

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.

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

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.

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

That’s a tough one @Ohpleeeease

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.

@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 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).

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.

It’s good in one way that he has capacity but having capacity also means that he can make his own decisions, even if they are truly awful ones, which he seems to be demonstrating currently. It doesn’t mean that you have to always be on hand though to help him out.

Thank you. Yes that is a good strategy. Yes he definitely does have capacity. He is only mid 70s just now

My DF had Parkinson’s. It was enough for the poor man to be hit by that bombshell only two years after retiring without planning for his deterioration. He and my DM lived the best life they could until his disability made life too difficult for them to manage alone. I wish I’d been more aware of how hard life was becoming and helped them more. I certainly don’t blame them for not having plans to make my life easier.

I would be looking at extra-care places in your position with advice from the OTs about things that will be needed, like space for hoists, etc.

Parkinsons dementia is relatively common it seems, about 50% of people with Parkinsons will develop dementia too sadly. My mother has Parkinsons and I think is developing associated dementia now.

It could be stubbornness. My DUncle won’t do anything if you ask him but if you smile and say “I’ve phoned the OT and the lady said she can’t wait to meet you, she’ll be here Tuesday at 10am and don’t worry, I’ll be here too” he would just go along with it. So we have to present thibgs in a breezy way but as at fait accompli. DUncle was particularly pleased that he got a new free bathroom once the OT had assessed him.

Do you think something like this might work for him? Another alternative is to look up PDA strategies and see if you can persuade him through using those.

What he cannot do though, and needs absolutely pointing out to him, is to do nothing to reduce his risk of falling and expect you to spend hours in A&E with him.

Does he have capacity currently?

Thank you. I do feel resentful when I have to take him to a&e as I feel like he hasn’t done everything he can to avoid the falls. He is the sort of person who doesn’t like being told what to do. So the more I mention the OT I wonder if he gets more stubborn. Kind of letting it go for a while in the hope that he feels like it was his own idea to call them eventually. But I am not sure how much longer I can be patient . Like you say, small changes to the home now could prevent him ending up in a nursing home.

MIL has advanced Parkinsons, no plans made as her and FIL were very much head in the sand - MIL just expected FIL to do everything which he couldn't cope with due to his own health issues, they both refused to move from their three storey monstrosity to a more suitable house.
After a lot of stress they're now both in separate care homes and DH is still stuck with sorting out the house.

After having to deal with quite a few older people in the family I think if you’re having to go to A&E with him or look after him after the falls, your needs trump his desire to keep the house looking the same. I would call the OT and ask for their advice. If he says he won’t let them in or won’t agree to the adaptations would he be more willing if his GP spelt out that he either does make the adaptations ot he will be moving to a Care Home sooner than he planned?

And OP my mum sadly has this awful disease to, we are now selling the house for a flat but its taken a lot of convincing and falls as her house is totally unsuitable but apathy is defo a thing and the anxiety and depression, especially being of a sound mind in a body that doesn't work.

I really wish we had pushed her to move earlier as she would have had more time and strength to vue suitable properties but it now just feels like a rushed job.

My mum has parkinsons and is still at home and its hard for her.

My friends mum also has it much more advanced and is in a home as is almost stuck in a laying position with clawed arms so requires a hoist for movement etc and pretty much 24 hour care, so unless you have a very adapted house and someone who can do 24 hour care then many unfortunately do need a care home. What with washing, changing clothes, feeding, and toilet use or adult nappies.

This is from the US but it is a really clear page on suggestions post diagnosis……https://www.parkinson.org/living-with-parkinsons/management/activities-daily-living/home-safety

Thank you for your reply. In our area you can self refer to an occupational therapist who will come and do an assessment and the necessary equipment would be provided free on nhs. I have given him the number so he can do this himself. But he doesn’t want to change the “look” of the house. I think this is the reason. Even if he had to pay himself I know he has saving for it.

I am trying to let it be his decision and not force the changes on him. Although maybe I should?

It could possibly be the worry about the upheaval of work being done . But I doubt it as many of the changes would be simple handrails.

he just doesn’t seem to think his condition is bad enough yet to do these things.

Depressing thread! My dad was diagnosed a couple of years ago. Mid 60s. Seems very possible that he will also resist these kind of measures.