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?

I take it your parent is the frustrating head-in-the-sand variety?

No personal experience but plenty of third-hand experience. Sensible accommodation for loss of mobility (install a domestic lift or stair lift), explain your finances and set up LPA would be on my to-do list.

Yes very much so.

I just don’t understand why you wouldn’t make the exact plans you’ve described.
They’re now saying no way to a home, adult children are at the end of their last rope, having dealt with years of mini crisis after mini crisis. And they can’t manage a thing on their own, mobility, eating, washing, finances, admin. Nothing.

When they were initially diagnosed they were well enough to make plans, had the means etc.

It honestly blows my mind that an otherwise intelligent and capable person just let this happen. I would love to know if this is deeply untypical or perhaps not…

Unfortunately one of the features of Parkinson’s seems to be that it can make the sufferer very apathetic. So whilst they logically know ehat they should do, they can sometimes slide into this utter shit show that you’re currently experiencing.

A relative gas early onset and luckily he is being more proactive, albeit being led by the nose by his DW who will be left doing everything when he’s no longer able.

Thank you, I’m not sure it’s apathy (or was apathy, now it’s far too late) but it’ll maybe help me to be a bit more understanding. The compassion tank is running on empty!

Edit to add that there weren’t even any plans to make plans or concrete ideas, despite much prompting from me in particular.

I don’t know why I’m fixating on this now, when it’s far far too late.

I can only begin to imagine. My DM has Dementia, but moved to a sheltered apartment years ago and had LPAs in place and that is hard enough

@Frivolatte sorry to hear of yet another family in this situation. Can I ask what they were like years ago? Was there any element of ‘bury their heads’ ‘kick the can down the road’ about other life decisions? If the answer is yes then I doubt they will change now. When my EP was diagnosed with PD I got them in touch with a fantastic local support group run by two ladies whose partners had eventually died after a long term battle with PD.

My parents utterly refused to engage. I went along - several sessions a week including socialising-it was enlightening and everyone had a story to share.

I also think PD diagnoses in a younger person is very different to that in an 80 year old. In my case my parents basically retired 30 years ago and had a lovely time doing what they fancied but made zero plans for any adaptations for later life. Good luck. It sounds like you need the conversation about a nursing home that will be able to cater for them long term. Eventually the authorities cannot just have them lingering in a hospital setting as they will require EMI care referring to older, higher-needs nursing care for advanced dementia in specialist units, while EMD is for earlier-stage dementia needing residential support, though EMI is now often replaced by "Specialist Dementia Care". Explain to them if they do not make some decisions the decision could be taken away from them and they may end up with a Deprivation of Liberty order on them, Essentially this means they have their liberty removed for their own safety.

Hi Op. my df doesn’t have Parkinson’s but has a similar degenerative condition which is slowly taking away his mobility. He is also burying his head in the sand. We have been saying for years now he needs to either move to bungalow or install a downstairs shower room. And to get help in to upgrade various areas of the house with hand rails etc. but he just refuses. It’s so frustrating. He now has “a fall” probably once a week with bruises and sometimes stitches required. And still won’t make the changes. He just says he doesn’t need it yet. We try and say, it is better to do it before time so everything is in place in case you need it. But he just says he will install whatever is needed if the time comes that it is essential. To me, that time is now. But there is no convincing him.

Parkinson’s isn’t dementia though? They don’t need to end up in a home if their house is sufficiently adapted?

My DF had Parkinsons but managed to stay at home due to my DM being very fit and able and happy to be his full time carer.

It’s a tough slog though. He was diagnosed in his early 60’s and suffered a pretty steady decline from then until his death around 10 years later.

He was a highly educated academic man who struggled to accept that he had to effectively give up being in control of his life as his physical and mental capacity worsened over time. The last few years were brutal for my DM and I think at the end she was relieved he was finally free of his suffering as he had a very poor quality of life for the last 2/3 years.

I wouldn’t wish Parkinsons on anyone.

Can you let his GP know that his house isn’t adapted, he’s falling and you think he needs an OT assessment?

Would helping him move to sheltered accommodation be an option instead?

Have you had a discussion about what is stopping him making his home more safe? Is it not wanting to spend the money, finding the process of knowing what to do, getting the right people in and going through the building work too overwhelming or something else?

@purplejeanie my father has PD with Lewey Body Dementia and the EMI/EMD nursing requirements were specified by his consultant and HCP staff. They specifically suggested finding a home that would be able to care for him long term.

As many others have experienced my parents refused to acknowledge adapting their home at all until it was absolutely crisis time and by then he never returned to the house.

Some people simply will not or cannot adapt to diagnosis which means changes are needed rather than wanted. Some people simply refuse to or are unable to see that if they ‘WANT’ to remain in their own home then they ‘NEED’ to make adaptations.

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.

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.

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

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.

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.

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?

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.

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.

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?

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.

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.

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.

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

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.