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

@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.

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?

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.

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

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.

@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.

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

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.

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.