Parkinson's Disease

[Tupperwarelid]

Hi

This is my first time posting on this board so hope that is ok? My Dad is 80 and has had parkinson's for a number of years. My mum is his main (only) carer and myself and my brother live approximately an hour away. Things have deteriorated over the last three years since my Dad had a bleed on his brain that required emergency surgery and he has never really recovered. He has limited mobility, tremors and the start of dementia. He also hallucinates a lot of the time, especially in the evenings.

My parents won't have carers as my mum says she can manage him herself but she needs a hip replacement and is struggling with his day to day care and the hallucinations.

I don't really know why I am posting but I don't know anyone else who has parkinson's or a parent with parkinsons. Is there any care or carers my mum could apply for? To be honest money is not too much of an issue and I know she claims for attendance allowance and he has a blue badge for the car.

I can't see how the future is going to plan out. I don't have the best relationship with my Dad and think eventually he may need to go in a home especially as my mum gets older and is less able to cope. I seem to be the only person in the family to think this though. My brother says we should just try and help out more but that isn't that easy as we both have young families, jobs and don't live particularly locally. I'm not sure how Parkinson's progresses either, is it likely to be the cause of his death of is something else likely to happen first? (Sorry I know that sounds harsh but like I say I can't see an ending to all this).

Any advice or experiences would be gratefully received. Thank you

Hi Tupper

I'm sorry to hear all of this. My mum has Parkinson's dementia and is now bedbound.
I'm afraid I don't have much advice but something someone told me was that if you think a care home may be needed in the future then look around now, before you reach a crisis point. Fortunately we had already looked around some homes and found a really lovely one close to Dad before one became necessary.
Hopefully someone more knowledgeable will be able to give more advice, but remember to take care of yourself too. If you spend any time on this board you will see how exhausting it can all become.

Hi
It sounds like they are entitled to help. This is what attendance allowance is to help pay for. You should ask local social services to do an assessment, or find a care agency locally to do a visit a day. If they don't have savings over ?£23k the care is paid for. There's a shortage of carers but you may be able to find someone local informally. (We used to pay a cleaner to do shopping etc)
Sounds like it's time to step in a bit- but not by doing it yourself! Important to be firm that you can't do more yourself. Ultimately your dad may be entitled to NHS continuing health care money, with Parkinsons - you'll need an assessment. Good luck.

Under around £23k you contribute to care on a sliding scale. It isn't all paid for. But this is what their life savings and AA is for. To ensure he is safe and comfortable in old age. It's not for your to 'do more', surely wouldn't put that on you anyway with jobs and families of your own.?!

Refer yourselves to social services for an assessment but bear in mind CHC funding is exceptionally difficult to get, so unlikely. Its an idea to find a good care home and consider respite. In the meantime your DM needs to reconsider her stance on carers, plus gardeners, cleaners, pharmacist to deliver meds etc, anything that can make their lives easier. Don't let it be put on you whilst they are claiming benefits for this and have money in the bank. Remember, today is the best he will ever be.
And get POA sorted asap if not done already.

My Mum had parkinsons and when my Dad had to have an operation she went into a home for 2 weeks. Your Mum is going to need a lot more time to recover from hip replacement though and may also need help herself.

My nan had Parkinson’s and lived largely independently for a long time but once the Parkinson’s progresses it takes hold very quickly and I’m sorry to say your mum will not be able to care for your dad.

Unlike your dad my Nan didn’t have dementia so it was the Parkinson’s which killed her, she lost the ability to talk and she became paralysed, her body basically shut down, eventually she couldn’t eat as she couldn’t move her tongue. I’m sorry that’s probably not what you wanted to hear. I think it might be worth reading up as it might be quite a shock, and a lot to deal with, if you’re unprepared.

Is your dad not under the Parkinson’s care team? When my Nan had hallucinations it was her meds that needed changing so worth speaking to them/ the dr about that. The Parkinson’s team were also amazingly helpful at giving my mum and her Brothers advice and helping with care arrangements etc.

sorry you are having to go through this.

Thanks for all the replies. Luckily there is already a PofA in place for both of them. He is under the care of the Parkinson's team and Mum is going to try and contact them and the GP and see what help and change in medication they suggest. She is also going to give the local carer's support organisation a call and see what services they can offer him and her.

I work in a school and was going to go down this week to give her a break and help out with some stuff but have come down with Covid so obviously can't go. Typical eh!

You might find that it's sometimes a crisis that makes them give into carers coming in.

That's what happened with my dad as he was adamant that he didn't want to go into respite care when my mum had to go into hospital last year. They have since realised that mum just can't cope with caring for him by herself, particularly he's almost bedbound and incontinent.

We're 15 years into the Parkinson's journey and I feel this is the beginning of the end now.

MIL has it. To be honest I think you need to let this hit crisis which your mums hip operation is likely to be. We have struggled to get in carers, get uptake in any assistive technology, get her to use a walker, wheelchair, respite but every case a crisis has forced their hands. It is very challenging.