This is a vague question - borne out of being very hypothetical at this stage. My Mum has PD and is not at a stage of needing care but of course will need that support in years to come. I know she plans to adapt her home, ideally have home care I believe, and stay at home for as long as possible. I really hope this will be possible. I know recently of someone who was able to provide support and live-in care for their mother who subsequently died in her own home as per her wishes - she didn’t have PD, though.
My question is, what are people’s experiences of care, particularly at the later stages of PD? Do people with PD usually choose/need to move to residential care at some stage? There is a lot of unknown and what I think ultimately matters is my Mum’s choices - but I guess because I feel like I don’t really know how PD will progress for my Mum (beyond the fact that it will progress), I don’t really have a sense of what care will ultimately look like - trying to get a bit more of a general read on this. Particularly, is it possible that my Mum can live out her whole life at home, at the later stages of PD for her? With the right support.
Good morning hoya-flower … I am very nearly 70 & I live alone & have Parkinson’s confirmed by a positive Datscan, So in a similar situation to your Mum I’m guessing.
I also have an A Fib heart condition & Neuropathy. Mobility is my problem.
I am having my one bed ground flat adapted to my current needs paid for by the NHS as it was a GP referral. I am coping quite well on my own. I don’t really need any other help. I do drive & have just got my blue disabled badge [a big help].
I do like looking after myself. I play indoor bowls most days, so I do see other people & get my exercise.
I will be starting a 6 week exercise course in a gym with other Parkinson’s people at the local Conquest Hospital starting in a few days time.
I do not have any idea how my Parkinson’s will develop. I’d guess I will end up in a wheelchair. I have a had a few episodes where I freeze & can’t move my feet. This seems to last for a couple of days then gets better.
There are many different types of Parkinson’s & none of us know how we will be in the future.
It is important that we all live well & make the right choices with our food & exercise.
Any questions please ask.
Steve2
An elderly friend of a friend of mine has PD. She very much thought she wanted to live at home on her own but had a fall & went into a care home for 2 weeks respite after a hospital stay. She then returned to her home as per her wishes but after a few days decided that she had enjoyed it in the care home & returned to the home to stay permanently.
Steve2
I recently had to find a care home for a relative with dementia. On looking round a whole range of homes, some were so good that I will move to one as soon as I can. One in particular was populated with retired teachers, who were keen to tell me they wished they’d moved there sooner. They have a coach trip every month, and theatre visits, and a cinema on site. That one was £1400 a week though.
Hello Lemon … That does sound a very good care home. I assume the theatre every month is extra, cost wise.
Steve2
In this area (an outer London borough) £1400 a week sounds cheap for the most basic care. I am 77, live alone, and was diagnosed in 2010. I was promised by one Dr that I could easily die of something else long before the Parkinsons became a nuisance.
Hello hoya-flower (love the name incidentally)
You raise an interesting question about the future with Parkinson’s and the future is what many worry about when newly diagnosed. The fact is nobody really knows what their future will look like and it doesn’t generally enter the thinking overmuch of people who are otherwise well with no particular health problems; what is true however is that anyone’s life can change on a sixpence by any manner of events and people adjust, adapt and make decisions about their future when those events demand it.
It could be argued that this should be no different for anyone living with Parkinson’s (or any other chronic condition come to that) but there is one crucial difference and that is we know that ultimately our condition will progress and we will deteriorate. What we don’t know is how, when or what type of help may be needed but nevertheless I think it is natural the future does impinge on our thinking up to a point.
To answer your question in very simple terms there may well be no reason why you Mum can’t see out her days in her own home if that is what she wants and with appropriate support which could be anything from home care services several times a day, regular respite or live-in care for example. Much of the decision making can’t be done until it is clear how her condition progresses of course. It also depends on her particular circumstances and the informal family/friend support that may be available - and I don’t ever assume this will be a given as the carer role can get very hard - but that’s for a different debate.
By way of illustration and maybe giving you something to think about my own thinking about my future has undergone something of a change over time. I live alone in my own flat. It is the only asset I have of any value. My initial thinking was that if I needed to move my best option would be to move into what is called locally flexicare, a form of extra supported housing. This is where you have a flat in a complex with care staff on site. I have my name on the register for this as they allow forward planning and basically they check annually that I want my name to remain on the register and I get a couple of ‘waiting points.’ My thinking at the tine is that I would be off the starting blocks if and when the time came. The problem with this is that on selling up I would have a lot of money in the bank and would therefore be liable to pay full rent and associated costs and my capital would gradually shrink and limit my options if I needed more support than this facility could provide. My thinking now is that the best way to safeguard my capital would be to use it to buy an annuity - a form of insurance policy - and move directly into one of the new style residential care homes which are quite different to the standard care homes most think of. This would also mean I have only one move so could be really settled.
The other thing that cannot be ignored is it is very difficult to know what support will be available in the future as both health and social care faces rising costs, demand outstripping supply and the whole being something of a political football. My own view is that i should do what oan to secure my own future but hw viable this might actually be is anyone’s guess.
One other thought for you to ponder. I sometimes think even now I don’t want the responsibility of maintaining the upkeep of the flat and having to be bothered with shopping, cooking etc etc. It is only a passing thought but it may actually be the deciding factor for me.
I think this has probably raised more questions than answers for you but it is virtually impossible to answer questions about the future without saying ‘it depends…’ which is true of all.
Finally, I know it wasn’t what you were asking exactly but I would strongly encourage your mother makes a Will and has Powers of Attorney in place asap. Whatever her future. life will be easier for all if these are in place ‘just in case.’
Tot