This thread seems to be following a similar theme to another thread in relation to ‘carers’ and as I was going to respond to your reply to me on that thread, I figured I might as well butt in and post this here instead.
It goes without saying that these are just personal opinions (along with a few blatantly obvious statements) and they are a loosely connected collection of rambling thoughts that may or may not be relevant at that!
I have Parkinson’s. My symptoms are obviously typical of this condition but the range of symptoms that I experience and the rate of progression are, as far as I can tell, individual to me. I want to be seen, treated and listened to as an individual. Most importantly I want to be listened to and that is the one that I find the hardest to achieve.
I will almost definitely need support at some stage and I may well suffer with dementia in the future but I am not there yet and although my chance of developing dementia may be higher than I would like, a great deal of people without Parkinson’s will also go on to develop it. I’m not sure where I’m going with this one but it seems pertinent.
I want to be seen as I am today in the same way that I see my friends who may go on to develop all sorts of illnesses as they are today. I don’t want to be seen through Parkinson’s coloured glasses or pitied because of things that may happen in the future. The past is gone and I don’t have the future yet, what I have is now. Having lived with Parkinson’s for many years, I now choose not to waste time mourning a future that I never had. Others may call it denial but it works for me.
I live alone through choice, it suits me. I don’t want anybody to attend appointments with me at the moment, I want to exercise my right to medical privacy for as long as I possibly can however inconvenient this is to service providers. I do, however, get cross when I am constantly asked about carers and assumptions are made by health professionals about the pitifulness of my single status -that is not how I feel.
If I am forced to access healthcare through digital means, I will have to enlist help because tech does not yet accommodate shaky hands and therefore I will resist digital healthcare until I am empowered to use it independently.
Empowerment in it’s true sense should surely be about enabling me to exercise my right to make decisions for myself and not just about encouraging DIY Healthcare to save the Health Service money. If empowerment is going to be the target then it should be in its fullest sense and that starts with listening to all people and all opinions and all experiences. This definitely does not happen at the moment.
My friend who has a challenging job pays for cleaning services, her cleaner is not labelled as a carer. Why should this be different just because the person paying has Parkinson’s?
The move towards assuming that relatives will automatically take on the care of elderly relatives and those of us with chronic health conditions is, in my opinion, a dangerous one. A little bit of research tells me that the idealised view of extended families caring for and respecting elderly and sick relatives is mostly just an idealised view - though of course it will work for some. Our Society needs to think carefully about how we are going to provide care for those needing it but I am pretty sure that dumping it on the family is not going to work. We no longer tend to live with our extended families and this is something we cannot go back to.
I do believe that my family have a choice as to whether or not to meet my care needs should this becomes necessary at a time when they are still well enough to provide care and I have expressly asked them not to take on this role. I understand that I am asking them to make a difficult choice but it is a choice that I’m asking them to make nonetheless and it is a choice that they have. I may well end up on the street but so be it.
The question surely is whether or not I am worth P
professional care - I increasingly think the answer is not but on the grounds that I cannot even find out what provision is available from my local health services for people living with Parkinson’s I don’t think this is a question that I’m going to find the answer to either.
We are all different. We have different experiences and different influences and different views. I think this is very healthy and I enjoy reading other people’s thoughts because it helps me to shape my own. I may or may not agree and others may or may not agree with me but that’s ok.
Thank you for sharing your experiences, thoughts and views. It has given me something to think about in the early hours when I am inevitably awake . Jx