I was talking to various friends in all sorts of different living situations yesterday and I’ve come to the conclusion that the advice to be in a bubble if you live alone and are fed up of your own company during the seemingly neverending crisis that we all find ourselves in is all very well, but it’s just not that simple. There are people who live with others and who are still very lonely and in reality, even for those who qualify for ‘bubbling’, finding a household to partner up with can be quite tricky.
Not many people seem to raise this issue even though it is very real and I have to wonder if this is related to the stigma attached to living alone or admitting to feeling lonely. Of course in spite of the many stereotypes and assumptions that exist within society, being lonely and living alone are different things. They may not be mutually exclusive but living alone does not automatically mean that one is lonely while it is possible to have constant company but exist in a constant state of loneliness - - oh dear, I am now meandering way off-track .
As a single person living alone with Parkinson’s disease, I totally understand that I’m hardly an attractive proposition in terms of ‘bubbling’ and while I have some very good friends, most are already in a bubble crisis caused by trying to choose between an older child who no longer lives at home and at least one parent who lives alone. To be honest, I am actually fine as I am but I know people who are not however being seen as potentially ‘needy’ in any way can make people wary of getting too involved for fear of being seen as future carers.
Personally, I do not want any of my friends, or family members, to feel obliged to provide any level of support for me that goes beyond friendship but my battle to be seen as an individual living with Parkinson’s as I am (in the here and now) rather than being defined by the worst case Parkinson’s scenario that may be my experience at some point in the future - and who really knows what the future holds for anybody in terms of health status - has not been helped by the recent marketing campaign. Without any explanation or follow-up to the advert, some acquaintances have internalised some very strange messages as to what my symptoms actually are and what my disease progression is going to be. Suffice to say that I have finally managed to convince one that I am currently totally capable of driving - though I strongly suspect I am now off the list of people who can be called on for emergency childcare - and have just about recovered from another crying down the phone at me for a very long time.
On the plus side, my car broke down a couple of weeks or so ago and when I called them, roadside rescue services asked me if I had any medical conditions so I answered honestly. I’ve never had a bad experience with roadside rescue services but the speed with which somebody got to me on this particular day was startling; maybe they’d seen the advert too .
Anyway, I am not going to go on about PUK’s current campaign; I can rationalise the thinking behind it and I can also just choose not to see it - though that does seem to mean not accessing any of PUK’s online support services services unless I circumvent the homepages but I still have this choice. It’s a shame that I cannot impose the same restriction on some of my friends and acquaintances but there you go .
On a more serious note, this whole situation has caused me to think about long-term care, medical care and Parkinson’s.
I totally understand that for very many people living with Parkinson’s, the involvement of family in both medical and general care is both very welcome and very gratefully accepted but I live alone and personally, I do not want friends and random relatives being encouraged to get themselves involved in my medical care and make decisions on my behalf while I remain perfectly capable of making decisions for myself. My concern is that some help and advice sheets appear to be encouraging those in my life to consult medical professionals treating me without any mention of the need to discuss this with me first. I may end up suffering from cognitive decline but then again, so may my friends and relatives and there is no suggestion that I should get involved in their medical care until such time that it becomes necessary. I sometimes feel that my diagnosis of Parkinson’s has turned me into some sort of non-person who has suddenly lost all sorts of previously assumed rights.
It really is just a personal opinion but for me, equally worrying is the implication (or maybe assumption?) that families have no option but to take on the care of a relative with Parkinson’s Disease. I know that many people take on this role out of love or a sense of duty and provide a very high level of care for many years in spite of the incredible toll that this takes on their own lives, and I firmly believe that there is not nearly enough support for people in this position, but I also know of people who take on this role because they feel that they have no choice even though they do not have the capacity/ability to do so. This can lead to dire consequences for all parties involved but with the lack of monitoring of such care arrangements along with the already existing dearth of neurology support services and a likely move towards digitalisation of services following this crisis, where will any safety nets be for those living in informal care situations that have gone disastrously wrong? I have to admit that one good thing to come out of recent events is that I will be having a conversation with my siblings about this as soon as I am allowed to meet them face to face.
Of course, returning to the marketing campaign that I wasn’t going to mention again, the societal problems caused by Parkinson’s Disease (those of us living with Parkinson’s Disease) will indeed be solved if a cure is eventually found but that won’t help me in my lifetime and in the absence of a functioning social care system or any improvement in treatments/a cure, I’m not sure what the answer is. Having said this however, I still don’t think that the assumption that all family members have a duty to take on the role of long term carer for a sick relative, along with the assumption that people with Parkinson’s should have to accept the role of being cared for by relatives irrespective of whether this arrangement is right for either party, should go unchallenged.
Having rambled on way too much in the early hours (as ever ), it may well be that nobody reads this - or anybody who does loses the will to finish it - but on the off chance that somebody has both started and got this far down my ramble, I’m just wondering if anybody knows if I do now have to explicitly inform medical professionals (and I include services such as speech and language and OT under this heading) that I do not want them to talk to family members or friends without my permission or can I assume that I still have the right to expect confidentiality in this respect - unless I am at some point formally assessed as lacking the capacity to make my own decisions - because I am increasingly unclear about this?