Hello! Welcome, and happy Halloween ๐.
Now the truth of the matter is our Parkinsonโs (or whatever diagnosis you have) is unlikely to be in isolation.
โOk, Emma, we need clarityโ
I hear you, dearest reader, I hear you.
What I mean to say is - it is pretty unlikely that PD is your ONLY health thingy. Even us Young Onset folks are far enough along the road to have a few other twitches and ailments.
I, for example, have a form of arthritis where calcium deposits on the outside of my bones, mainly the spine. It looks like melted wax on a candle in the X-raysโฆkinda cool. Whenever I break a bone, which is fairly frequent (thanks to crap balance) it heals with a big lump instead of knitting internally, making it vulnerable to further cracks and chips. Just, please, wrap me in bubble wrap!
This can mean that I am unsure what thing is causing my painโฆParkinsonโs or arthritis? Both? Or something else like a cold? It makes treatment hard. And thatโs just the physical, then there is mental health.
We all get ill and most of us will become so with something long-term, degenerative or terminal. It is part of being human. But no one prepares you for the multi-tasking multi-symptom juggling act that this can bring.
And I suppose what I am wondering is should we prepare for inevitable illness when we are younger?
I am in the UK and currently, we still have a vaguely functioning national health system. Something we have been fortunate to have, but that is moving ever closer to an insurance-style model. We have been a little guilty of taking it for granted, and perhaps, therefore, taking the fact that we will be cared for in our illness and retirement. But I donโt think even in places where you operate a different system people necessarily pre-plan for illness.
I donโt know what illness preparation would look like but I think I am really pondering mental and emotional preparation. Humans are odd - we know we are mortal and yet, certainly, in the Western approach, make few or no plans for decline and death.
I know from speaking to some of you that the idea of planning our funerals and death wishes is too painful. I understand completely. It is hard and I would love to see a supportive conversation around this topic. Gently but habitually talking to family and friends about your wants, wishes and making it ok for them to speak openly about their fears for the future.
It was incredibly hard to talk to my children when I was first diagnosed about the future as they were 11 and 16 at the time. But we have all reached a position and age where we have a fairly clear picture of what I want and might need. Also what they need.
One day I will require hospice care and probably need intense care before that and I donโt want my children to feel they have to provide - they deserve to know that I do not expect hands-on care from them. But it has taken lots of gentle conversations about this topic, tears and denials that they would ever put me in a home etcโฆto reach the acceptance that that course of action may well be the perfect one.
To be honest Iโm trying to convince them I need to live in a nice luxury hotel nowโฆNo housework and room service wine would suit me nicely!
It has taken, as it does most of us, for me to get critically ill before putting this stuff in place. I would love there to be a less stressed and more emotionally calm time to have organised these things. Early preparation isnโt bringing mortality closer, it is being in control of what we can, now, and allowing space for the inevitable.
If we are prepared it allows time for the grieving and all the other small but important bits to have space. My mother-in-law is on a mission to โdie tidyโ - she has everything organised, decluttered and tidy. This means when she dies her sons will have all the paperwork and arrangements catered for and they can get on with the grieving instead of wrangling an unsympathetic system of lawyers and bureaucrats.
I would love your thoughts on these ideas. As ever drop me a message, comment below and share with anyone you think might benefit from my rambling :)
Finally, if youโd like a copy of The A-Z of Parkinsonโs, you can buy one here or get it free when you become a paying subscriber.
with love
E xxx
P.S. On a lighter note here are our Halloween effortsโฆ
This is a hard conversation to have. We, most of us, cruise though life not thinking about this. Even as caregiver for my Aged M., I shy away from it.
I hope the UK can save and rebuild the health care system that you all have and don't let lazy, greedy governments destroy it. xx
AMEN! I'm 75 with both parkinson's and rheumatoid arthritis. My husband and I are two years out from moving to a retirement home that we have selected. This establishment is 50 miles from my only son and his wife. They objected at first but now they have a newborn and are more realistic about their energy and resources. I started last year getting rid of "stuff" and will continue to do so until we close the doors behind us. Our assets are in a trust. Our will needs re-doing but that's easy enough.
You see, I'm doing what my parents did. They decided, as I am deciding where I will be and what will happen. Any discussions remaining will be pleasant ones so that I can enjoy my grandchild and friends as I can.
Other than that, bring on the bubble wrap!