Managed to get my Living Will legally signed off this week.
Not in the least worried about dying as such, but deeply concerned as to how and when I do it. In effect mine says “ Don’t treat me or keep me if I am no longer likely to be me “ (ie intact brain and able to communicate.)
Which led to some wondering. About that term ‘Me”
The job of the medical profession is to treat me, maybe cure me and certainly to keep me alive. For which I am thankful. The Living Will defines “alive’ from my point of view. ie what I think ‘being alive’ means.
But what happens if I am ill, in hospital, but not dying. Maybe semi conscious? How do they know who the “Me “ is they are trying to preserve? What makes “me” tick? Even more, what would degrade that inner “me”, depress, destroy confidence, threaten future independence or just be unnecessarily distressing?
Why am I suddenly worried?
Because there is, I hasten to add, quite rightly, a movement to ‘End// /PJ Paralysis’. To get older people dressed and up out of bed as soon as possible. Dont loose strength, dont become institutionalised, back to a normal routine, socialise over ward lunch etc.
It works, it is right. But it is not for me. That is not my normal! *
Could they enforce it? Would I have the right to say “No, but thanks”? Or would I be seen as the stereotypical difficult old lady? My mother was…..see this blog.
Incredibly scary to think so.
Suspect we now need a Living InPatient Will,
or perhaps a “This is me” directive?
Delighted to find that Healthcare Improvement Scotland have published this;
Many pages of good advice about such things as potentially needing a Power of Attorney, listing your allergies, naming carers. Well thought through. We should all do it.
But it doesnt quite cover what I had in mind.
I want to cling on to those things that make me ‘ME’, the self centred pleasure loving self indulgent creature I have become ….and too late to change.
(And at 83, I have never been ill or in hospital, so maybe that is an OK life style?)
Here is the basis of my Living Inpatient Will.
Written for fun, but I shall give my family a signed copy!
Sleeps a lot and enjoys it, very much. Siestas forever! But only on a super soft bed. Not the Princess and the Pea story. The sad reality is hip bones which are far too big. Lying on them is agony. Suspect I would be moaning and agitated all night. Semi prone position please. (And if you are professionally worried that I should be up and exercising. Please dont be. Being a Physio I have created an exercise regime that suits me very well….almost all done in bed, and I will do it.)
Always reading, and read lying down – with three pillows. Never sitting up in a chair. In fact I almost never sit in one, except to eat. Please don’t put me out (sounds like a cat!) for my own good. It wouldn’t be and I expect I would argue….even sulk.
Very happy to be on my own. That is provided I have a book and my ipad. No worries about me being a lonely oldie. (Is it PC to say that given today’s campaigns?) But not really very social unless it is special friends and then not for too long!
Love this quote from @Ageing_Better panellist “Loneliness is the Pain of being alone, solitude is the joy of being alone”
Hate background music and TV. Love peace and quiet. Having to sit at a ward lunch table or in a Day Room – No! I would resist. Seriously.
These simple things keep me right with the daily world. But most important, they are the normal me, the one I dont usually admit to in public.
But I have a horrible feeling that if I am unwell and in a hospital bed, they will be misinterpreted. Not as me being an antisocial old whatsit, which I am, but as depression. Though having to fit into that kind of ‘normal’ could very well cause it.
Then there are the smaller things that make life worth living—-might even wish to curl up and die without:
Like half a bottle of red wine with Dinner, preferably Merlot? A pre bed Dram? Could a risk averse NHS cope with that!
Please dont wake me for breakfast. Rather sleep. A freshly sliced apple, either Pink Lady or Braeburn with crispbread, a slice of ham and good coffee, around 9.0+? Maybe friends could leave it the night before?
Constant feed for Curiosity and Brain, Podcasts, newspaper, Google , Bridge and word puzzles, Social Media and I pad games ( If I don’t want those, I should probably be in the other Will category of Dont Resuscitate.)
The other things on my list are harder ; those intimate personal things which affect your dignity, confidence and potential future.
Like shaving. My Mother made me vow that should she have to be hospitalised that I would see she was shaved daily. Total embarrassment if not. Me too.
Deodorants. My fastidious old friend was admitted and visiting her three days later was not pleasant. Greasy lank hair too. NO! Who had she become? She would have paid a hairdresser rather than that.
The beginnings of incontinence. See blog
And does anyone talk about ingrowing toe nails? With advice from a Podiatrist I have learned to control mine. But a week or so of neglect and I would be unable to walk. It could be hard to ask busy staff who might not otherwise realise.
Perhaps what I hope a Living Patient Will could achieve is that the Real Me is understood, preserved and returned home intact, maybe even better.