My best mate just said something that will tell you exactly where I’m at right now, “Fuck dementia!”
The scariest statistic out there is, “1 in 3 people born today will develop dementia” - which makes me use many more expletives in turn…
To give some context, I have lived the past few years in a world surrounded by dementia, and have witnessed what this condition does. I’ve just watched my father-in-law fade away with Lewy Body disease (Dementia with Lewy bodies <DLB> is the ‘official’ terminology) and seen its cruelty. Added to that, my Dad has Alzheimer’s disease, I tell ya; “Fuck dementia!”
Robin Williams had the same condition as my father-in-law, and he chose to take control of his own ending. Which made me think about the issue of control. How many of us have said things like – if that ever happened to me I would… fill in your own blank. Because we want to feel that we have control over something when the reality isn’t great.
It’s all about CONTROL isn’t it?
My (paternal) Grandad took his own life when he believed he was losing his sight and he didn’t want to be a burden…
My Mum ‘hid’ how ill she was because she didn’t want to face it (and, I presume, never thought it would be that bad…?…I’ll never know); until she did, when it was too late.
Rather than it actually being about wanting to die, maybe it’s about CONTROLLING something about your end of life care…or having your loved ones aware of your wishes? My father-in-law was adamant that he didn’t want to go into a care home and we managed to have it that we coped at home until he took to his bed in the very end and carers/hospice nurses were called upon to come in to him.
To have it that you pass away in your own bed; or, a hospital bed in your own bedroom at least. We want to feel that we have some control left over the way that we die, and where possible those around us can support us with that.
Sometimes it’s too late; sometimes dying in hospital happens and the trauma that may come with that; sometimes you are needed to give CPR to your nearest and dearest and the trauma that comes with that…what am I trying to say? “None of us are getting out of this alive” and sometimes ‘those left behind’ are the ones who have the toughest decisions to make for their significant others.
How do we cope with supporting those we love in their final days and moments? We simply do the best we can and we make sure we place them and their wishes front and centre. We then focus on ourselves and what we need in the days and weeks afterwards. As someone who has been called upon to offer CPR to a loved one, I have needed to process that and afford myself some time to talk and think it through. Not to have that as my lasting memory. Instead to know that everything that was possible was done.
My father-in-law clung to life; his body was strong…there was nothing actually wrong with him physically, besides the dementia…a big “besides”…and he passed with as much dignity, kindness and care as possible and surrounded by love.
There are 2 things we are talking about here, the control we want to have at the end, and the gift we as loved ones can offer.
All situations are different, and what we are saying is, be kind to yourself. If you are facing your own mortality, life threatening or life limiting conditions, be mindful that your brain will seek to gain control of the situation. But before you take significant decisions, think about the outcomes, and find a path through which allows you the best possible life, however long or short that is. Talk to your loved ones and get control back by letting them know what you want and what is important to you.
‘Cause we don’t, do we?! We don’t sit and have those conversations? When we really should. I feel like there are other countries in the world that have a far “healthier” relationship with death (ha!) It feels like, potentially, we think we are ‘tempting fate’ if we “go there” when we are alive and well. When that’s precisely the time to talk; when we aren’t shying away in fear.
So, I’m going on record, when my time comes: I don’t want any heroic intervention that will reduce my quality of life please; I’d like to ‘go’ as peacefully as possible (preferably at home); I’d like to have the most colourful of funerals with a lot of (rock) music (and a Freddie Mercury-themed coffin…pre-cremation) and I’d like to be scattered in the breeze up at The Donkey Sanctuary here in Sidmouth in their “Field of Dreams” (no gravestone please!) Don’t worry, I’m not planning on checking out anytime soon; but I do think it’s important for those who are left dealing with things to know your (my!) wishes (when I won’t be here to speak for myself)…I’ll hold this blog accountable, ha!
If you are caring for someone in their final months, weeks, days, know that you are giving them the most precious gift, and these days are hard but special. You will feel every emotion possible, and they are all right to feel. Make sure you are looking after yourself, physically and emotionally. Build a support network, don’t feel you have to do everything alone. It is vital that you have people who are with you in this. Be kind to yourself.
If this week’s blog has impacted you – know we see you, and we understand. Take care of yourselves.
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