Thoughts from my nana’s hospital bedside: The word no-one wants to say
A couple of weeks ago my 96 year old nana fell over in her rest home and broke her hip. It was a bad break and the doctors said that though they were very unhappy putting her under and operating because of the risk, they couldn’t just leave it as it was. So she then underwent an operation. We were advised of the very high risk of both surgery and recovery for Nana.
This has all happened ‘coincidentally’ (if you believe in such a thing) while I have been here in NZ for the first time in years….so I have gotten to be part of it all.
In the hours after the operation they thought Nana was going to die as her heart rate slowed right down. She didn’t. Then again a few days ago they called us saying that she had become non-responsive and they weren’t sure if she was having a ‘funny turn’ or dying. It seemed to be a funny turn as she snapped right out of it by the afternoon and went from non-responsive to ummmm…overly-responsive. (I take my hat off to nurses who have patients trying to hit and even bite them while crying out about conspiracy theories and being a prisoner, and manage to keep some degree of patience!)
There have been, of course, many conversations with doctors, specialists and nurses….but….and here’s what inspired this blog….not once has anyone in the hospital said the d-word. Noone has said “she might die”, “she could die in surgery or recovery” or even “we hope she doesn’t die” or anything like that. They’ve completely avoided the word or even any of it’s unhelpful euphemisms like ‘passing away’ or ‘losing her’.
It might seem that it is respectful or gentle or something like that to not say ‘die’ or anything like it….but it’s really just fear. No-one wants to say it out loud. The ironic thing is that almost every conversation with the doctor or specialist IS about death. Often accompanied by that stereotypical lowering of the voice and tilting of the head just slightly to the side and sentences that taper off…..
“We’ll just have to watch and see what happens over the next 48 hours…..”
“Has the family discussed how they feel about resuscitation….?…..”
“Even for a woman her age who didn’t have dementia and a weak heart this would be risky….so for your grandmother……”
“This is a”, very deep head-tilt here, “very risky operation soooooo…..”(turns palms over to face upwards in a bad-things-might-happen-but-I can’t-say-the-word type of way).
And, my very favourite, on the day they thought she was dying last week so called us up….”You might want to come in…if you’re the type of person who would want to come in and see her….” I wish I’d played devil’s advocate, pushed the doctor and made him say the words. “See her before what? What exactly might happen?” I could’ve asked. But…and this is really daft…because no-one else is saying the words….neither am I! Now I am aware of it I will cut that right out.
The d-word is a bit like ‘he who shall not be named’. Voldemort Voldemort Voldemort. Yeah I said it. Death die dying die dead dies died…and all other deadly style words.
‘It’ That Shall Not Be Named
Just like with ‘Lord Voldemort’….avoiding saying ‘die’ or discussing death in any way won’t stop it happening and isn’t positive thinking. To talk about death isn’t negative thinking. Death is natural and very important and it WILL happen to you and to everyone you know and love at some time or other, whether you talk about it or not. To not say the word is simply denial. And for the hospital not to be saying it is fear disguised as ‘consideration’ and ‘sensitivity’. So it looks gentle and polite…but it’s still fear. Likely they have been guided what words and phrases to use….and what not to….but that is still fear – society’s fear. Refusing to use the word is kinda the same as standing in the corner thinking people can’t see you if your hands are over your eyes…..so take them off and have a good look around.
To say ‘death’ is to look the situation straight in the face…and why shouldn’t we? When we get clear that Nana might die we can think about what time we might want to spend with her, and what we might like to say to her…instead of living in a denying state of fear, hoping the unsaid won’t happen…and generally taking for granted that we have the luxury of tomorrow. Maybe we do…but maybe don’t. And this doesn’t just apply to a 96 yr old women with a weak heart and dementia recovering from a hip op in hospital.
It might also seem like it’s sensitive to Nana not to say the words….but how does that help her? As she said herself a couple of days ago “everyone has to go some time” and trying to hide from her the thing that she knows is true isn’t helpful.
“Fancy all this fuss just to keep someone alive!” she said after being seen by 4 doctors at once, choking down all her pills and almost coughing up a lung in the process. Well, fancy all this fuss just to hide from the reality that we will all die.
This is the ultimate Death Cafe. The perfect opportunity to talk about death.
My Nana had an operation and almost died. She may still die from it. We all thought she would die….but now it looks like she might well live for quite a while. I am open to either as either could happen.
DEATH. Say it out loud. Look it in the eye. Face the truth. Name the thing you are afraid of. Realise it is not your enemy, or unnatural, or a punishment or something you can avoid. Spend some time with it. Because it is much easier to cherish the time you have with someone when you quit pretending that you have time and realise that every single breath is precious.
Kristie
xx
{ 15 comments }
Hi Kirstie
Have just shared your link on the OSHOsammasati facebook page.
So pertinent – as I put there it was exactly the same with my father, who did die in hospital, aged 92. The doctor before he went in was saying nothing was wrong with him (except he was dying, tho he didn’t say that). The doctors in hospital were looking for what was ‘wrong’. It would have really helped to face DEATH. As with you I didn’t say the D word either.
Keep up the good work.
Yatro (j mackay)
Hey Kristie,
You are in good company as last week I was with Stephen Jenkinson – Griefwalker – and he said exactly the same thing.
blessings,
Leo
Kristie, great insight here! It occurred to me as you were describing this experience that it almost sounds as if the doctor is kind of probing the family’s reaction to his circumlocutions. Almost as if he wanted you to do exactly what you thought of doing, filling in the trailing off sentence with the d-word. I suppose it might be that he tries to leave the door open on the communication, so that, by finishing the sentence, the family can signal somehow that they are prepared to hear the full story, or, more likely, signal that they don’t want to. I have no doubt that most are relieved not to confront the subject if the family shows they don’t want to, but I agree that the doctor does not serve the family well, or the patient, by being too weak to help them face facts.
Hey Kristie how true everything is you say. I have realised over the last two years that I have also used massive avoidance tactics relating to death. Throughout my life I would avoid using the words dead, death etc, if someone died I would fleetingly pay attention then put it out if mind or avoid whenever possible. I couldn’t face making a will. I realise now that I seriously thought talking about death would make it happen sooner. If I didn’t talk about it or pay it any attention I seriously hoped I wouldn’t happen. Even though I went to funerals heard tales of death I felt if I didn’t overthink it wouldn’t happen to be. Obviously I was proved to bevery wrong using this strategy of protection. My lovely Dad was struck down with lymphoma and we had to face the conversation with consultant as you described. Dad died a week later. I was and still am devastated. I have realised my lack of a positive and accepting relationship with death has seriously affected my mental health since losing Dad. I have struggled to grieve properly as I feel I am still in shock from the fact the it has actually happened. My avoidance strategies did not work, people in my life and myself are going to die and coupled with Dads death it has created a massive trauma for me. As a society I now feel we need to embrace the inevitability if death more openly, starting in childhood. It not wrong to discuss death it’s wrong not to.
<3
Yes, good to know there are others of us saying it’s time to face reality. Consciously faced and prepared for, in our view, death can actually be the climax, the peak of our lives!
Cheers!
Thanks Yatro!
xx
Ooo I have heard the name but haven’t checked him out. Do you think I would like his work? I’m assuming I will if you do!
xx
Hi Nora,
lovely to hear from you!
I think it is still too vague and egg-shell walkie even if doctors are trying to ‘sensitively’ allow the family to bring up the dreaded word first….it’s still a fear-based thing. Still just adds in to the same cycle, doesn’t it? We’d never catch a doctor doing the same around birth.
Yup it certainly doesn’t help when the professionals can’t help people face facts, as you say.
Hope you are well
xx
Hi Dawn,
I love that last sentence – absolutely perfect.
And don’t worry, despite where you have come from and where you feel you are now…things can still change so very much and in such a positive way for you. (Just sitting down tonight with my emails and about to reply to yours!)
K
xx
I absolutely agree Maneesha. Death is such an important part of our lives. The more people can start to talk openly about it, the more they will be able to see it in a different way.
xx
yep. it’s the reality. waiting for the other shoe to drop. Kristie, thanks for saying the D word. Thanks for taking the time to share this journey with us. So many times death has touched those around me; so many times everyone is uncomfortable. My thoughts are with you and your family. And I hope there is much peace for you. Kindness Always, Arlene
Hi Kristie, When I read your blog I thought you were talking about me, as I have just been through an almost identical situation with my own mother, who is 92. I had one refreshing discussion as I was giving consent as my mothers advocate, when the doctor gave one of the complications of the op as DEATH, at least it was there, out in the open and I could talk about it. After this, although she had many crisis, this was avoided, as in your case.
I am a nurse by background, down to earth and comfortable with talking about death, even though I show appropriate emotion, I want to discuss what will, at some point, be inevitable. If possible I want to plan for it and give my mum the most dignified death she can have, as she is, and always has been, a very dignified, proud person, even with her memory problems, delusions and paranoia. I felt without facing up to the word, and so the situation, the hospital would not give her this respect, so am so pleased she recovered enough to go back into the place where she is safe, respected and who do talk about death with dignity and in some way, hope.
I wonder if it is a power/control thing with hospitals, as they think they are the only people who can handle dying? Just a thought.
Diane xx
Hi Arlene,
Thanks for your lovely post
K
xx
Hi Diane,
I never thought about that – whether it could be a power thing. It might be in some situations. Or that they feel it is up to them to make things ‘easier’ and ‘gentler’. But as you say we need to face up to it.
K
xx