In the 1990s I was fortunate enough to be enrolled on a six month course specialising in the care of the Spinally Injured patient. This was based at the Southport Spinal Injury Unit , which then had unique experience in caring for patients who had total paralysis of their bodies, including their muscles which initiated breathing.
Many of these patients would be ventilator dependent for life.
I got very close to one man who I will call Jim.
He was in his thirties and had broken his neck in a car accident . The injury was so severe that he would need ventilatory support over night but could come off the vent during the day after which he could breath for himself albeit only for a few hours. He could feel his face and talk in a whisper but had no physical control over his limbs, body and head.
My shifts were always weekday mornings with afternoons off for study, and so every morning I would take Jim off the confines of the ventilator, wash, dress and feed him and prepare him for physiotherapy
And every morning he would cry silent tears when woken with suction or the changing of his tracheostomy inner tubes.
One day I asked him about his morning bursts of emotion
And I remember so well the conversation as we were alone in the hospital gardens, Amid the raised planters, which were specially designed to be viewed from a wheelchair.
They were full of lavender and rosemary as I remember
“ Every night I dream Im flying” he whispered “ And every morning I wake to this”
And for the first time I properly realised the impact of injuries like his.
I couldn’t speak.
What could I say?
I just nodded and rested my hand on the side of his face, where he could feel the contact.
I was going to hold his cold unfeeling hand, but the gesture would have been lost,
Jim killed himself a year or so later. One of the physiotherapists wrote to me to inform me.
He had simply stopped eating and had refused escalation of care when finally admitted to a general hospital with pressure sores and renal failure.
There was no Dignitas back then and there was no where to go for a quadriplegic who couldn’t move his own hands to explore the usual methods of ending ones life.
He had to die painfully and without dignity
Which is a place no one should go.
The above clip is from a film I watched last week called The Sea Inside ( Mar Adrendro)
It is about the struggle of a Spanish sailor Ramon Sanpedro, who fought for nearly 30 years to be allowed to die after his spinal injury accident.
It’s a hard watch
This scene brought my conversations with Jim flooding back
Of his tears in the mornings
And his dream flying at night
We are fragile, yet robust, one bad moment can change so much. When I started reading this I wondered, if he had a choice, would he want that life, as I read through he told us the answer.
ReplyDeleteYou were almost there David x
DeleteI walk past the entrance to the Spinal Unit most days JG. In one of your posts you wrote that hopefully one day there will be a Dignitas Clinic on every street corner (something like that) and I hope so too, my lovely Mum had the support of the hospice, and whilst I will always be eternally grateful for the care she received, she often told me she had had enough she had accepted that it was not the cancer that would kill her, but it was her time to go. I mentioned to you once that I did voluntary work at the Deva, I think I was on Saughall ward, one the the patients told me she had a son, I asked did he visit she said NO, he lives far away, so I asked where, she replied Birkenhead. I was 15 and made a promise to myself then, that if my parents were ever in a hospital I would visit them everyday, a promise I kept. All the best JG XXX
ReplyDeleteDignitas is only useful if the person wanting its care has capacity
DeleteCapacity is the answer…..
And who seems capacity ?
"seems"?, oh.. do you mean deems? Figuring a way through all the un-proofed typos is a problem here you know. It's like a cryptic crossword at times.
DeleteSometimes I wish I had more time to check autocorrect
DeleteI have been working overtime today
A sad story. What is also sad and appalling is that when he was admitted to hospital he had pressure sores.
ReplyDeleteThe pressure sores were unavoidable
DeleteHis control precluded him being turned at home, he refused to have his pressure cushion checked and his emancipated condition accelerated the sores from occurring. Sometimes the best “ care” cannot be given when the patient is of sound mind but refusing
"emancipated"? ... emaciated? (hardly emancipated surely?)
DeleteEmaciated , dam auto correct
Deleteauto-correct can be turned off, although that might be worse? :)
DeleteMy spelling is dreadful I am first to admit it, I suspect I’ve a bit of dyslexia …I often cannot “ see” words in my mind
DeleteFunnily enough I have much professional experience of many people with dyslexia and I see no evidence of it in yourself, for what it's worth, all I see is the need for a quick, or perhaps slow, proof check before submitting.
DeleteI bow to your experience xx
DeleteBut I’m lazy, and I’m busy
And I don’t always check my replies
To be honest I’m not that bothered
A few spelling errors are normal for Going Gently
Deleteanonymous, I would sure like to know how you turn off auto correct.
DeleteJohn what a dreadful, dreadful story. I am a member of My Death My Decision and have a fund put away to fund Dignitas should I need it. I so firmly believe that we should be allowed to choose and to maintain our dignity. Brought a lot of tears to me this morning.
ReplyDeleteSorry pat…don’t watch the movie x
DeleteOne needs capacity for Dignitas and friends to help you. My friend went to Dignitas a few years ago. She couldn't have done it alone.
ReplyDeleteAnd the assessment of capacity is fraught with ambiguities ….
DeleteWhat a sad story. I worked at the Prom Hospital in the 70's, on the orthopaedic wards and did a few stints on the spinal unit. Mostly young men, whose lives had been changed in an instant. Assisted dying will come - one day, I hope. I remember my Mum asking me to help her die, she'd had enough. What could I say. xx
ReplyDeleteI’m ambivalent about assisted dying
DeleteA terrible situation for the patient, carers and relations. By trying to ensure no harm is done, society creates another dreadful harm. This breaks my heart.
ReplyDeleteSouthport did some clinical research into quality of life issues with high quadriplegics on ventilators . It found most would want to be resuscitated in case of arrest….
DeleteThe sample numbers were low
I also questioned the methodology
Thank you for this post as it helps me to reaffirm how lucky I am. We take so many things for granted, even simply breathing.
ReplyDeleteOf course we take things for granted
DeleteWe all do
I have always believed in quality of life not quantity.
ReplyDeleteCapacity as well of course.
I hope I would be brave enough to do the right thing.
Sometimes life at any cost IS important
DeleteThanks for sharing this, John. xx
ReplyDeleteA sad memory
DeleteMy friend Ali went to Dignitas last September, she had to go while she was physically able to get there, and before lockdown kicked in again. Fortunately, she was already registered with Dignitas, it's not something you can just decide to do when you need them. I try to remember Ali when things go wrong and I feel like moaning...
ReplyDeleteI’m so sorry….ithink assisted dying is hardest of friends who often stand in the wings
DeleteIt was a privilege to know her. She always made me laugh, right up until the last time I saw her (2 days before they went to Switzerland). She even made that easier, by not saying it was the last time, but left me a letter...
DeleteI'm reminded of the movie - The Diving Bell and the Butterfly. May we all have life and death with dignity.
ReplyDeleteAnother important book everyone should read
DeleteHow desperately sad. We are so cruel not to allow medically-assisted suicide to those who want it. Things are changing now finally, though.
ReplyDeleteThings are. Changing but they are slow
DeleteWhat a heart-wrenching story, John, and how eloquent were Jim's words.
ReplyDeleteWhen FIL was dying, I learned that in the end stage of life, pressure sores are inevitable as the skin breaks down, too.
Hugs!
They are called Kennedy ulcers
DeleteYears ago, my husband was in his late 30s and terminally ill. He was cared for at a large VA Hospital, but once terminal, his care reverted to the local VA. His last visit at the former VA included a long talk with his doctor, witch included his determination to end his life at the point he couldn't care for himself. The doctor kindly prescribed medication for sleep, but warned him of the danger of overdosing. To this day, I see this as a gift that enabled my husband to deal with his decline. Turned out that he died a natural death.
ReplyDeleteUnderstood x
DeleteI used to be a social worker.capacity is certainly the issue
ReplyDeleteKeith
Nice to hear from you again
DeleteI’ve emailed you,
DeleteKeith x
I remember when my sister-in-law's sister was dying of cancer my nephew asked me why when an animal is in pain it can be put to sleep peacefully yet his aunt had to due slowly and in pain or fully drugged up! Broke my heart. x
ReplyDeleteThe difference is that animals don’t know they are dying
DeleteInjuries like this, and other conditions which take away almost everything physical, but leave full awareness, I think are amongst my worst nightmares. I really don't know how Stephen Hawking was able to keep going for so long.
ReplyDeleteMaybe because the most important part of his life was in his mind...that and incredible willpower?
DeleteI have seen literally hundreds of people COPE with spinal injury
DeleteSome , obviously with varying levels of abilities but that’s true of us the “ able body “ members of society
It also brings full force on how bad we don't have it.
ReplyDeleteWe only think we do.
Thank you for your sensitivity to a being who was in so much pain. Mind pain.
You can’t empathise with these patients EVER all you can do is be there
DeleteNo not empathy ,but a touch.Sensitivity.
DeleteWow. What a story. That poor man. I saw "The Sea Inside" many years ago and remember it was very powerful.
ReplyDeleteI’ll pick a happier memory next time
DeleteIt is when we read stories such as this that we must realize we are truly fortunate.
ReplyDeleteAll we can do is live life eh
DeleteI watched a programme on the tv twice where someone chose to travel to Dignitas-I would have helped my mum if she had asked me but in 1991 I had never heard of it-she left in agony pleading for pain relief and me begging the nurses on the ward for help-they said they had called the crash team and we needed to wait but it was a long time coming-it was traumatizing and I was helpless- With my dogs I have cuddled and lay alongside-I have sang to them and spoke to them words they understand-my top dog definitely heard me reminding him of certain things and he got comfort from my voice x
ReplyDeleteStrange as it may seem , in my experience people cry more and show more emotions over pets than they do over their next of kin…it’s sort of allowed to be more emotive
DeleteIt's strange to read this story today as I watched the film Me Before You yesterday about a quadriplegic and his family wanting to change his decision to go to Switzerland. As I watched I could see reason on both sides, as a mother you'd never want it no matter what but as the patient I could see it was what he wanted and could understand totally. It was a good film. I'm sorry your patients real life experience wasn't what films are made of. Very very sad. x
ReplyDeleteYes, that’s quite a good film and shows the emotional difficulty of being “ fed” by someone else. The actor who played the patient was impressive
DeleteBeing in healthcare, you have a better understanding of our eventual deaths. Selfishly, I hope to go in my sleep. I lost a brother and father to a sudden massive heart attack.
ReplyDeleteMe too ann , although I have a fantasy about my funeral
Deletewhat kind of hell it must be to be a prisoner in your own body.
ReplyDeleteSome people cope remarkably well, it’s not all dire
DeleteWe are all prisoners in our own bodies, and just heads actually, all of the time, however mobile, and for some, rather many actually, that is sufficient hell for them to take the same route out as the patient did
DeleteUnderstood , I agree
DeleteYou gave great comfort to that young man.
ReplyDeleteI do wonder why it is so difficult to allow adults to make choices about how they die, especially if incapacitated or not wanting to live with a terminal illness? Of course the living never want to let go of their loved ones, but sometimes it is crueler to keep them on artificial support if that is not what they want.
The movie clip was beautiful and sad, just like your story. Thank you for taking care of people who need the comfort.
I don’t think I did
DeleteWhenever I can't find the words I send you two xx instead.
ReplyDeletexx
Xx
DeleteYour story is a testament to both Jim and his story. Thank you for sharing. Oh to feel the hand of someone on your cheek during this trying time for him and the comfort it brings. I am grateful that California has a death with dignity law. Hard won but just approved a couple years ago. I hope Jim is flying high!
ReplyDeleteRuth in California USA
We all need a hand on our cheek
DeleteI am reminded of this blogpost of fifteen years ago
Deletehttps://disasterfilm.blogspot.com/2006/02/little-actions-of-kindness.html
Oh. Brutal.
ReplyDeleteA very moving post. Well done. I read through all the comments, too.
ReplyDeleteLove,
Janie
Sadly, Jim was a prisoner in his own body and systematically decided he did not want to live. I very much support the right to die. Some states in the USA have legalized this. Vermont being one of them. The catch is you have to establish residence.
ReplyDeleteThis made me cry. Why is it that we can comfort each other in the decision to end an animal's suffering, but a human making the decision to end his own suffering is controversial?
ReplyDeleteThis clip has made me cry. Of course, a lot of things make me cry since my husband died, but this one really hit home. Not that he was paralyzed, just that I think about having things back the way they were before he got sick. I think you did well to think of a gesture that could possibly have brought some comfort to your patient. I hope it did.
ReplyDeleteI remember the post! I never met Winnie, but I miss her, too. I can hardly imagine what you feel.
ReplyDeleteIm not upset, your poignant and beautifully written post quietly shattered my heart...my husband died without dignity.
ReplyDelete