What Dying People Want is a doctor writing about his very human journey through the suffering of the terminally ill and the desired emotional and practical responses from health care professionals. Most importantly, Kuhl addresses situations and how to approach them for best results, always bearing in mind that what the patient most seeks is some sense of control over his life and the treatment of his illness.
I remember it was always a hassle getting out the door on the morning of Chris’ doctor’s appointments. He liked them to be early in the day, I think because he felt best able to cope then–his energy levels seemed slightly higher in the morning, though he soon flagged.
We lived a good thirty kilometres drive through rush hour traffic, and at the end, paid horrendous hospital parking lot fees. Then there were the interminable hallways, steps and elevators to negotiate within St. Paul’s. For Chris, these sessions were exhausting. Near the end, the toll on him was severe.
But he had been treated at St. Paul’s from the night of his very first heart attack, when we lived in the West End five minutes drive from the facility. And in the end, the young doctor who had treated him then became the head of St Paul’s Cardiology Department, and in the years between, he and Chris built up a good rapport.
So David Kuhl’s book, based on research done at St. Paul’s struck a chord with me.
Several aspects of the book appeal to me. Kuhl introduces each chapter with quotes from patients, followed by an anecdote, legend or myth that speaks to the theme of each chapter. He uses his own experiences and those of terminally ill people to illustrate their concerns.
I found it to be practical and profound. Any comments you may have on the book would be appreciated. Just email me at email@example.com
These next few blogs are based Dr. David Kuhl’s book, What Dying People Want., based on his research and experience as a palliative care physician serving at St. Paul’s Hospital in Vancouver, B.C.
A client of mine lost her husband to Alzheimer’s last year. As his main care giver, she read everything she could find about people’s personal struggles with Alzheimer’s. This literary journey hasn’t stopped with his death. In her grief, she continues to read about other families’ experiences and the disease that took her loved one.
I read them to find out how other people dealt with it. You know, what I could have maybe done differently? And what I did right, she said.
This is her list of titles:
Before I Forget by B. Smith and Dan Gasby.
Come Back Early Today, by Marie Marley, Ph.D.
Slow Dancing With a Stranger by Meryl Comer.
The Long Hello by Cathie Barrie.
To Johnny With Love by Dagmar Christine Albert
My Mom, My Hero by Lisa R. Hirsch.
When Breath Becomes Air by Paul Kalanithi.
She also recommended two books that are fiction based on fact:
Inside the O’Briens by Lisa Genova and
Turn of Mind by Alice La Plante.
Those of you who are dealing with Alzheimer’s may recognize certain aspects of your situation as you read. I hope you find new solutions and humour as well as pathos in these books.
Thanks, Donna, for sharing.
My mother had Alzheimer’s. Well, actually the doctor said it wasn’t possible at that time to distinguish between Alzheimer’s and other similar conditions. This poem is a response to her condition and the research I did at the time. And no, it doesn’t rhyme.
Grasping at Research Straws
Frontotemporal dementia (FTD)
not so innocent as online florists:
scientists redefining quality of life.
A protein—progranulin-necessary to
nerve cell function; to remembering
luncheon dates and appropriate
behavior for same.
Clinical research indicates inadequate
progranulin production’s a genetic
mutation causing FTD.
Too late for Mother. Send her roses;
long-stemmed burgundy petals
peeling down, like the velvet dress
I once found in the back of her closet:
deliciously sexy on anyone capable
of flirtation and desire…
does progranulin or lack of it affect
Initial research may lead to treatment
in time, but Mother hovers nears the finish.
I wish researchers Mackenzie and Feldman
Mothers with progranulin rich minds.
frontal portal into the brain:
sensors removed, wires crossed.
isolation, depression, short circuitry
rerouting synapse to blank space.
gummed up placque, synapse
box cars skidding off the rails.
scientists probe cause and effect:
in effect the brain shrivels
and we die, wandering homeless
in a vast carapace of skin.
God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. These words from the serenity prayer are familiar to many people. They make sense.
But as a caregiver, many times you feel hopeless to change anything about your current situation. For awhile, Viktor Frankl felt helpless to change his situation, too. Frankl was a German psychiatrist who spent several gruelling years imprisoned in Auschwitz.
Suffering the most cruel and humiliating deprivations, he observed: “…everything can be taken from a man but one thing: the last of the human freedoms–to choose one’s attitude in any given set of circumstances,…”
Frankl spends a large part of his book, Man’s Search For Meaning discussing the issues of attitude and responsibilty. As caregivers, we sometimes have this responsibility thrust upon us.
Suddenly one or both parents are no longer capable of living on their own. Or perhaps severe illness suddenly strikes a spouse or a child, a sibling or a friend. Or a family member becomes the victim of an accident or crime.
When called upon to respond to these situations, people may sometimes feel a certain sadness, due to a loss of personal freedom, a life schism that was unanticipated. There are times when tempers flare and caregivers may wish to fight against the unfairness of the situation, or resist the restraints caregiving puts on them.
While the focus is on the patient, the caregiver struggles with feelings of inadequacy, disappointment and sometimes even resentment.
This is wholly natural, and bound to occur. However, once the initial shock wears off, it is important to recognize what it is within the situation that can be changed. One aspect that affords change and which will bring the most benefit to you and to your patient is your attitude.
Take a person who resents being a caregiver. Perhaps they were thrust into the situation, perhaps they felt they had no choice in the matter. This attitude will create a negative atmosphere for both the patient and the person caring for them.
The effect, however, will be most harmful for the one harbouring the bitterness: every day will be a new source of irritation, frustration and general bad feelings.
But if the care giver can bring themself to the attitude that it is important to be the one who is accompanying the patient on his last journey, that it is a journey that demands dignity, humour and kindness, the days will pass very differently for both the patient and the person caring for him.
As Frankl notes, in dire situations, it is not always what we expect of life that matters. As caregivers, we must ask ourselves, what does life expect of us?
And for each of us, Frankl believes,a ‘unique opportunity’ is presented when we find ourselves confronted with severely challenging situations; an opportunity to find in ourselves a previously unfathomed capacity to act with dignity, compassion and honour.