Patients, Nurses, Doctors: What Caregivers Need to Know.

Have you ever felt betrayed by or angry at a health care professional?

Perhaps you thought you were not getting complete information about diagnosis and treatment plans.  Or maybe you felt certain aspects of the treatment, diet or delivery of medication could be done in a more effective and less intrusive manner.

Many of us who are caring for the needs of our loved ones, who act as advocates in the doctor’s office, at the nursing station and in the face of home care workers can find ourselves suppressing feelings of anger and resentment.

Both the patient and the caregiver may be reluctant to express concerns. Some simply may not know to whom or how they should put their questions.

For those patients and caregivers these unexpressed concerns can cause anxiety and even conflict with those in the health care community whose very job is make life easier for the patient.

Dr. Kuhl, a palliative care doctor, suggest that sometimes doctors and nurses can be so familiar with certain diagnosis, treatment plans, and even the hospital environment that they fail to take into account the patient’s lack of understanding of processes and terminology.

Ask questions, be proactive in your quest for knowledge about your condition, the diagnosis, the treatment plan and what all of this means for you or your loved one.

Decision making should involve your input.  Family and friends can assist you in this endeavour.

Why is it so important to understand what is happening and how?  Because Dr. Kuhl’s research has shown him that suffering is diminished by both the patient’s ability to understand his situation and his sense of having some control over the treatment path.

This column is inspired by Dr. David Kuhl’s book, What Dying People Want: Practical Wisdom for the End of Life.

Remembering: Different Approaches.

On this, the anniversary date of Chris’ passing, I remember. I play his favorite songs on the car stereo as drive to his grave site. I drive the old T-Bird he got for my son. If no one else is about, I’ll rev the engine as a salute on my way out.  While I’m there, I tidy up a bit; trim the grass, water the flowers or add some new ones.

Of course I chat with him.  He always said he wanted to be buried rather than cremated because he wanted somewhere people could come and visit him.

Some anniversaries I’ll make a coffee date with those who were special to him.  Like the great gal from the Benjamin Moore paint store who would always put on a fresh pot of coffee for him.

He was a good man and my great love and these are my ways of remembering.

 

Everyone honours their loved ones in their own way.

When my brother died, my sister in law, Kamla, arranged a memorial scholarship for Jack.  Anyone can still contribute if they like and it helps young people shape their future.  A hockey and softball coach, Jack was always interested in helping young people develop their skills.  Well thought of at work, Jack’s employer had a bench installed in the local high school grounds dedicated to him.

Also, my brother loved to camp with his family on this one particular site on Arrow Lake.  Now every year Kamla hosts a big camp out, with games and remembrance balloons that carry felt pen messages into the sky on the anniversary of his death.  Cousins, nieces, nephews, siblings, grandkids and friends from all over come for this annual event.

In some cases, budget restrictions dictate how we will remember our loved ones.  It really doesn’t matter.  Whether you have a mass said, or party hearty, it’s the thought, the memories and the heartfelt love that really count.

A Compassionate Insight Into What Dying People Want by Dr. David Kuhl

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 margaretjean64@google.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.

Local Hospice Societies Offer Caregiver and Bereavement Support.

During the days of tending your loved one, you are constantly engaged.  Doctors, health agencies, pharmacists, family and friends are all involved in the work you must do.

But who do you talk to when you’re suddenly feeling overwhelmed or dismayed?  Or when you need respite care?

Or perhaps, like me, those days are over.  And like me, you may suddenly find those days that were filled with innumerable tasks suddenly stretch before you in an endless array of emptiness.

Everything is quiet and still and you begin to feel the pain.  Where do you turn for help?

Thrift shops have always been a mecca for me when I’m down–looking over the items seems to help me focus on something other than my present state.  One day when I was in the White Rock Hospice Thrift Shop, I mentioned to the clerk that I was trying to find a source of grief counselling.

At once she said that the Hospice Society provided such a service.  She handed me a pamphlet with a list of all the services they provide.  I was surprised to see that these included bereavement walks, as well as grief counselling individually or in groups.

The best part?  It was all free!

For caregivers the hospice societies offer many services including counselling for both the family and the patient.  They also act as a resource centre offering information about services they and others provide, including respite care, one on one support and palliative care.

So if you’re looking for any of these services just Google your community hospice society or head on out to your local hospice thrift shop.

Once I found the hospice services, I no longer felt alone in my grief.  And I’ve found it easier to situate myself in my new reality.

mf

 

 

 

 

 

 

Alzheimer’s Reading List

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.

Yours truly,

Margaret Jean.

Alzheimer’s: Poetic Response

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:

stunning, sensuous.

deliciously sexy on anyone  capable

of flirtation and desire…

does progranulin or lack of it affect

sexual behaviour?

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.

ii

frontotemporal dementia

frontal portal into the brain:

sensors removed, wires crossed.

boundaries demolished.

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.

Margaret Jean.

Grief: The Natural Course

 

I have come to learn the hard way that grief must run its natural course.

Kind of reminds me of a river I once knew, a mountain fed stream called the Salmon River that runs through Williams Park in Langley, B.C.  One year when heavy rains came, the river flooded, washing out bridges and banks, uprooting small willows and bushes that stood along the water’s edge.

The engineers at the park’s department set about rerouting the creek to minimize the damage the next time it flooded.  The idea was to redirect the path of the tumultuous waters so that even in extreme conditions, the force of the current would be less hazardous to its environment.  To this end, wire cages called Gabions filled with rock were installed along the river bank to change the course of the river.

Several weeks after the project was completed, a downpour came, lasting several days.  Agents of the parks board came to see the effects of their efforts.  As caretakers we already knew the result: the raging river had not only done just as much damage as before; it had also dislodged the Gabions in order to resume its natural course.

Like the Parks’ engineers I thought by pouring my overwhelming emotion into a new relationship, I could reroute the emotions of my grief.  I could get on with my life at a much earlier time than predicted.  I could avoid all the pain and loneliness of grieving.

But what I learned was that at the first sign of issues and challenges in the new relationship, I was easily derailed.  My judgement was almost non-existent.  I missed many warning signs that this person was not suitable for me;  Not because he was a bad person, but because I had just grasped at what my grandmother used to describe as “any port in a storm”.

It was a painful lesson.  Painful for me and for the other person as well.

Be grounded in your grief.  It’s a natural process. Don’t fear or shun it.  With God’s help will you make it through.

To learn more about Williams Park, go to: http://www.tourism-langley.ca/williams-park/

 

This Caregiver’s Journal began in August of 2014. Although the first blog article was actually written on New Year’s Day, 2015, the rest are in chronological order from August 5th, 2014. What is written here has gone before.