Category Archives: Uncategorized

What Dying People Want: A Resource Book by David Kuhl

Do you work with the terminally ill? Are you making that last journey with a loved one? Has someone you love just been hit with a dreaded diagnosis? Then David Kuhl’s book could be an important read for you.

I wish I had found this book when my husband was still alive.  And I wish every doctor, caregiver and member of the terminally ill patient’s family would take the time to read it.

David Kuhl speaks honestly about his experiences and emotions as a doctor.  The book clarifies not only the needs and desires of a dying person, but also the attitudes and challenges of the medical professional involved in diagnosis and treatment.

I found What Dying People Want: Practical Wisdom for the End of Life in the White Rock Hospice Library.  Leafing through the book, I realised that much of Kuhl’s research had been done at St. Paul’s, a Vancouver BC hospital where my husband was treated in the cardiology department over a period of twenty years.

I’m finding What Dying People Want:  Practical Wisdom for the End of Life an informative and compassionate read.  For those who suddenly find themselves face to face with their own or their loved one’s mortality, it’s a read I highly recommend.

Alzheimer’s: A New Therapy?

En route to Phoenix this week, I discovered an article on ground-breaking research by Dr. Paul Alan Cox into what scientists call the “tangle diseases”.

Alzheimer’s, ALS or Lou Gehrig’s disease, Parkinson’s, Lewy’s Dimentia, Pick’s disease and supranuclear palsy are all caused by a build-up of placque and misfolding of the proteins in nerve cells.

Cox, who has studied this affect in several countries over a number of years has established research that may suggest that an amino acid known as L-serine could prevent or slow the onset of tangle diseases.

Cox believes another amino acid called BMAA, when consumed in massive amounts becomes a toxin, replacing L-serine.  The absence of L-serine then allows the breakdown of proteins, causing the build up of placque and killing nerve cells.

He found one society which was free of tangle diseases.

“Centenarians walked as gracefully as ballet dancers,” Cox reported.  He found their diet was rich in seaweed and tofu, two foods known to contain high levels of L-serine.

L-serine is available as a powder through Amazon.

L-serine is also a natural component of tofu, seaweed, sweet potatoes, and author Jay Heinrichs adds, “even bacon”.

Currently the FDA is looking into the sale of L-serine as a supplement.

The information in this article comes from the article “The Storied Man” by Jay Heinrichs in Southwest, the Magazine. September 2016 edition.

Caregiving is a Love Song

This weekend past, I attended a funeral.  The woman, a kind and caring person, an educator, mother and grandmother, was honoured by her family, who gathered around to mourn her passing.

Friends came from far and near; people who had immigrated with her, others who taught in the same schools or baby sat her children while she worked.  This lovely woman was involved in the work of her community and temple and left a fascinating legacy for her children and grandchildren.

Harbajahn had three daughters and they took turns month after month, going to her home to care for her as her Alzheimer’s increasingly took its toll.  They brought the grandchildren, too. The youngsters played together, visiting with their grandmother and learning, by osmosis, the process of caring for someone you deeply love.

When I say care giving is a love song, I don’t mean to diminish all the practical and difficult challenges faced on a daily basis in looking after a person.  But I do mean to celebrate the loving kindness, the tenderness and patience with which these offices are carried out.

Studies have shown that what is important to a dying person is being touched, held, loved.  Having someone with them.  And that’s what this family did for their mother; what all care givers offer to their patients.  A companion on the journey.

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.

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.

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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.