The Hot Chocolate and Decadent Cake Society
The day my husband received his Alzheimer’s diagnosis January 18th, 2018, confirmed what we both had suspected. Since then, Wayne never wavered in his choice for MAiD before his quality of life became painfully compromised.
I was his nurturing companion for the past three and a half years, supporting his journey towards MAiD. I fully support the right to choose a death with dignity through MAiD when a terminal condition painfully compromises the quality of life defined by each individual. In this case, I am focusing on Alzheimer’s.
Writing the memoir, The Hot Chocolate and Decadent Cake Society - Alzheimer’s and The Choice for MAiD has been one of the ways that has helped me begin the process of reconciling present and anticipatory loss through grief and mourning. It is a necessary process that opens the door to healing. In the words of Helen Keller, “The only way to the other side is through.” My memoir also emphasizes the need for emotional and spiritual nurturing.
I’d like to share our journey through excerpts from The Hot Chocolate and Decadent Society: Alzheimer’s and The Choice for MAiD - A Memoir in Poetry and Prose, a snapshot of our first year following my husband’s Alzheimer’s diagnosis.
January 2018
An appointment at the Brain Health Centre in Vancouver
confirms our suspicions. The hope that brain research
pursued with this Centre might give a way forward rapidly
dissolves.
although anticipated
Alzheimer’s diagnosis
still surreal
March 2018
The Alzheimer’s Society of BC series ‘Shaping the Journey of
Dementia’ does not meet our needs. My husband introduces
himself saying, “I have been recently diagnosed with Alzheimer’s.
When my quality of life deteriorates and before I am no longer
deemed capable of giving informed consent, I want the choice of
MAiD.”
uncomfortable silence
hanging response
not a choice for dementia
courageously lobbied
pioneers in a league of their own
right of choice Bill C-14
The message from our family physician, lawyer and Alzheimer’s
Society, suggests that dementia does not fit the criteria for MAiD.
The tourniquet of unbearable stress resulting from hearing this
message tightens.
despair and depression
soul mates conceived
when hope seems lost
April 2018
A community forum on MAiD held in Parksville the evening of
April19th provided information on the medical, legal and spiritual
aspects of MAiD. Dr. David Robertson, MAiD Lead for Vancouver
Island Health spoke on the medical perspective. His presentation
would unknowingly offer a pathway to hope.
relevant information
a beacon of light
providing direction
A call to Dr. Robertson’s office put us in contact with Rosanne
Beuthin, MAiD Intake Nurse Coordinator for Vancouver Island
Health. Rosanne compassionately informs us that, “Those with
dementia may meet the criteria for MAiD as long as they are
deemed competent of giving informed consent.” She also asks,
“Do you need the contact number for a doctor on our MAiD team?”
“Thank-you so very much. We already have the name of the
doctor we would like to contact.”
stress talons released
hope reignited
sense of control regained
May 2018 - October 2018
We have a compassionate phone conversation with the doctor
whose office we contacted. A consultation appointment is
booked to discuss my husband’s decision to explore MAiD.
an angel of compassion
how welcoming
comforting and reassuring
This consultation is the first of the appointments scheduled at four
month intervals with both our doctor and a geriatric psychiatrist.
He continues to assess my husband’s mental capacity to give
informed consent in order to advise when the window of doing so
appears to be narrowing. A member of his outreach staff also
makes home visits to help with this.
disease progression
narrowing the window of consent
creates dis-ease
Our support team is a blessing and a gift. How comforting to feel
cared for and know we are not alone on our journey. Concerns
and questions are always addressed. Feeling compassionately
listened to is so affirming.
time patiently allotted
for reassurance
compassion’s gift
The choice of MAiD as an option gives my husband a
renewed sense of control over his life. The overwhelming burden
of stress slowly lifts. Embracing life, revisiting memories and
the freedom to plan his final day enhance my husband’s right
to do it ‘His Way’
dissipated stress
channels energy
into present moment living
Yes, there are tears and sorrow. There is laughter and gratitude
for what is and what was. There also is mourning for what won’t
be. Through it all my husband’s right to choose shines into the
shadows.
sensing confusion
hearing your anxiety
tears at my heart
when the fog lifts
insight still intact
joy
not time yet
our journey together
still unfolds
Fast forward our journey to August 2021 and my husband’s
Alzheimer’s has progressed to the point where he is being assessed
so he can set a date for MAiD.
Bill C-7 has highlighted the fact that those with dementia do
have a choice for MAiD. Sadly this is something that few people
with dementia who would have made that choice were aware of.
It is well past time for individual Alzheimer’s Societies to step forward
become more inclusive by creating compassionate support workshops for
those with dementia who have indicated their choice for MAiD and also for
the nurturing companions of those who have made this choice.
I find much wisdom in the quote below.
“alone we can do so little
together
we can do so much.”
Helen Keller
Jule Briese, author of The Hot Chocolate and Decadent Cake Society – Alzheimer’s and The Choice For MAiD - A Memoir In Poetry and Prose
Briese’s book can be purchased for $15 plus postage by emailing tranquilshorescreative@gmail.com. Part of the sale proceeds will be donated to MAiDHouse.