The caregiver’s daughter

Helen Morris with grandson Michael
Helen Morris with grandson Michael

By Jean Morris

On her 62nd birthday my mother Helen Morris learned that my father had irreversible bowel cancer and that he may have a year to live. It was during the remaining 50 weeks of my father’s life that we began to notice the deterioration in my mother’s health.

My mom had grown up during the depression and her parents had to send their three girls into institutional care as they could not afford to feed and house them. Even in the face of adversity in childhood, my mother shone as a girl and then as a young woman. She married her high school sweetheart Alan Morris, and they had three children.

My mother shared a deep love for my grandmother, her mother-in-law Jean. As a former nurse, she took on the role of caregiver for Jean, who lived with us during my high school years. Although I did not share her caregiving responsibilities directly, these years taught me that teen troubles paled in comparison to the real challenges that life could present.

The weeks and months of my father’s illness passed by, presenting new challenges. During my last visit with my father, he expressed his fears about my mother’s deterioration. I tried to reassure him that her diminishing health was due to her severe depression as a result of his illness. Dad was doubtful. I assured him that if I was wrong, I would, of course, take care of her. I am so glad that these words, which could have been presumed, were actually spoken. His sense of relief still amazes me when I think of that departing vow.

My mother, who throughout her life was fiercely independent and a quiet crusader in whatever she set her mind to, was indeed ill. Had help been offered she would be disinclined to accept the helping hand. It was now 1988 and my mother had been a widow for a year. In the meekest voice by long distance phone call from Hamilton, Ontario, she asked if there were any houses near to where my sister and I lived in Halifax. It was not until she moved in with us that the extent of her illness became apparent.

We never received a clear diagnosis of my mother’s illness, nor were we consistently informed about what to expect as her condition worsened. Looking back, I believe she had “multiple system atrophy”* an atypical parkinsonism. My mother’s usual militarily erect stature became bent and shuffling. She had told her own sister, her best friend in the world: “Don’t expect me to have a conversation with you,” when she journeyed a considerable distance to visit. Her ability to speak declined to the point where only passages committed to long-term memory could be repeated. She could sing Happy Birthday, but not answer a question about whether she was warm or cold. And one day, my mother could not speak at all.

How many times I wished I had asked her simple things before this chronic disease took her hostage: Do you like to sleep on your left side or your right side? How do you like your pillow? Which flavour of tea do you prefer? I wish I had made collections of her favourite music and read to her and watched TV with her, when I still could determine what those interests might have been. I was 17 when I left home for university, and I had lived away for longer than I had lived with my mom.

We had caregivers help with my mother’s care, as both my sister and I juggled professional careers.  One of the caregivers in our “staff family,” was a crusader for getting help for my mother, especially massage therapy and physiotherapy for her increasing rigidity. How Mom struggled. There seemed to be nothing available in the early 1990s. As a team we tried to advance the rights of the disabled and access resources on her behalf.

The later stages of the disease were perhaps the most difficult for Mom to endure. Her only relaxation came during a warm bath or when sleeping. My sister and I would take turns lying down with her in the evenings, arms wrapped around her. If my mother woke up when I moved, then her sweating would begin again and the bed would be drenched within hours. It was like turning a hose on in the bed, the result was so drastic. It is these shortfalls in our caregiving that still live with me.

Although I had the experience of living with my ailing grandmother and my mother cared for my father through his long illness, we never fully discussed end-of-life issues. At that time, the medical community did not communicate with us about our options and I was not aware of any organization offering assistance to families to help us make such decisions. Today, end-of-life care and decision-making is discussed much more openly. I also know now that Parkinson Canada provides its clients with the information they need to make their own well-informed decisions at every stage of the disease.

It was ultimately the inability to swallow that led to my mother’s death. I am sure my mother understood what was said, even though she could not speak. I told my mom that if I could not feed her, we would have to have a feeding tube inserted and probably find a nursing home for her. The look on her face stays with me today…it was not fear or upset, it was determination and relief. That look stays with me now.

The effects of chronic brain disease linger.  Mom’s only grandson, my son Michael, was two years old when she passed away. My boy is now 24. It took me this long to write this article and launch my plans to donate shares of stock to Parkinson Canada, with the help of my financial advisor. I cannot bring my mother back to life. Donating shares, passed from my father, to my mother and then to me as an heir, is the closest thing I can think of to honour my mother, when all other efforts are beyond reach.

Editor’s notes:

*  Multiple system atrophy (MSA) is an atypical parkinsonism. The term MSA was coined in 1996 to describe several disorders including Shy-Drager syndrome, olivopontocerebellar atrophy, and striatonigral degeneration. To find out more about atypical parkinsonisms, visit our website.

The Canadian Guidelines on Parkinson’s Disease also contains several recommendations on communications, including two concerning palliative and end-of-life conversations:
“C7 Palliative care needs of people with PD should be considered throughout all phases of the disease.
“C8 People with PD and their caregivers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals.”

For more information about atypical parkinsonisms, and any other information about living with Parkinson’s, contact our Information and Referral Centre at 1-800-565-3000 or info@parkinson.ca.

Diagnosing rare forms of Parkinson’s disease

Sarah Coakeley
Sarah Coakeley

For most people with a classic form of Parkinson’s disease, medication helps control their symptoms.  At least two other progressive brain disorders have similar symptoms, though, and the same medication isn’t as effective – but researchers can’t yet distinguish between the diseases.

At the University of Toronto and the Centre for Mental Health and Addiction, neuroscientist Sarah Coakeley is using imaging technology to develop a diagnostic test for progressive supranuclear palsy, or PSP. Coakley has been awarded a $30,000, two-year, Porridge for Parkinson’s (Toronto) graduate student award from the Parkinson Canada Research Program to fund her investigation.

PSP is one of the rare disorders that affects movement and may initially appear to be Parkinson’s. People with PSP deteriorate more rapidly than people with Parkinson’s, however, and dopamine replacement therapy doesn’t control their symptoms for long.

Coakeley, a Master’s student, uses Positron Imaging Technology (PET) to scan the brains of people with Parkinson’s disease, people whose brains are healthy, and people who have already been diagnosed with either PSP or multiple system atrophy, another rare disorder.  The people participating in the study are injected with a special radioactive dye that binds to Tau, a protein in the brain that clumps up in brain cells of people with these neurodegenerative diseases.

Coakeley hopes to find a correlation between how much dye binds to Tau in the brains of the people in the different groups in her study. If there are more clumps of the protein in the brains of people with progressive supranuclear palsy, as she suspects, the imaging test would help to diagnose that disease.

“It will give them a more accurate prognosis, so they are prepared for this rapid disease progression,” she says.

Coakeley was captivated by the power of medical imaging when she volunteered as a student at an MRI clinic. Now, she’s fascinated by the stories of the people she works with.

“I didn’t realize until I actually started seeing patients in my project how important this was, and how willing these people are to do research that’s not going to benefit them, but could possibly benefit people in the future,” Coakeley says. “That’s what really motivates me,” she says.

Visit our website to read about other researchers and their projects, funded by Parkinson Canada Research Program.

Do something grand this Grandparents’ Day

Cindy and Garry Shyminsky with granddaughter Penelope at Parkinson SuperWalk in 2015.
Cindy and Garry Shyminsky with granddaughter Penelope at Parkinson SuperWalk in 2015.

September 11, 2016 is National Grandparents’ Day and Parkinson Canada is inviting families to honour their grandparents by signing up today for Parkinson SuperWalk, taking place in communities across Canada on September 10 and 11.

“You and your family can become everyday heroes inspiring hope for those living with Parkinson’s,” says Jon Collins, Associate Director, Events & Partnerships, Parkinson Canada. “It’s a fun way for family members of all ages to spend time together in a relaxed setting, while raising funds and awareness for a good cause.”

Grandparents Cindy and Garry Shyminsky agree. They’ve taken part in the Parkinson SuperWalk in Sudbury, Ontario, for 15 years, beginning a few years after Garry was diagnosed with Parkinson’s at age 40. This year Cindy and Garry will be joined by two of their sons along with their families, which includes three grandchildren.  Garry’s mom Carol, as well as good friends Pam and Chris, will again walk with them in Sudbury. The local Parkinson Canada support group hosts the walk.

Last year, their granddaughter Penelope, then 6, really enjoyed becoming their “Everyday Hero,” wearing a cape and mask. “It’s just awesome to have family and friends take part in SuperWalk with us,”  says Cindy. “It’s so important to know we have their love and support on our Parkinson’s journey, and I know it will be even more important as the disease progresses.”

Every hour, of every day, another Canadian hears the words: “You have Parkinson’s disease.” For people newly diagnosed, Parkinson SuperWalk is a great opportunity to meet others living with the disease and their families and to begin to build a support group. It’s a very hopeful event with people living with the disease participating. Funds raised are invested in communities across Canada to provide support services, education and advocacy for people affected by Parkinson’s and for Parkinson’s research into improving treatment and finding a cure.

Garry’s mother Carol is already circulating her pledge form around town. Cindy registers online and sends out the link to her personal page through her social media accounts on Facebook and Twitter. “This makes it easy for family and friends, especially those farther away, to support Parkinson SuperWalk and Parkinson Canada, and at the same time show their support for both Garry and I,” she says.

Your family can join Garry and Cindy and their extended family and become everyday heroes, inspiring hope for Canadians living with Parkinson’s. Make your grandparents proud and register today for a fun, family outing with a special purpose. Contact Parkinson Canada at 1-800-565-3000 for details about SuperWalk locations near you.