When Richmond Hill resident Bruce Rhodes steps out the door Saturday, May 29 to participate in the virtual IG Wealth Management Walk for Alzheimer’s, one of the 17,000 steps he will take is in memory of his wife Liz, who passed away in 2019 after a nine-year battle with young-onset dementia.
Liz Maynes was 61.
Liz was the “smart cookie” in the family, said Bruce, who was Mr. Mom to their son David, while Liz was an associate professor of corporate finance at York University's Schulich School of Business. Liz taught there for 27 years.
She also co-authored five editions of a finance textbook during her career.
Bruce remembers Liz had signed a contract with the textbook publisher when she was no longer capable of writing. Bruce reached out to the editor to say that Liz could not honour the contract.
“They agreed to take Liz off the project, but we didn’t tell her; she continued to work on the book, which gave her a sense of purpose.”
Liz also conducted research before she became sick.
Liz, an avid scrapbooker, gardener and traveler, started showing signs of dementia in late 2010.
The family was in Europe on vacation, about to cross a quiet street when Liz became too scared to cross, worried about cars hitting them.
“Unwarranted fears,” was one of the first signs, Bruce said.
David said he remembers his mom asking random people in Berlin if they were from Canada, which didn’t make sense to them.
“I also remember on that trip that I found it easier and more engaging to talk with my dad than to carry a conversation with her,” David said.
By 2012, Liz had trouble communicating. She would cry and tell her husband she couldn’t remember the words.
“She had to look up the meanings of them. It was heartbreaking.”
Liz was aware of her decline, telling people, “I am Liz and I have a broken brain.”
Liz was diagnosed in April 2013 with behaviour-variant frontotemporal dementia (FTD), where nerve cells in the frontal and temporal lobes shrink, causing behavioural, personality, language and movement changes.
The family took car trips, but Liz was having difficulty understanding reality. While watching a wild west shootout reenactment in South Dakota, Bruce said, Liz grabbed David, pulling him to safety because she believed the shootout was real and people were trying to kill each other.
Their last family trip came in 2013, during which Liz behaved like “an uninhibited, uncontrollable six year old.”
In addition to loss of words, Liz would use inappropriate language, and touch people, including babies, on the subway. She developed poor judgement and began binge eating coconut oil and chocolate. Bruce had to hide her medication, and when Liz deliberately drove the wrong way on a one-way street, Bruce took her keys.
“I paid for that decision. Liz yelled at me for days, and kicked and bit me.”
For a brief period, Liz attended the Alzheimer Society of York Region’s (AS York) Thornhill DAY program. Many mornings she would sit with her arms crossed and tell Bruce she wasn’t going to go. But once there, she was happy to be with other people, participating in the music and dance. She often didn’t want to leave, asking Bruce why he was there when he came to pick her up.
Bruce also participated in a young-onset caregiver support group, which he still attends.
“Over the years I benefited hugely from answers and support. My role is now different. I counsel people if they want it, give support.”
Bruce cared for Liz at home until late 2015, and at that point he was sleep-deprived, often feeling confused and dropping things.
“It was a textbook case of caregiver burnout. It took me months to recover.”
Liz was often up throughout the night. Bruce recalled one night, at 2 a.m., when Liz threatened to break a window and jump out if he didn’t let her take Nikki, the family’s golden retriever, out for a walk. In desperation, Bruce called the police, who sent two officers from their mental health unit. The female officer, Bruce said, graciously offered to accompany Liz as the two of them walked Nikki in the pouring rain. When they returned at 3 a.m., Liz demanded her breakfast and coffee.
On Nov. 15, 2015, Liz was placed in long-term care, where Bruce visited her every two or three days, and daily toward the end of her life.
Liz died on May 6, 2019, five weeks shy of the couple’s 25th wedding anniversary. The coroner ruled her death accidental, precipitated by a broken hip (she leapt onto her bed and didn’t land properly). In her final days, Bruce said, Liz couldn’t chew or swallow, and eventually starved to death, a common outcome for people living with dementia.
For David, his entire high school and university career was shadowed by his mom’s illness.
“A lot of the time, I would avoid being in public situations where she was behaving strangely, which meant a lot of our time was spent at home as her disease progressed.” He said he rarely had friends come over and when he did, it was people he knew before his mom was diagnosed.
“Since my mom and I were rapidly changing at the same time, in the early stages it felt confusing to me as to why she couldn't explain herself and why she behaved differently than my dad or I expected. When she received her diagnosis, and that information was given to me, it felt like an 'aha moment' to explain all of her behaviour. The broader implications of her decline, and the emotional realization of that, came more slowly as I got older and really understood what was happening.”
David said he was close to both his mom and dad, sharing their interest in sports and music. He said he is thankful he has powerful memories of his mom before she got sick – reading Harry Potter series (Liz reading the first book to her son when he was too young to get through it on his own) as well as amusement parks – “visiting Canada’s Wonderland every summer and taking a trip with just the two of us to Disney World.”
A strong family unit, David said he would talk to his dad about his mom’s illness and his friends as her disease progressed.
The month leading up to his mom’s passing was an emotional time.
“Before then, I generally went months between feeling intense emotions about my mom's illness. In the month before she died, all the emotions were much closer to the surface, and became overwhelming much more frequently. Now that we're close to two years after her passing, I'm more easily able to reflect on her and her illness without feeling overwhelmed.”
Bruce slid into clinical depression after Liz passed, but began to feel more like himself in the fall. While COVID has postponed the things he usually enjoys – hiking trips and swimming – he is currently walking, averaging about 11,000 steps a day.
“Walking is good for the body and soul.”
Looking back at this time, Bruce has some advice: get your wills and powers of attorney done as soon as possible, regardless of whether you are married. And second: “Try to live in reality and avoid denial. Liz was terminally ill, and I was never in denial about it. Denial makes your life more difficult.”
Finally, when making decisions, don’t shy away from the difficult ones. Decide what’s best for the person you love, yourself and your family.
Bruce and David are this year’s Honorary Family for the IG Wealth Management Walk for Alzheimer’s May 29.
Bruce will be walking 17,000 steps, one step for each York Region resident impacted by dementia (#AlzStepChallenge).
The Alzheimer Society of York Region invites you to register for the #IGWalkforAlz at https://bit.ly/ASYorkWalk2021RH and https://bit.ly/ASYorkWalk2021G and begin to raise money for family, friends and neighbours impacted by these fatal diseases (#OurConnectionsMatter). Please share what you are doing on social media and tag AS York. Pictures can be sent to Lisa Day, communications and fund development coordinator, at [email protected]
For more information, visit https://alzheimer.ca/york/en/IGWalkforAlz2021
“It’s important to give money to the Alzheimer Society of York Region,” Bruce said. “Sadly, so many people, so many families are touched by dementia. Unfortunately, it’s a disease that casts a very wide net.”
To donate to Bruce’s walk, visit bit.ly/BRhodesWalk
Click here to learn more about the IG Wealth Management Walk for Alzheimer's and register today.