Cheryl and Gerry's story - World Alzheimer's Day

Love, respect, compassion – you can hear it when speaking with Cheryl Bahen and you can see it when she is with her husband of 47 years, Gerry, who lives with symptoms of both Alzheimer's and Parkinson's disease.

Pre-COVID-19, Gerry attended the Alzheimer Society of York Region's (AS York) Aurora DAY program. It was during that time that Cheryl could attend appointments, run errands or simply, grab a coffee. Then the pandemic hit, and Cheryl, who lives in Holland Landing, started providing around-the-clock care to Gerry, who had several falls, the last of which sent him to the hospital where he stayed until being transferred to the Reactivation Care Centre in the former Humber hospital in Toronto.

“This time with Gerry in the hospital, I miss him, but it's relaxing.” Cheryl has time to just be. “You don't know the strain you are under until it is gone. When Gerry is home, I do everything myself. A year ago, he had a fall and I could no longer leave him by himself. Now I can catch my breath. I can catch up with friends...and relax because I can't do that when Gerry is home.”

Gerry has been living with the symptoms of Alzheimer's and Parkinson's for about 10 years. His symptoms are a “direct result of brain trauma he suffered in a car accident in 1970s.”

Gerry was driving in Richmond Hill when he was cut off by a driver turning left in front of him. He swerved to avoid the car, hitting a hydro pole, which flattened the car he was in. He had emergency brain surgery to relieve the pressure on his brain.

Other than having no memory of the day of the accident, there didn't seem to be any other problems, mentally. He did, however, have seizures, which came on unexpectedly and once while he was driving, causing him to lose control of the car and go into the ditch. He then lost his license.

It wasn't all bad, however, because a year later he was taking the GO train from work to his home in Oak Ridges when he saw Cheryl.

“He says it was me or the old lady sitting nearby and he choose me,” Cheryl said with a laugh. She also said Gerry knew her uncle, otherwise she wouldn't have spoken to the stranger on the train.

The couple married on Oct. 13, 1973. Gerry was a draftsman by trade, working for the ministry of transportation designing the signs you see on the highway, while Cheryl was an analysis for Rogers. Gerry retired from the government at 55, becoming the head of security at the Markham Civic Centre before retiring completely in 2000.

At the time the couple, who had lived in Newmarket most of their married life, lived in Pefferlaw in northern York Region, and Gerry met up with friends for coffee every morning, did woodworking and spent time with his family, including his only child, their son Chris, his wife Karry and their child Xander.

About 10 years ago, Cheryl began noticing strange things happening to her husband. One day, Cheryl went to the hairdressers while Gerry ran some errands. When he came back to get her he was really quiet, not like the outgoing, talkative man he was. “He said 'You drive home.' I asked why and he said 'I was out and I forgot where I was and I didn't recognize anything'.”

Cheryl said episodes like this started happening – one time it was fine, the next something weird happened. “It was like a light switch going on and off.” Gerry was diagnosed with a vascular condition and presents with symptoms of both Alzheimer's disease and Parkinson's disease.

For example, he gets hallucinations common with dementia (but in “his case, they don't scare him.” Cheryl said there is a light in their bedroom and Gerry believes there are big bugs moving around up there.

“He describes them in perfect details, they move around and he is surprised” they are there), but has the vertigo associated with Parkinson's. “He is dizzy all the time. His stance is rigid...He sits there and starts to go left.”

And while the car accident was likely the causes of his vascular disease, Cheryl also said the continuing trauma Gerry suffered as the result of the accident likely played a part in it as well.

Cheryl said Gerry underwent a number of surgeries due to the accident such as scar tissue buildup on his trachea, knee replacements, shoulder surgery and then cancer and a heart attack on top of it all. “All those surgeries and trauma contributed to what he is dealing with,” Cheryl said.

“But he never complained. He just carried on. It was just the way it was.” Things carried on. Gerry stopped driving after an incident where he lost all strength in his upper body and he wasn't able to move. It went away, but the family decided it was better if he didn't drive because if something happened, he wouldn't be able to live with himself.

Cheryl's doctor was able to arrange for a personal support workers (PSW) to come in to help because while the progression of his disease is slow, he no longer can be left alone. He needs help showering and getting dressed. He doesn't talk much any more and he is weak and now unable to get up without assistance and requires a wheelchair.

Yet, his personality remains. “He is easy going, that shows up, He is not aggressive or difficult.”

In 2016, Cheryl learned about AS York and connected with social worker, Angela Owen-Johnston, who suggested Gerry attend the DAY program, which he loved.

“He really enjoyed it. He kept asking when he was going back.” Cheryl said Gerry loved the people and the entertainment, particularly Fridays when musician Ryan Ainsworth played his guitar and sang. (The DAY program) gave him some kind of routine. It gave me a breathing room...I knew I had a few hours.”

Gerry went to the DAY program for just more than a year when, in March, everything changed. The pandemic forced the closure of the DAY program and Cheryl, worried about the number of houses PSW went into, cancelled the service and took care of Gerry herself, which she was doing until Gerry's most recent fall, which now sees him at the rehab centre.

“Caregivers need support,” Cheryl said. Not just physical support, but mental support, too. “They need to be able to pick up the phone and talk to someone.”

She also said many caregivers don't know where to go to get the help and support they need. “If more people talked about it (Alzheimer's disease, caregiver support)” more people would know of the help available to them.

Cheryl just learned that Gerry will not be able to come home because he is now needs a wheelchair and two people to lift him, which she isn't able to do. So Jerry will stay at the rehab hospital until a bed opens up in one of the long-term care homes she has chosen for the care of her husband.

“Our journey together continues.”

World Alzheimer's Month September is World Alzheimer's Month. During World Alzheimer's Month, AS York shares stories about people impacted by Alzheimer's disease and other dementias in order to change the stigma associated with a diagnosis and to raise awareness about the people living with the disease and their caregivers.

The Alzheimer Society of York Region provides programs, services, resources and support to York Region residents impacted by dementia. While in-person DAY programs have just resumed, many programs are virtual including  a DAY programs, support groups, public education sessions and more.

If you have been impacted by dementia and would like to share your story, contact Lisa Day, communications and fund development coordinator, at [email protected] .

If you need help, please reach out to our First Link Navigator, Sara, at [email protected]

The dementia journey can be a lonely one, but it doesn't have to be. We are here to answer questions for every step of this new journey.

Follow AS York on social media:

• Facebook: alzheimersocietyyork
• Twitter: ASYork1
• Instagram: alzheimeryr
• LinkedIn: bit.ly/ASYorkLinkedIn