“Who lives here?” Tom Cooper asked his wife, Jean, while sitting on the couch in their Newmarket home.
“At times, Tom is aware of what's going on, but at other times, not so much,” said Jean, who has seen a noticeable difference over the course of several months in her husband who is living with young-onset dementia.
“Tom is more incontinent, needs assistance with all things, he has hallucinations, confusion, is sundowning (restlessness and agitation, usually in the late afternoon or early evening), has dull eyes and a note of sadness,” Jean said.
What hasn’t changed is Tom’s empathy, his caring nature that has been around since the pair met through mutual friends 37 years ago.
“He worries about me, his father-in-law and other family members. He even worries about Mary (a program worker at the Aurora DAY centre where Tom attends), stating she works too hard and needs a vacation in Cuba,” Jean laughed.
“Tom wishes he could help me more, but does not get frustrated. I explain often that no matter what, we are a team and will manage and that he is still a big help.”
Tom, 65, was diagnosed with young-onset dementia about five years ago. He no longer works, drives or does the things he used to love, such as building model cars. He attends the DAY program where he enjoys the music, dancing and food.
“I like it there,” Tom said.
Jean, who calls the DAY program a godsend because it gives her respite and provides Tom with the socialization opportunity important to those living with dementia.
“He comes home happy, fed and excited and tells me about his day. He is beaming when he gets home. He loves all the people.”
Jean and Tom have been married for more than 25 years. Like all marriages, theirs had ups and downs, including their inability to have children and Jean and Tom’s workplace accidents. Tom’s accident resulted in a brain injury, among other things.
Then, five years ago, Tom slipped on ice at their apartment, spraining his back. He also was acting strange and his boss called Jean, telling her he wasn’t doing well at work.
Then “he came home early one day and he didn’t know why, he just did,” Jean said.
A doctor’s visit offered a diagnosis of young-onset dementia. Jean said she began counselling to mourn the loss of Tom, then realized she was missing time to spend with him. She also connected with the Alzheimer Society of York Region (AS York) and social worker Angela Owen-Johnston, who provides advice and information to navigate the health care system.
“My advice to people starting this journey is they are going to meet a lot of great people with great advice. Listen to them and take their advice. They are there to help.”
Jean said she would also recommend people connect with AS York as soon as possible.
AS York “is this band of beautiful and dedicated workers who are going to be your lifesaver ring. This is a journey that requires the expertise of many to provide ongoing guidance.”
Jean said people need to put pressure on politicians to do more to help people diagnosed by the disease, which is about 15,000 people in York Region alone. With every person diagnosed, another 10 to 12 people are directly impacted, which means about 180,000 people could be reaching out for support and help.
“It is important to raise awareness about dementia as we are all on the edge of a pandemic. Baby boomers, beware. This disease is affecting younger and younger people, not just the very aged,” Jean said.
Jean said Canadians must fight to ensure there are good long-term care facilities, available to families in a timely manner; frontline workers receive a better wage; and there is more funding for DAY programming, like that offered by AS York.
And if she could give her past self a piece of advice it would be this: “Hug him a little tighter and a little longer.”
Learn more about AS York by visiting https://alzheimer.ca/en/york
Lisa Day is the communications and fund development coordinator at AS York.
