Kathleen F. of Guelph, Ontario, was 20 when she learned that her mother, Moira, had early onset Alzheimer’s disease. Moira was just 51 at the time.
Her symptoms were subtle at first. There were instances of forgetfulness, but they were explained away as the by-products of a hectic lifestyle.
But then Moira began to forget the day of week. She would get lost in familiar places. The decline in memory, thinking and reasoning grew serious enough that she retired from her job as a high school math teacher.
For Kathleen, her mom’s diagnosis was a shock given her relatively young age. Wasn’t this an old person’s disease? Kathleen knew little about Alzheimer’s. That all changed quickly – it had to.
Kathleen now shares the responsibilities of caregiving with her dad. Her younger siblings help whenever they can.
Caregiving can be a lonely, anxious and physically gruelling experience.
Caring for someone with a life-altering disease is an enormous responsibility, and one not always appreciated by society. It can be a lonely, anxious and physically gruelling experience.
Caregiving is even more emotionally exhausting when a loved one is concerned. To see a person on whom you depended all your life progressively get dependent on you can be heartbreaking.
It’s not uncommon for caretakers to put their lives on-hold as they deal with the enormous demands placed upon them.
Kathleen and her dad help Moira to get to a day program through an accessible transportation service every morning, as she is unable to get into a car independently. Numerous doctors’ appointments are routine. There are also the challenges of navigating a sometimes complex healthcare system.
In short, when you’re a caregiver, ‘days off’ are few and far between.
“You have to kind of be in the moment…be very present because it is sad and if you think about it too much, it’s very difficult.”
While daughter and father receive help from support workers, it is for only two hours a day. Despite all of these demands, Kathleen manages to work full-time as a registered kinesiologist, while taking online classes through the University of Guelph.
Kathleen’s story is featured in a TVO documentary.
Much Too Young is a documentary produced by TVO – a public educational media organization in Ontario. It was first aired on World Alzheimer’s Day last Fall. It follows Kathleen, and three other young people as they meet the challenges of caring for loved ones living with Alzheimer’s. Each one, in their own way, put aside their own life and future plans to provide the necessary care.
Kathleen participated in the documentary to help other young caretakers. “At that time my mom was diagnosed, there were not a lot of resources for young caretakers. I felt really isolated.”
“Hopefully, the film will help others understand that it is not just about memory loss. The disease affects people so differently.”
A MedicAlert Safely Home subscriber since 2012.
At 57, Moira no longer recognizes Kathleen, her siblings or her husband, although she does recognize them as important people that love her.
Moira has been a MedicAlert Safely Home subscriber since 2012. It’s a nation-wide program created in partnership with the Alzheimer Society of Canada.
While MedicAlert Safely Home was designed specifically with the safety of the subscribers in mind, caregivers have benefited, as well.
Knowing that emergency responders will quickly recognize her mother’s condition has been a huge source of comfort for Kathleen. “We ensure that she is wearing her ID every day. It’s extra level of protection for my mom.”
“I would recommend MedicAlert Safely Home to anyone who cares and loves someone with a life-threatening disease. As a caregiver, you can’t do everything on your own. You need others, a network. In a way, I look at the MedicAlert as part of my caregiver network.”
For more information on MedicAlert Safely Home, visit www.medicalert.ca/safely-home or call 1-866-668-1507.
Thank you Kathleen for sharing your MedicAlert story with us! Are you a MedicAlert subscriber or a caregiver and would like to share your story? We would love to hear from you! Share your story at medicalert.ca/community.