A daughter’s dedication | ParaMed family advisor Phyllis’s journey as an Alzheimer’s caregiver for her mother Joy
Throughout her life, Joy was involved in different organizations, adored meeting new people, and spending time with her friends.
“My mom was a true social butterfly,” remembers her daughter, Phyllis, who is a member of ParaMed’s Patient and Family Advisory Council (PFAC).
After many years as a stay-at-home mom, Joy decided to return to work and picked up two jobs. She worked in the jewelry department at a store in Toronto, and she had her own business as a florist.
“Mom’s flower shop was her creative outlet, and it was where she really shined,” says Phyllis. “She was always so proud of her work”.
Receiving the diagnosis
In late 2010, Phyllis and her family noticed some unusual changes in Joy’s typically out-going nature.
Instead of being social and meeting with friends, Joy would decline invitations to spend time with them. She became more forgetful. After her husband passed away, she stopped sleeping in her bed and would prefer to sleep on the couch.
The family reached out to health-care professionals. Joy was diagnosed with Alzheimer’s in 2011.
“When I realized what was going on, and we got the diagnosis, I knew we needed to stay together,” says Phyllis. “Her doctor told me she shouldn’t be alone, and so my husband and I moved from America, where we were living at the time, to be with her.”
Caregiving experience and advice
While Phyllis was Joy’s primary caregiver, the family also received support from ParaMed community caregivers several times a week.
“The ParaMed Personal Support Workers were phenomenal with mom,” says Phyllis. “They taught me how to better meet her care needs. We worked together as a team. ParaMed made a huge difference.”
Phyllis later joined ParaMed’s PFAC to share her experiences and insights as a caregiver and help apply them to the future of home health care. She says compassionate and personalized care for people living with Alzheimer’s disease or dementia is essential to patients and their families throughout their health-care journeys.
When asked what advice she has for other caregivers of loved ones with dementia, Phyllis recommends approaching conversations with patience, and although it’s difficult, meeting your loved one right where they are. “When the person with dementia is talking about something that is not factual or real, it is best to go along with their story instead of harshly correcting them.”
As Joy’s dementia progressed, Phyllis observed her mom reverting to her flower shop days as Joy would arrange tissues into bouquets.
“She always wanted to make sure the ‘orders’ were delivered on time and that her ‘clients’ were happy,” smiles Phyllis. “Instead of correcting her, I would always go along with it. It kept her happy and in good spirits.”
Although being a caregiver had its challenging moments, Phyllis says she treasures the beautiful moments she experienced.
“Mom would sometimes grab my hand, look into my eyes and tell me how much she loved me,” explains Phyllis. “Those moments, though few and far in between, still mean everything to me.”
To learn more about Alzheimer’s Awareness Month, please visit the Alzheimer Society of Canada’s website here.