Honouring What was Important to Mom

In 2011 everything changed. My mom, Patti, just 64 years old, was diagnosed with Frontotemporal Dementia (FTD). So began her journey from vibrant, independent living to a retirement setting, and ultimately to a place that provided full care.  As devastating a time as this was, Mom’s family and close friends encircled and supported her through each transition accompanying her for daily walks, coffee time, singing and dancing.

Mom was a longtime resident of a small community, the place of everything she held dear—her family, her home and the business she built with her husband.  Pat was very active. She raised three busy children, helped run the business, kept an impeccable home, stayed fit, contributed to her church, and made sure to spend time with neighbours, family and good friends. And above everything, her life’s work was empowering her son Shawn who has special needs. She was also devoted to her grandchildren, and she was a huge supporter of all of their sports, music and dance activities. Outside of her beloved community, her retreat was the family cottage. As Grandma, she established a warm and cozy place where special memories were made. 

Through the journey—and even as it continues after my mom’s recent passing— for me, there has been a growing awareness of this disease called dementia which presents itself in many forms – Alzheimer’s, Parkinson’s, Lewy bodies and particularly, FTD with which my mom lived and struggled for 5 years. And many, many others suffer.

What struck me the most was the dedication, passion and compassion of the frontline caregivers in the long-term care (LTC) villages where Mom was a resident, because at the end of the day, it is the expertise and care of this frontline team that matter to a family member. These are what make the biggest impact on the residents day to day.

My mom had always taken time to take care of herself inside and out. She believed if she was strong, healthy and fit, she could give us the best of herself.  This is just one of the many lessons she taught me that I try to carry out in my own family life.

When it came to the point where she required care in a LTC facility, it became important to me to continue what was important to her. I definitely experienced challenges when it came to finding comfortable and easy-wear clothing that maintained her sense of fashion and style. At first, I looked for pieces that would make it easier for her to dress herself, but then later in her journey, for clothes that would be easy for myself and others, such as her sisters and the PSWs, to dress her in.  I found garments from other adaptive clothing companies institutional, and they were usually too large and boxy, made out of scratchy fabric and they had difficult closures.  Shopping for Mom often resulted in alterations, trying to adapt the piece myself, which was often frustrating and costly. 

I feel I am honoring my mom’s spirit and her happy soul by sharing with others the small details that could help make someone’s day, whether it is the resident or the caregiver.  For example, making it easier to change a resident’s top after lunch without it being an overwhelming, painful experience can make all the difference.  These were the little things I remember being important to my mom. And even though she was unable to express it through words, I always saw it in her eyes and contagious smile!

Contributed by Sheri B., Daughter