Beth Haas, Behavioural Support Worker for the Alzheimer Society of Oxford, shares her connection to Alzheimer’s disease.

Can you share what your personal connection to Alzheimer’s disease has been?

First it was my grandmother who had Alzheimer’s disease. It was still called senility in the 1970s.   At an early age,  I had to travel every other weekend to support her as she struggled to remain in the farmhouse where she had spent all of her married life.

And then, years later, Alzheimer’s struck again.  My mother began to experience memory loss. I witnessed  her  efforts to appear normal , but she recognized warning signs she had seen in her mother. I was 24 when she was diagnosed with Alzheimer’s disease.

And still the diagnoses keep coming. My mother-in-law was next, and this occurred  while caring for my father-in-law, who had vascular dementia. For a number of years, my husband and I juggled living far away with caregiving.

Were there initial warning signs that lead you to believe your mother’s health was changing?

With my mother, it was a year and a half before she was diagnosed.  She had short term memory issues but it went beyond that.  She seemed more fragile, unsure of herself, handed me her car keys to drive if we went out together, deferred to my father more often and became weepy. Her handwriting became shaky, spidery.

My siblings and I thought it was depression, specifically empty nest syndrome. She had no children at home for the first time in almost 40 years. She defined herself as a mother and she excelled at it.

Years later, while tidying my parents’ bedroom, I came across a letter that she had written to a talk show host after an episode on dementia. In her letter, she described noticing signs of memory loss in herself at least 3 years before any of us recognized changes. This seems to be supported in emerging research today: subjective cognitive impairment not yet detected  with today’s cognitive testing often develops into dementia.  What was heartbreaking was how she was so successful in hiding this from us for so long.

There are 10 warning signs of Alzheimer’s disease.  People may think these symptoms are a part of normal aging but they aren’t. Learn the signs here.

What support, if any, did you access?

The Alzheimer Society was brand new in the community where I lived. I attended one of their first support groups and it became a lifeline. I learned what we were experiencing at home was not unusual and, more importantly, that I was not alone.  They provided strategies, contact information for other community resources,  and an outline of what lay ahead. I inhaled it all and took it home to my dad and siblings.

Out of this came fuller understanding, more patience and tolerance for Mom and greater support for my dad who was the primary caregiver.

What propelled you to work in this field?

My original goal in university was to work in gerontology but then life intervened. My husband found employment in Europe. By then, my grief around my mother was too much to work in this field. Fifteen years after later when I was back in Canada, I was offered a position with the Alzheimer Society of Oxford.

My experiences help me understand what family members live with. It spurs me to think that I am contributing even in a small way, giving back to make the life of someone else’s mom a bit better.  That may sound clichéd, but my mother’s life guides me in most of what I do at work.

 Learn more about the 10 warning signs of Alzheimer’s disease.

Beth Haas, Alzheimer Society of Oxford