As an occupational therapist and someone who has lost two family members to Alzheimer’s I know firsthand the toll the disease takes on everyone involved. The early signs are confusing and easy to miss, the mounting frustrations can feel overwhelming and the mental and physical decline is typically slow, painful and scary.
I am sharing my story because I found that knowing what to expect sheds light on what feels like a frightening prognosis.
When my mother was in her eighties, the symptoms of dementia began appearing. Her changes in behaviour would have alerted us that something was wrong, but we figured they were just the usual signs of aging. She also became adept at masking her limitations.
Still my mother’s decline and its impact on her daily life were profound. Gradually, she lost her memory, cognition and motor function until she was unable to perform even the simplest tasks that we take for granted – managing buttons, doorknobs, zippers or her walker. Her angst was evident in her frustration, agitation and restlessness. Her family members felt helpless in their efforts to help her. Life became increasingly more difficult.
In the midst of this dark, chaotic time, my husband was diagnosed with early onset Alzheimer’s disease. He was only sixty years old. Very quickly I became even more intimately familiar with the progression, stages and effects of the disease and I had no choice but to figure out how to cope—for his sake and for mine.
First of all, Alzheimer’s disease is not a linear journey. Things can change from one minute to the next and from day to day. Changes in behaviour are often unpredictable. For example, loss of inhibitions may result in uncontrollable language and/or physical aggression, “take nothing personally”, is a mantra that will help to keep you on track. In addition, I was advised by the neurologist right from the beginning to be proactive, not reactive. This is advice that I pass on.
Studies show that more than 60% of caregivers experience symptoms of burnout. Devoting so much time and energy to manage the health, safety and finances of another person can lead to a state of physical, mental and emotional exhaustion.
Finding support from family, friends and professionals is very important.
Yes, it’s difficult to figure out when and what to tell them. But, once everything is out in the open, there’s no more hiding or trying to explain irrational behaviour. There’s comfort in that.
Through the lens of my personal and professional experience, I wrote a short guide which is quick and easy to read, provides some critical information and advice for those who step up to care for people with Alzheimer’s disease. It is hoped it will help people affected by the disease to feel more in control and less lost and alone and help them through the stages, knowing more of what to expect, how to handle the changes.
Barbara Graff BScPT, OTc is an occupational therapist who has cared for hundreds of people suffering from Alzheimer’s disease. For the past twenty years she has been working in long-term care homes supporting clients living with the disease as well as their family.
Photo: Sven Mieke, Unsplash Canada
