June 20, 2019
“I’m always in the present. I have to be one step ahead of David. Things go missing all the time in this house—the remote, mail and even the utensils. I’m down to a handful of forks! It would be simple if I could just lock the door to store some important items, but he doesn’t like that.”
Mary (name changed for anonymity) is the primary caregiver for David, her husband of 50 years who is in the final stages of Alzheimer’s disease. For Mary, ‘being in the present’ refers to her constant worry about even the most mundane elements of life that many take for granted.
Recent estimates show that over 5 million Americans are living with Alzheimer’s—a number expected to rise to as high as 16 million by 2050. Currently more than 15 million Americans function as primary caregivers and provide essential, albeit unpaid care for people with Alzheimer’s and other dementia-related illnesses, taking on responsibilities such as bathing, grooming, dressing, feeding, and providing additional daily living assistance. At times, caregivers may even have to manage unexpected and unprovoked acts of violence, paranoia, and inappropriate sexual behaviours. Mary understands this reality all too well. In an interview with the Trauma and Mental Health Report she confirms this additional stress:
“I take David everywhere I go. I’m always scared that he will do something unpredictable, embarrassing and grossly inappropriate.”
This demanding and overwhelming role can take an emotional toll, putting caregivers at risk of becoming socially isolated, exhausted, and suffering from burnout. It is clear that there are drawbacks to being a primary caregiver and Mary has experienced many of them, such as loneliness, guilt, embarrassment, frustration, and even verbal and physical abuse. Mary and many individuals in similar circumstances, continue to do so at the expense of their own wellbeing.