Barb Brzezicki’s mother Stella was only 52 years old when she started to misplace her keys. Soon, it was credit cards, eyeglasses and losing her purse several times a week.
What was originally perceived as human error began to sound alarm bells. While pregnant with her second child, Barb’s mother almost ran her over while backing out of the driveway. When she took her to be checked, her mother’s doctor pulled her aside to ask, “Do you have power of attorney?”
The news that followed was crushing- her mother was in the throes of early onset Lewy Body Dementia, Alzheimer and Parkinson’s disease, a series of conditions that would eventually strip her of her ability to walk, go to the bathroom on her own and worst of all… recognize and engage with her loved ones.
Barb was a recently separated, young mother of two when she moved Stella into her home. With the death of her only brother a few years before, her mother was her only remaining family member, leaving Barb to carrying the full-load. As Barb remembers, “Just as my children were moving out of diapers, my mother was moving into them.
Still, Barb was determined to make it work. A rotation of professional caregivers from the CCAC- at 12 hours per week offered little support but was the only option available. Barb spent most of her time getting new caregivers up to speed.
Eventually, the stress caught up to her and she found herself self-medicating with a combination of alcohol and the prescription drug Ativan. Before she knew it, her life was spiraling out of control.
Barb managed to keep her mother at home for 6 years, until she started to develop hallucinations, screaming in terror during the night. She could no longer ignore the impact it had on her children: her 4-year old son was terrified of his “Babcia.” Barb made the heart-breaking decision to move her into long-term care. She lied to her mother and told her it was just temporary…
The night she moved in, Barb received a call from the home at 5am. Her mother was inconsolable. Barb could hear her mother in the background pleading to come home. “I promise I’ll be good!” her mother begged. Guilt-ridden and exhausted, Barb visited her mother, daily, advocating for her treatment. She used her own income to supplement the costs, stretching her already thin budget for her own expenses.
It was the day she witnessed her mother being hoisted by a ceiling lift to take her to the bathroom that Barb fainted. How could this strong, woman who had raised her and loved her, be reduced to this shell?
Barb reached the breaking point, suffering a severe nervous breakdown. She was ordered to take a medical leave from work, leaving her no choice but to tend to herself, so she could take care of her children and see her mother through her last days.
As Barb’s mother’s condition deteriorated, there were few glimmers of recognition. In October/2015, Barb’s mother had her last lucid moment. She looked at her daughter and said, “ I don’t know how I got here but I know I am sick.”
From that day forward, her mother could no longer form words; communication was reduced to howling noises. While out snow tubing with her kids, Barb received a call from the facility. Barb’s mother had developed aspirated pneumonia, a condition exasperated by her inability to swallow food properly. Gasping for air and in pain, Barb knew that there was little to be accomplished by treating her mother. What life would she be bringing her back to? She made the agonizing decision to let her mother go. She had suffered enough.
Stella, Barb’s mother was 64 years old.
We shouldn’t make caregivers choose between their parents and their health, it’s time for the government to do more to support the millions of unpaid Canadian caregivers who, like Barb, are asked to do far too much without the resources to cope.