Lillian and Stephen’s Story
By Heather Anne Hunter
Lillian and Stephen were retired and living the dream. They loved to travel. Lillian, an active slim blonde, enjoyed playing tennis. Without warning, their lives changed overnight. On their way back from a vacation in Cuba, Lillian said she had a bad headache. When they got home, she felt worse, so Stephen called an ambulance.
Lillian was taken to Scarborough General Hospital. A CT scan showed she was having a stroke at the age of 66. She was transferred to the neurological center at Toronto Western Hospital. The bleed was inoperable. They could only hope that it resolved on its own. It did, and she lived, but brain damage had occurred – thus began the revolving door. She was transferred back to the Scarborough General, then to The Scarborough Grace Hospital, Whitby Mental Health Center, and Providence Villa. She was placed on psych wards where loud and boisterous mental health patients with Alzheimer’s Disease, Schizophrenia and Bipolar Disorder live in group settings. She was terrified.
Stephen is convinced that if she had been given rehabilitation from the beginning, her cognition would have improved. Doctors prescribed powerful anti-depressants and anti-psychotics. When Stephen argued that these “horrible drugs” were making her worse, they were dismissive. One doctor asked him, “Do you have a medical background?” He does not, but he knows his wife. She was sedated, shaking, “dumbed down so she would be no bother.” With no improvement after 8 months in medical facilities, Stephen brought her home.
Her memory was affected, she couldn’t cook or read. Her personality had changed. Her behaviour was erratic and volatile. Neighbours became afraid of her. He got very little help. People couldn’t deal with the behavioural problems. She became paranoid. When he was on the phone, she thought he was making plans to send her back to the places she dreaded. “I was the punching bag.”
Stephen couldn’t leave her side or she felt abandoned. He couldn’t go out. She was a flight risk. He had to watch her like a hawk or she would leave the house on her own. He was a prisoner in his own home. They were in crisis. “I kept her at home as long as I could.” After two years, Stephen came to the difficult decision to put his wife of 35 years into long-term care in January 2020, just before COVID-19 struck.
Stephen had himself designated an essential caregiver so he can visit her. He has a COVID-19 test every week. Every day she asks, “When am I going home?” Frustrated and afraid, she becomes aggressive with staff. PSW’s are not properly trained how to engage with people with brain damage. Stephen knows how to answer her, to soothe her. They call him throughout the day and he gets robo-calls about outbreaks in the home. “I live it every minute of the day. I have no life. If I knew she was properly cared for, I wouldn’t feel like this.”
Stephen believes that she doesn’t really belong in a nursing home, but there are no alternative living quarters for people like her. Because of COVID-19 restrictions, she is not allowed out of her room. Residents are isolated. As there are no programs or activities, she gets no exercise, hasn’t been outdoors in a year, and is lying in bed wasting away.
Stephen is irate. “The workers are not to blame. The staff is spread too thin. Front line workers have been forgotten. They still get no paid sick leave and no extra pay for working in a dangerous environment. In any other business, this couldn’t happen. The provincial government is sitting on federal money and despite all the promises, things haven’t changed. The homes are subsidized and make big profits while I am using up my savings. I may have to sell my house.”
“For-profit long-term care homes are in the business of making money, not professional care. People at the top, owners, CEO’S, shareholders, need to have a conscience. They are not reinvesting their profits in the homes and patient care. The government is allowing them to make money on the backs of workers and seniors, so they need to be publicly shamed into doing the right thing.”
“How do you keep going? How do you cope?” I asked Stephen, hearing the desperation in his voice during our phone interview. He admits he may be drinking too much now. Though not a solution, who can blame him? He is seeing grief counsellors, Melody at the Wood Green Community Center and Cole from the Alzheimer Society, as he deals with “ambiguous loss.” He is grieving the wife he once had, while she is still alive, so there is no closure. These “caring, young professionals who are making a difference in society” give him hope for the future.
Life’s not fair and this couple’s situation could happen to any of us. Fighting for a cause, to bring justice to residents of long-term care and to “make higher-ups responsible” gives Stephen strength and purpose. He has contacted the media and even the office of the minister of LTC, Hon. Merrilee Fullerton, but her staff were only interested in discussing problems in a specific home – not the systemic failings of LTC in our province.
This humanitarian crisis existed long before COVID-19 struck. Recently, concerned doctors have formed a group, “Doctors For Justice in LTC.” Hopefully, the government will heed their call to abolish the for-profit homes and improve conditions in the province-run residences to mitigate the immense suffering of residents and their families.
~ Heather Hunter is a retired school teacher living in Cliffside.