My grandmother still struggles to understand her emotions. She was born Edith Obermayer in 1936, back in Nazi Germany. In that era, mental illness was not viewed as treatable. She immigrated to Canada at 22, married my grandfather, Siegfried Wichert, and had three children, the youngest my mom, Evelyn Lenti (née Wichert). In 2007, after nearly 50 years of marriage, Oma’s husband died. She was declared legally blind in 2005 and was diagnosed years later with myasthenia gravis, an autoimmune disorder that leads to the eventual loss of muscle control. She developed diabetes. She began a daily regimen of taking 25 pills. She could not get around without a wheelchair. Day-to-day living became more difficult — a common trigger for depression in older people.
According to Dr. Lesley Wiesenfeld, head of the Geriatric Psychiatry Consultation Liaison Service at Toronto’s Mount Sinai Hospital, there are three factors that play into most cases of late-life depression. First, getting older means experiencing loss — of health or abilities, of loved ones, of social connection. Second, many seniors facing mental illness may have struggled with undiagnosed depression for decades and are simply aging with their illness. Finally, seniors who develop brain-altering diseases, like dementia and Alzheimer’s, also commonly experience bouts of depression.
The problem, Wiesenfeld says, is that some may shrug off late-life depression by way of these triggers — thinking that because seniors have reached a point in their lives where difficulty and heartache are expected, “feeling bad” is a natural response that does not require professional care or treatment. “There’s an assumption that it’s normal to be depressed,” Wiesenfeld says. These misconceptions often prevent those in need from receiving help, even though Wiesenfeld says older people, like most others, respond well to treatment.
When it came to understanding my grandmother’s struggle, reading statistics and chatting with doctors wasn’t personal enough for me. So I joined a Caring for Elderly Parents Facebook group and asked members whose parents or grandparents lived with mental illness to tell me their stories. By the end of the day, I had received about a dozen messages.
The stories shared were difficult and trying to read — but, most of all, familiar. “This is the experience from hell,” one woman commented. Another from New York, who identified herself as J.R., said her 82-year-old mother’s bipolar disorder worsened after the death of her husband, J.R.’s father. For more than 30 years, her mother had tried different medications to treat her symptoms. “[She] told me just last week she’s not going back to the doctor anymore because she feels like a guinea pig,” J.R. wrote. Samantha Olliges’ mother-in-law, on the other hand, refused all treatment until she passed away last year at 84. Each respondent agreed that watching his or her loved one suffer was painful. It is an experience characterized by helplessness.
Oma was 74 when my family moved her into her nursing home. The process was arduous but necessary, spurred on by a recent brush with death and a new diagnosis with a debilitating muscular disorder. Her previous home, a lush, newly renovated retirement residence just north of the city, could not provide the care for this disorder, nor for her growing battle with intrusive depressive thoughts.
But her new home, while well equipped to meet her physical needs, struggled with her mental ones. Because nursing homes and assisted-living facilities house those with a broad range of illnesses and abilities, most nurses do not specialize in mental health care. Instead, seniors facing depression or other mental health challenges receive care from outside health-care providers — much like the psychologist Oma saw. These providers, however, do not get to know their patients on a day-to-day basis like in-house nurses.
For Sandy Lubert of Dundas, Ont., finding help for her mother, Midge, was like a game of tug-of-war. In 2001, at the age of 75, Midge attempted suicide for the first time in her Toronto condo. She later moved to a retirement home, where she tried to kill herself again. The same day she was hospitalized after her second attempt, officials at the retirement home told Lubert she had 24 hours to clear out her mother’s belongings.
“As we’re dealing with my mom being in the ER, we get the phone call saying, ‘You need to come in, and you need to pack her things up and you need to have her out of here by tomorrow. We’ll bill you for the cleaning costs,’” Lubert recounts. “They didn’t want any blood on their hands. They didn’t want people hearing that someone had tried to commit suicide in their facility.”
After spending months in a Burlington, Ont., psychiatric ward following her attempts, Midge was transferred to a nursing home, but the move was unsettling. Physically, Midge was well enough to take care of herself; she did not need to be fed, showered or clothed by nurses. Mentally, however, she needed assistance — something retirement home staff could not provide. “At times, she was just a psychiatric patient, and at times, she was just a geriatric patient,” Lubert says. “It was really, really hard to get her the right kind of care.”
That care is especially difficult to find in Canadian late-life facilities. Very little provincial legislation addresses mental health care for those in retirement homes specifically. Ontario’s Retirement Homes Act of 2010 makes reference to mental illness care just once, lumping it together with dementia care. In Nova Scotia and New Brunswick, legislation is more explicit, referring to specific mental health programs or “supplementary professional care” for those in need.
But even when help is available, late-life depression remains an elusive issue. Often, the elderly face the frustrating reality of having their depression overlooked, in part because the symptoms of depression — fatigue, loss of appetite and general sorrow — are so similar to the symptoms of other chronic illnesses.
Most commonly, seniors are misdiagnosed with Alzheimer’s or dementia when they are in fact depressed. Wiesenfeld says all three are linked together as cognitive illnesses, making it hard to discern between them. “Early stages of dementia include withdrawal and losing interest, which looks like depression,” she says. “But depression leads to a lack of concentration or focus that can also look like dementia.”
Lubert knows this predicament first-hand: her mother was misdiagnosed with Alzheimer’s and took the wrong medication for months. The Lubert children went to work on the wrong problem — looking into Alzheimer’s care for their mother, scrambling to get her affairs in order before she began to lose her memory, and coping with the fact that she may soon forget them. “It was really quite traumatic to have to go through hearing that diagnosis,” Lubert says. “It felt like we were going to have to say goodbye to our mom.”
Lubert’s experience is perhaps a sign of the predominant attitude toward the elderly. Most already suffer with a host of other ailments, so taking the time to properly assess their mental health is costly and inefficient — just one more problem for those already in the final years of their lives. The difference between youth care and elder care is staggering; it is unlikely that a depressed teenager, for instance, would be brushed off by his or her doctor, and there are a range of programs readily available for them. “Our society seems to be quite negating of people who are elderly,” says United Church minister Rev. Neil Elford, director of spiritual health, mission and ethics at Providence Care in Kingston, Ont. “If you’re not young, youthful, vital and healthful, you go against some of the main values of our society, which have to do with productivity.”
Elford adds that we all deserve dignity, even (or perhaps especially) seniors — and it is precisely this sentiment that is inspiring a tide of change for some Canadian health-care initiatives.
“Try not to think of a big white polar bear for 30 seconds,” Jenny Hardy tells a small crowd gathered at the University of Toronto’s Hart House. I am surrounded by about a dozen care providers who have cooped up inside on a sunny May day to attend the National Initiative for the Care of the Elderly’s annual conference on seniors’ care. Hardy then projects a cartoon image of a polar bear onto the screen in front of us, sets a timer and says, “Go.”
We are all thinking about big white polar bears.
It’s an exercise, she explains, in understanding just how difficult it is for those with depression to “just stop thinking about it.” It’s her way of helping attendees understand the need for seniors’ mental health care.
Since 2014, Hardy has been a facilitator and project co-ordinator for the province of Ontario’s solution to the ever-growing issue of elderly mental illness: “Living Life to the Full.” The pilot project, funded by the Ministry of Health and Long-Term Care, was offered in community and seniors’ centres throughout the province this past year, providing an eight-week course in managing mental health through 90-minute group sessions that are based on cognitive behavioural therapy techniques.
The course is a first step in government-funded assistance for seniors facing mental illness. But it has its caveats: it is a self-referring program, so participants must be willing to get help on their own. This would overlook someone like Oma, who is afraid of hospitalization. Self-referral also created a gender gap: about 95 percent of participants were women, despite the fact that elderly men are most at risk for suicide. While the pilot was subsidized, the program, once implemented, will set seniors back about $185 — something not all can afford. Most significantly, the program is not intended for those suffering clinical depression; in fact, Hardy says it is advertised less like a therapy group and “more like a cooking class.”