Caregiving, mental illness and declining physical health
Reprinted from "Mind-Body Connection" issue of Visions Journal, 2014, 10 (2), p. 11
My dad has been ill for my entire life—I'm 31 years old. He has struggled with alcohol dependence, which masked an anxiety disorder, for over 30 years. When I was in high school, he declined sharply and ended up losing his job and his business.
By the time I was 12 or 13 I had become a caregiver. I didn't really have a choice, because my mom worked long hours and travelled a lot for her work. I distinctly had a sense of, "Hey, this is something different from other families." I always worried that others would find out about my dad, and it was difficult to find people to talk with about it. How do you explain the situation to others?
Caregiving as a young person was stressful. It was challenging to figure out what to do. I tried to model my mom's behaviours, but I was on my own a lot of the time.
When I was 23, my dad had a series of heart attacks, which sparked his recovery from alcohol use, as he was forced into withdrawal during his month in hospital. He's been in recovery for the past nine years, but still wants a drink sometimes. My mom and I keep coolers (alcoholic beverages) around to use in a "harm reduction" way—this allows us to manage his alcohol use, without him having to sneak around.
After the heart attacks, my dad had fairly stable physical health for about seven years. Then, two years ago, he had a stroke, followed by a confirmed diagnosis of Korsakoff’s syndrome (a neurological disorder often linked to chronic alcohol use).
With the stroke and the effects of addiction, his motor skills and mobility have deteriorated and his words get mixed up. Sometimes he's really insightful, but at other times he just repeats the same word over and over and there's no reasoning with him. He gets very frustrated as a result, which adds to his anxiety.
Managing my dad's care for his physical symptoms and disabilities is hard enough, but it has been a super challenge due to his anxiety. He gets anxious when his daily routine is interrupted, so the demands of these major physical health events and problems have really added to his anxiety. He's also super phobic of elevators, bridges and crowded spaces, so rarely leaves his neighbourhood and has to be accompanied to appointments. But with all of this, he still has fun working in the garden, watching old TV shows and telling jokes.
Mental health and physical health—they both matter
In the 1990s, health professionals tended to look at physical health problems, mental health problems and substance use separately. Early on in my journey as a caregiver, I would accompany my dad to appointments with our family physician. When my dad had a stomach problem, for example, the doctor looked at it as just a stomach problem—even though I can recall asking about the drinking. Our GP didn't consider mental health and substance use factors possibly contributing to the stomach problem.
Generally, I've noticed that people—including friends and family members—tend to trivialize mental health problems in relation to physical health issues. "At least it's not cancer," I've heard people say. The problem with this kind of comparison is it overlooks the significant impact mental health has on physical health.
People who have mental health issues have a greater chance of getting a chronic condition such as heart disease, stroke, diabetes and, yes, even cancer. We all know that stress affects our physical well-being. And, from what I've seen, having a mental health issue only compounds the negative impact of physical illness on one's life.
And clearly, declining physical health has a huge impact of on mental health. My dad experienced a depressive episode after his heart attack, and after the stroke, he was very angry for about four months.
I've noticed that more recently trained health professionals, many of them very young, seem to better understand how my dad's addiction, mental health and physical health issues overlap. They also seem to recognize the importance of involving the caregiving family members. After my dad's stroke, the health professionals would set aside time to meet with my mom and I, and they were willing to have conversations about my dad's moods, his alcohol consumption and so on. I even received counselling support from a social worker to help me through my dad's anger after the stroke.
My mom got more involved in my dad's care as the situation changed, going from alcohol use and mental health crises to more acute life-threatening physical health problems. Before that she had been somewhat desensitized to my dad’s behaviour and symptoms; there was blaming—it was something he made up or something he "chose" to do. But after the heart attacks and stroke, the health problems were no longer abstract, because health professionals could see test results.
The impact of caregiving on my life
Balancing relationships and educational and work goals with the demands of my dad’s mental health issues can be overwhelming. A couple of years ago I moved across the country to attend grad school. It's stressful to be so far away, but my family has found new ways to stay connected. My parents have learned how to use a cell phone. My mom and I use FaceTime (video calls over Wi-Fi from an iPhone, iPad, iPod or Mac), and I talk to my dad two or three times a day on their landline (he has a cell phone for emergencies). Although using the phone can be stressful for him, I think he likes having this contact with me, and I like hearing about how he is feeling.
I'm very aware of the need to maintain my own well-being, especially because there's a long history of alcoholism and mental illness on both sides of my family, and I've had some depression and other health issue. To ease stress, I walk, meditate and do a lot of art, particularly painting.
Three other things have helped me a great deal. The most important of these has been connecting with people who are my age and have been caregivers. Through studying in the mental health and substance use research field, I have made a lot of caregiver friends. We can talk about things that only caregivers can understand, like how to how to handle end-of-life care. And, as relatively young caregivers, we can talk about things like how to tell the people we're dating about our situation and experiences. Supporting these friends helps me too. For instance, through supporting a friend going through her dad's schizophrenia and cancer, I gained more perspective regarding my dad.
Another important piece was being treated respectfully by health professionals—in the emergency room and at the hospital, for instance. I was 21 and an undergraduate at university when my dad had his heart attack. It was a learning experience for me—I asked a lot of questions and found myself advocating for my dad. The professionals took me seriously; they talked to both me and my mom, and were willing to answer my questions.
A third piece was finding a doctor my dad trusts, and who tells my dad what’s going on without beating around the bush. After his heart attack, my dad got a new general practitioner (GP). Dad and mom can really talk to him, and that has made a world of difference. The GP makes sure my dad can access mental health services if needed and updates us on the status of referrals made by other health care providers and specialists. Keeping us in the loop has been really helpful.
There's still much to be done, however, about attitudes toward people with mental health issues—and their family caregivers. Young caregivers are stigmatized, as people tend to see the whole family as dysfunctional. And mental health issues just aren't seen as carrying equal weight with, for instance, cancer. I have friends who lost their jobs because they needed to take a leave of absence—when a teenage child attempted suicide, for example.
Our family members aren’t 'burdens'
Despite the challenges of caregiving, I wouldn't have it any other way. In one sense, it was a choice—I love my dad and wanted to do everything I could to help him.
My dad, like others before him, has been affected by mental health issues that contributed to physical illness later in his life. The difference between 'then' and now is that we now have the capability, awareness and education to reduce the stigma associated with having a mental illness—and with caring for a loved one with a mental illness.