I became interested in Zach Anner, an up-and-coming YouTube celebrity, because of my friend Christine. She, too, lives life from a wheelchair, diagnosed with cerebral palsy at birth. Currently working on her autobiography, Christine’s memoir opens with “It was lonely being a child in a wheelchair. I was bullied.” In an online interview with Oprah, when asked to identify his biggest challenge, Zach makes a touching admission: “Figuring out that I’m worth this experience, because it’s hard for me to accept that I might deserve this.” … More Lesson #22: The Stink of Stigma
As Joseph Campbell† and countless sages have pointed out, all human fears circle endlessly around the topic of death. Fear of anything is, ultimately, a fear of dying. Whether triggered by spiders, poverty, speaking in public or being alone, it all comes back to a basic fear of being separated from those whom you love and/or that which is most familiar to you, which is life. … More Lesson #21: Death Be Not Shy
The other day I walked quickly before a rainfall to secure a lone taxi. I was just behind a man who, as it turned out, also needed the taxi. A rare gentleman, he asked me where I was headed and offered to share his ride. As we awkwardly made small talk in the back seat of the cab, I mentioned that I had moved to the area to care for my parents, both with dementia and Alzheimer’s. … More Lesson #17: Help Help Help!
There is so much about caregiving that makes me sad, and looking back is a big one. Mom seems to be moving into an advanced stage of her Alzheimer’s; she has recently become more confused, less willing to get out of bed in the morning, and less connected with reality. She’s having trouble going to the washroom on her own, she struggles with her fork and knife, and her appetite has decreased. Along with her increasing inability to express herself, it’s truly heartbreaking. … More Lesson #16: Look Forward, Stay Present
My mother has shown signs of “sundowning,” which is a peculiar behaviour in some people with Alzheimer’s. The name is apt; when the sun disappears, the change in light can trigger confusion and agitation in the brain. I noticed this in my mother during the last months of winter. At around 6 p.m., she would start to become restless and uneasy, a bit “clingy.” I assumed it was because she didn’t want me to leave, having become dependent on me and our other caregiver. … More Lesson #15: Do Your Homework
My mother was often my first phone call when I was pissed at a colleague, thrilled about a new writing challenge, or just feeling blue and needing some cheer. She’s been there from day one, helping me put things in perspective and providing unconditional love. My Dad, too, has always been a kind and generous mentor, advising me in my career and with financial matters. I can’t thank my parents enough for j … More Lesson #13: Don’t Forget To Laugh
I’ve been dating an odd assortment of women for the past two years. My single friends are busy tweaking their eHarmony profiles and complaining about how hard it is to shop for lovers. I can relate; I’m looking for that perfect match, too. But the only partner I’m interested in these days is a caregiving partner. And finding that match has proven to be challenging. … More Lesson #12: The Dating Game
I have been in a mild depression for weeks, without any creative energy to lift me up and out. I’m no stranger to depression; it’s not the first or last time. When I was working for clients, it was relatively easy to take the time necessary to recoup and recharge. Nobody needed to know that I was down and out, except the people I trust to love and support me during those times. Now that I’m a valued caregiver, though, I can’t just “not show up”, and showing up with a positive frame of mind is more important than ever… … More Lesson #10: Just Show Up
I suspect that many caregivers live in a state of suspended animation, as if their own life is on hold. I’ve had this feeling a few times in the past two years — I turn 60 this year, and I know I should be planning my retirement, but it doesn’t seem appropriate or feasible. I keep renewing the lease on my apartment thinking – how permanent is this living arrangement? How long will my parents need me? It’s impossible to know. … More Lesson #9: Who, Me?
I had just arrived at my parent’s home for an afternoon of caregiving. Dad was in the garage, and when my car pulled in, he walked up the driveway to greet me. I’m not sure what it was – the big, smiling welcome on his face, the hunch of his shoulders, the sag of his pants, the enthusiasm in his watery, old eyes – but my heart lept into my chest and my throat tightened. I felt I was witnessing, in that flash, the transient nature of life, and its vital yet dwindling presence in this beautiful man, this very moment, this time-honoured soul. … More Lesson #8: My Heart Went BLOOM