By Helena Wiest, who lives in B.C.’s Fraser Valley. With permission to re-publish from CBC First Person Stories.
My phone chirped its bird call ring, startling me from the tangle of thoughts that were choking the light from my mind. I’d left a message at 8:54 a.m. with the Family Caregivers of B.C., tearfully asking for someone to talk to.
I’m not normally the type of person to unburden my woes on anyone, least of all a stranger. But for 37 minutes, as a warm and gentle woman named Sage stayed on the phone, I sat weeping on the edge of the bathroom tub and unpacked the story of caring for my beloved husband whose neurological condition had rapidly deteriorated during the past two years.
For years, my husband had struggled with being disorganized in time and space, similar to someone who has ADD (which was an early diagnosis). He’d lost his sure and easy footing, often swaying when he walked because of his wide gait, and experienced various levels of bladder urgency.
In 2011, a fall in our kitchen finally led to a CT scan, which revealed he had extremely enlarged brain ventricles filled with cerebrospinal fluid that was not circulating as it should. The diagnosis — normal pressure hydrocephalus — explained the triad of affectionately named “wet, wacky, and wobbly” symptoms he’d been experiencing.
He had surgery to drain the fluid in his brain in 2011. That halted further damage and provided some improvement. For 10 years, we enjoyed a reprieve of significant symptoms. Then something went amiss.
Where he was once sharp and witty, he struggled to keep up with conversations and took agonizingly long to form responses as he searched for elusive thoughts and words. James rarely left the safety of his armchair, walking with an unsteady gait and being prone to falls. Before I went to my job at the library, I prepared meals and left them out for him. He wouldn’t have been able to process the steps to make something for himself and would go hungry instead. In fear, I bought him a membership to a medical alert system in case he fell when he was home alone and needed to call for help.
My youngish, 60-year-old husband was not the man I once knew. I was barely in my 50s, supposed to be in the prime of my life, but instead handling a life crisis that most would deal with in their retirement years.
Sage listened to me as I gulped out my story of anger at the medical system, at my husband and at my situation. The grief of losing pieces of my husband day by day was finally finding a voice, although not my own yet.
Years of checked emotions came out in my shaking sobs as I heard her affirmations of my efforts that often went unacknowledged. How I’d been strong to handle all that my family needed from me; how I raised our now 17-year-old son while I must’ve felt like a single parent; how the exhaustion of seeking answers from the medical professionals and feeling unheard must have been so discouraging.
She offered no solutions. Not one. Her voice was mellow and gentle, much like my own usually is, offering comfort in its gentle, assuring way. Even when I was silent, her calm voice anchored me in the present.
When I could at last take a deep breath without shuddering, I realized my storm had subsided, at least for that hour.
My imagination pictures Sage with hair falling past her shoulders, roundish eyes filled with sympathy, and a softness in her face that opened to the world. I guess you could say I thought she’d look like an angel, because to me, that’s what she was: an angel at the end of the line.
I never thought I’d be someone in need of calling a support line. I believed I had plenty of support to make it through any crisis — counseling, support groups, and some provincially funded programs for those with brain injuries.
But the anonymity and complete freedom that came from telling a trusted stranger my rawest and most vulnerable thoughts was like blasting out the boulder that kept me locked in my own darkness. I’d never see this person, and so I spoke with free abandon.
Since that phone call with Sage, I’ve called their support line one more time, and thought about calling more times than I want to admit. Caregiving is a lonely journey, one that exhausts your resources on so many levels.
In being able to speak honestly and vulnerably to a stranger at the end of the line, I came away feeling both heard and valued.
Call our BC Caregiver Support Line, Monday to Friday 8:30 am to 4:00 pm at 1-877-520-3267