I'm stronger than I think. How I learned to push back against my husband's misdiagnosis

This First Person article is the experience of Dianne Bertold, who supports her husband in Grande Prairie. For more information about CBC's First Person stories, please see the FAQ.

Leaning heavily on his walker, my husband Paul peers through the front window into the darkness, dreading the home-care worker's arrival and his recurring loss of privacy.

"Don't open the door when she comes!" he said.

Then he studies my face and adds: "I'm sorry to tell you this but I can't see you any more." 

This strikes me as funny. I giggle aloud while stifling a belly laugh. He was recently diagnosed with moderate to severe dementia. Does he think I'm a girlfriend, not his wife of 43 years?

But dementia patients can also say things and mean something totally different.

I decide to face my tenuous marital status later in the bedroom: "Who am I?"

"Dianne."

"What am I?"

"My wife."

This is seriously the best day since his discharge from hospital. I'm not banished to the guest room!

This is a story of misdiagnosis, and of our shared journey to recovery. It took humour, courage and more strength than I knew I had.

Through a year of infections, prescriptions, open heart surgery and sheltering in place, I journaled what I observed: increasing confusion, mild depression, withdrawing, his usual spark gone, worrying about money and the possibility that something was wrong with his heart again.

Inside me, my question "What is going on with you?" became "What the hell? Can you please move into wellness mode already?"

When Paul could no longer remember how to use a phone, I knew it was unsafe to leave him alone. I felt imprisoned with no one to call on for help. I felt guilty calling home care but I did.

I was headed for burnout. Within a week, he landed in the hospital on antipsychotics.

Canadian folk singer Murray McLaughlin's White Water began to run through my head regularly: "If life is a river, I'm in white water. Swept along to, I don't know where."

River rafting has never been on my bucket list — I'd rather paint the landscape than spend time on the water. Yet here we were, riding the churning rapids with no instruction on how to navigate through them.

Paul and I are retired, now 71 and 65, respectively. During our working years, he was a materials handling dock person for Canada Post; I worked as a secretary.

Not much scares me. But seniors tend to lose their voice and fade into the background when it comes to expressing their needs. Early in this journey, I learned that advocacy is a large part of caregiving.

I failed miserably in the emergency room one night when I was exhausted to the core. I had spent sleepless nights searching the Internet for answers to my husband's symptoms — I was losing my mind as fast as he was. 

Doctors didn't acknowledge my diligent research, and sometimes I felt brushed off like dinner crumbs. Who was I? Just the wife. The blood work results were mostly normal so they were not concerned. They didn't want to hear about the timing of prescription drugs and subsequent symptoms that raised a red flag for me.

In hospital, Paul was placed on antipsychotic drugs for insomnia and agitation. One nurse told me to get his name on the wait list for long-term care because it can take a year to get a placement. I joked that in a year we will both need a facility with the way I was feeling.

The unravelling of his mind was unbearable to witness, but I felt I needed to help him carry this burden. Although my hope was shrinking, I prayed for strength.

Three key things pulled us through.

First, an incredible support network emerged with friends, family, church family and home care.

Second, COVID happened, and overnight our world became inextricably linked by technology. Online therapies, Alberta Health Services' adult day program and other opportunities were at our fingertips.

And third, a kind-hearted geriatrician set Paul on the road to recovery. He told us the off-label use of medications for seniors is excessive; as we age, we react to drugs differently.

Over 11 months, he weaned Paul off of five drugs with no ill effects. His only diagnosis is expressive aphasia, which can happen from a stroke or brain injury. Since he didn't have a stroke, we suspect antibiotic toxicity caused brain damage. He still has trouble expressing his thoughts because the brain hemispheres aren't connecting normally, but that is being rewired.

The adult day program closed with the pandemic, so staff went to clients' homes for one-on-one recreation therapy. He made progress as his brain rewired itself. Paul has come far cognitively — from an initial score of 19/30 to 28/30 on the last two assessments; 26 to 30 is the normal range.

Initially, I resented how much my life changed. When do I get to live my own life? Who am I outside the caregiving role? While still wondering, I connect with friends, participate in webinars to keep my interests alive and attend online support groups. I choose to see this as an opportunity for growth and reinvention.

We are living our best life at this stage, and I've learned I'm stronger than I think.

This month, the CBC team in Alberta will focus on family caregivers and the challenge Alberta faces reforming care for the frail and elderly. Visit cbc.ca/familycare to read more.

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