Of blessings and curses

And miracles of love and healing

My husband was diagnosed with corticobasal syndrome and frontal temporal degeneration—rare forms of dementia—in January. Arriving at that diagnosis took over a year, and Doug resisted getting there at every step.

“Why do I have to keep going to all these appointments?” he asked repeatedly. “Why do I have to keep doing all these things? I’m fine!”

But he wasn’t fine.

Having recently moved across the country to be closer to our kids, it was they who suggested to me that something was seriously wrong with their dad and that I needed to get him into a doctor to get checked. I remember the gut punch that came with their suggestion, confirming something my spirit must have suspected, even if my mind had refused to acknowledge it.

Soon enough, I too had to admit that he wasn’t okay. But Doug couldn’t see it.

In considerable measure, he still can’t.

There’s a medical term for being unaware of your intellectual decline: anosognosia. It occurs when the part of your brain responsible for self-awareness is damaged. You just can’t see what you can’t see.

A blessing and a curse

In Doug’s case, anosognosia has been both a blessing and a curse. It’s been a blessing because he isn’t depressed. Watching him struggle with both cognitive loss and depression over those losses would be devastating.

But it’s also been a curse because he hasn’t understood the need for doctor’s appointments and diagnostic tests. He hasn’t recognized his socially inappropriate behaviours—commenting on people’s looks on the street, or asking people how much money they make. He hasn’t understood the danger inherent in some of his actions—like when he combined cleaning vinegar and bleach in his workshop, causing a massive chemical reaction (by some miracle he did that right before walking out of the garage), or when the fire alarm went off in our condo and he refused to leave.

He didn’t want me to tell anyone about his initial diagnosis of mild cognitive impairment, or later, his diagnosis of dementia. He would say, “I’m not that bad. If you tell people, they won’t like me anymore.”

He also didn’t want me to ask people for prayer—when it felt like our world was falling apart, and prayer support was something I desperately wanted and we desperately needed.

For many months, I respected his desire for privacy. But doing so was agonizing. We were living in a new city, making new friends. At the same time, I was watching his personality change, his intellectual capacity falter, and his ability to communicate, plan, and process diminish. Knowing something was wrong, I wanted to tell people, “This is NOT the man I married.”

For almost 40 years I’d been proud to call this handsome, intelligent, outgoing, creative, and caring man “my husband.” It hurt to realize that people only saw him as he was in that moment, that they couldn’t know all that he had once been.

But out of respect for his wishes, I stayed silent. In the company of others, I tried to act like nothing was wrong. It was one of the hardest things I’ve ever done. I felt like I was living a lie.

When we live a lie, we refuse to let people into the realities of our lives. We miss opportunities for others to share their realities with us. We lose sight of the truth that every one of us is fighting some battle. We preclude others from coming alongside us to offer comfort and support. We—who were created for community—start to think we are alone.

I felt so, so lonely.

When truth feels like betrayal

Eventually, I made a different choice. I began to tell a few close friends about what was going on. It was a relief to express my concerns to them. But every time I shared information about Doug without his knowledge it felt like I was betraying him. I questioned my motives; was I being selfish out of my own need for solace, to feel seen, or understood?

Every time I stepped into another room, or stepped out for a walk—to make or take a call with a specialist or schedule yet another test—so that he wouldn’t overhear, it felt like I was being dishonest. In all the years of our marriage, we had never kept secrets from each other, and I hated how it felt to keep secrets from him now, even as I told myself it was for his good.

Things came to a head between us one day last September, as we were preparing to host our “care group” from church. Our group consists of Doug and me and four other couples at similar ages and stages of life. We meet every few weeks for Bible study, prayer, and friendship.

Doug’s health had loomed so large in my mind over the summer break and weighed so heavily on my heart that I couldn’t imagine sitting with that group of friends again and not being honest with them. I told Doug I wanted to ask for their prayers. He refused.

I told him that if we couldn’t be transparent with those people, of all people—if we couldn’t ask them to pray for us—I saw no point in continuing to be a part of the group. And I meant it. We would make that evening with them our last.

He must have thought about that all day because he erupted as soon as our group sat down together.

“Can I say something?” he blurted out to our group leader.

“Sure, Doug.”

“My brain’s not good,” he confessed. “Patti thinks it’s getting worse. Maybe I’ll get better. Maybe I won’t. But Patti’s taking good care of me.”

Photo by Michael Dziedzic, Unsplash

It was so hard for him to self-disclose. I could feel it in the way his body tensed beside me. I could hear it in his voice, the way it caught and sounded a little gravelly. And I almost cried recognizing his confession as the genuine act of sacrificial love for me and trust that it was.

A miracle of love and healing

Without hesitating, our group leader responded, “We love you, Doug, just as you are.”

Like air escaping from a balloon, I felt Doug’s whole body deflate as our group leader’s words of kind reassurance poked a hole in the tension, allowing him to relax.

When everyone had gone, I hugged Doug and thanked him for being honest. I told him his willingness to be vulnerable and transparent with our care group was a gift to me, and I was proud of his courage.

It was our first significant “coming out” moment. It was not the last.

“We have it in us to work miracles of love and healing as well as to have them worked on us,” writes Frederick Buechner in Listening to Your Life.

A miracle of love and healing was worked in us and on us that night.

Our care group friends prayed for us later that evening and they’ve been praying for us ever since. They’ve also continued to support and encourage us, and to let Doug know they value him.

And I don’t feel quite so alone anymore.