Flowers, cards, and casseroles

Gifts given in times of loss

“Few outsiders noticed all that she had lost or that she was constantly in mourning.”

The first time I read that sentence in Pauline Boss’s book, Loving Someone Who Has Dementia, I highlighted it in purple. It comes as a summary to her story about two women: Mary and Ruth.

Mary’s husband died unexpectedly. There was a funeral and prayers. People sent flowers and likely cards and casseroles too, as caring people do. When friends suffer, other friends come around to show their support. Mary’s community gathered to support her and to help bid her husband “good-bye.” I suspect they continued to care for her in the months and years after her sudden loss as she adapted to her new life.

Meanwhile Ruth cared for her husband for years as he slipped further and further into dementia. Life went on for them—but now with perpetual losses and griefs. Ruth felt like she was living with a stranger and carried her burdens, Boss writes, “with a deep and chronic sadness as if there had been a death.”

“Few outsiders noticed all that she had lost or that she was constantly in mourning.”

It’s not the “outsiders” fault.

When we live with any kind of on-going grief or loss, many of us tend to put on a brave face, smiling when others ask how we are, pretending we are not dying inside.

I know this from experience.

There have been times in my life when I was hurting deeply, and did not share my hurt with others. The result? I felt more and more isolated in my pain, and withdrew even further. I convinced myself that others did not want to know about my suffering and would not understand if they did.

Today I know better; I have a sense that we all want to be seen. We are made for community. And when we carry a burden of any kind, that burden is heavier if carried alone. Just knowing that others know about our situation—and that they care—lightens the load.

I’ve written previously about how hard it was to keep secret the changes I saw in my husband during the long months leading up to his diagnosis. But once we had that diagnosis—in early January—it felt both appropriate and urgent to share the news.

Given that we had moved halfway across the country only a year and a half earlier, and that our lifetime of friends and acquaintances were far away, I thought the easiest way to spread the word would be to use a “megaphone.” So when Doug gave me his blessing to do so, I posted a note on Facebook.

“The time has come to share a truth of our lives with friends near and far,” I wrote. “Yesterday, a neurologist delivered some hard news. My husband of almost 40 years has been diagnosed with a rare form of dementia … If you would like to send Doug a word of encouragement or a memory or sentence of appreciation for the man he is and has always been, please feel free to post a comment below. I will read him every single one.”

It was a bold choice to “come out” on the social media platform. I was driven by selfish reasons—I wanted people to know our reality, my reality—I wanted others to share in my grief, to hear that Doug mattered to them too. But I was also moved by compassion. I wanted Doug to hear from his faraway friends. While he still had the capacity to remember and understand, I wanted him to know how much he meant to them.

There was another reason, too. I felt acutely that we had no reason for shame. It’s widely acknowledged that dementia carries a stigma. The only way that will ever change is if families who struggle with this disease bring the truth of their lives out into the open. Many people don’t know how to be around someone whose mind seems less than whole, and often, when behaviours become strange and communication difficult, friends fall away. In earlier stages of his disease, Doug worried about what others would think if they knew of his struggles.

But going public with that announcement proved to be the right choice. People responded to my announcement with compassion, not judgment. Friends from every age and stage of our lives rallied to my invitation, posting hundreds of comments. Dozens more sent kind remarks by direct message or email. It felt like they were sending us flowers—before the funeral.

I read every note and comment to Doug, and I’ve saved them all in a file on my computer for our children and grandchildren one day.

A small sampling

Here is a small sampling of the outpouring of love and kindness that we received:

“Doug, the first time I met you … I saw someone sincere, kind and loving. … Thank you for being willing to share that vulnerability which we all have at some time in our lives. You are not alone.”

“Mr. Doug Paddey you were my very favourite Sunday school teacher, always patient and curious about my sometimes contentious questions and always thoughtful and open minded/open hearted with your responses. Thank you for being a positive adult figure in my life during some troubling youthful years. Big hugs and much love.”

“You and Doug were the very best neighbours anyone could ask for.”

“Doug - you were so unhurried in your errand that you lingered a while to talk. More accurately, you stopped to listen.”

“I’ll be forever grateful that he was like a father figure to me when I was missing mine back home.”

“I know him to be noble, kind, and so fine in many ways.”

“Doug - I never heard a negative or discouraging word from you. … If you said you would take on something to do, I knew we had a winner. Whatever was done, it would be fresh and new. You have a rare attitude of hope that propels you above us commoners. Doug, you have a quiet and gentle spirit.”

Friendship is …

“Friendship is being with the other in joy and sorrow, even when we cannot increase the joy or decrease the sorrow,” writes Henri Nouwen in Bread For The Journey.

During a sorrowful season in our lives, friends from across the miles and across the years took notice. And then they took the time to let us know that they were with us in the midst of our sorrow by lavishing their memories on us. Their words testified to their love and concern. They honoured us both. And they told us that they will remember us in prayer. (Daily, I am encouraged as I think about their promises to pray.)

Their messages became gifts—and like the flowers, cards, and casseroles often bestowed in times of great loss—each one was appreciated, received with gratitude, and will long be remembered.

Knowing that so many others love Doug too, that the loss is not our family’s alone, has made all the difference.