Snapshots of Dementia: Sometimes, We Cry

Posted by Marti on December 3, 2020 in Dementia | 14 comments

I heard Tom before I saw him. As he came through the front door, he sobbed.

Working to sort, discard and pack our belongings in advance of putting our Florida home on the market, I’d had a few moments to myself while Tom went with one of our daughters to the county dump. He had driven one car and she, another. (Only a few weeks later, we had to take away his keys.)

“Baby! What’s the matter?” I called out as I hurried to meet him. His shoulder shook and the tears poured down his face.

“I just hate it when I get things mixed up,” he said. “I bet [our daughter] is so mad at me.”

He’d forgotten where the dump was, a lapse that cost them extra time. And no, our daughter wasn’t upset, but it took him several moments to calm down.

If you asked Tom about his illness today, he would say he has early-onset dementia, although he might not be able to tell you its name. But back then, we still had no diagnosis, and most of the time, he exhibited the typical FTD anosognosia or lack of awareness of his cognitive lapses and their effects. As our life continued to spiral in scary directions, this proved at best frustrating and at worst maddening.

That day, I realized something: I prefer it when he remains unaware. If he doesn’t know he’s forgotten, doesn’t realize he’s caused some sort of problem, doesn’t understand it’s not the website’s fault or the phone’s fault or the television’s fault but his own, he doesn’t understand his decline.

And he doesn’t cry.

That wasn’t the first day Tom cried, but it was the last for a while. He didn’t cry when, that same week, he made an inappropriate (not sexual) comment to a female friend.

He didn’t cry when I put the house on the market.

He didn’t cry when, night after night, I would come home from a long day at work, cook dinner, pack or do freelance work while he played on his phone, watched television or slept.

He didn’t cry when our children traveled hundreds, even thousands of miles to help us move—or when they left (two for what we thought at the time would be years overseas).

The disease has affected the part of his brain that controls emotional reactions, and the damage is uneven. Sometimes his responses are exaggerated, and at other times, blunted. With his and other dementias, what you see happening is not always what you get by way of response.

Sometimes, he still cries. We have recently begun attending in-person worship despite his vulnerability to COVID-19 because our church opened up a masks-required section. But every week, he’s cried on the way to church and through part of the service. Although he can’t often articulate his thoughts, I believe he grieves what should still be and, because of his dementia, is not.

 A job as a pastor. A leadership role. The opportunity to make a real difference in others’ lives.

The moments of clarity are often the moments that bring tears. One evening this summer, he seemed especially aware, and I tried to ask how he was feeling about all the changes in our lives. Most of his responses were minimal. But one thing he said won’t surprise those who know him: “I miss helping people.”

That made both of us cry.

When you lose your mind, whether all at once or piece by piece, you lose who you are. Tom is a people-lover, a smile-bringer, an encourager. I am asking God to give him more opportunities to express this part of who he is even as other parts of his personality fade.

I also thank God for the tender moments as well as the tough ones. Although neither of us understands the why, we trust Him enough to know He is with us in this long valley and its dark shadow. We don’t rejoice in dementia, but we rejoice in the One whose season we celebrate even now: Emmanuel, God with us.

Sometimes, we cry.

And always, we believe He is crying too.

Do you have a friend or family member with a dementia diagnosis or symptoms? Have you noticed emotional blunting, apathy, or exaggerated responses? Both patient and caregiver have multiple reasons for grief. Feel free to share in the comments below. Your story matters. Your tears matter. And so do you.