Author, Collaborative Writer, Editor - Learn More

Snapshots of Dementia: Sometimes, We Cry

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

Unsplash/K. Mitch Hodge

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.

14 Comments

  1. This made me cry. Cry for you, cry for Tom, cry for all the changes you are going through in your lives. But I also rejoice in that you have Jesus with you all the while, bolstering you up in the down times, and carrying you through the worst times, and giving you strength to keep going, even to the point of trying to encourage others who may be suffering in similar ways. Keeping you in my prayers, and hoping you and your family will have a blessed and beautiful Christmas, filled with the JOY of the Lord, no matter what!

    • I should have probably linked this to the “Forgetful Jones” post. We do have many happy moments. But he has cried more recently, and it’s his pain that moved me to write this. I know you pray with deep understanding. And thank you for your prayers and love.

    • Exactly what Pamela said. My heart goes out to both of you Marti. Thank you for sharing this. Sending much love.

      • Thank you, and same back to ALL the Mannings!

    • Marti you and your families story bring tears to our eyes as everyone reads it. Your love for Tom is so apparent and your trust in our Lord is even greater. Thank you for giving so much of yourself to others. Your story continues to inspire.

      • You’re sweet as always, Melinda. This made me smile! Hugs and love.

  2. My mom has definitely had way less emotional break downs as her dementia has progressed because she isn’t as aware of what she’s missing or causing. It’s actually the blessing part of the disease. But she definitely has increased apathy about so much too. Her energy level is dropping quickly from her not having the confidence or state of mind to do much of anything.

    • I see this as well. The memory less aspect makes things both harder and easier. Blessings as you care for your mom!

  3. As one of the very blessed people who knew Tom before his illness, I am not surprised at his response but it is so raw and gut-wrenchingly sad to hear. I cry with you.

    • Sad to bring you tears but grateful for your love. Always.

  4. Marti and Tom…please don’t ever feel that you are not HELPING people; far from the opposite is true. Your candor and transparency about your struggles gives others courage and a sense of hope that they are not alone in their own unspoken battles. It also gives insight to those not struggling, but hopefully encourages compassion. Much love and prayers for you both, as well as your families. May God give both of you a new purpose and plan during this changing season.

    • Thanks so much. This is my prayer for the blog and for our future as well. Blessings!

  5. Pamela said it so well indeed, so I can only say ditto. Continuing to pray for you both. ??

    • I’m so grateful. And I know about that annoying hearts/non-hearts feature! Love received!

Leave a Reply to Marti Cancel reply

Your email address will not be published. Required fields are marked *

css.php