Snapshots of Dementia: The Greatest Gift

Posted by Marti on July 14, 2020 in Dementia | 20 comments

It began with a gift. A simple Christmas gift.

But it turned into so much more.

Every year, our family carries out a tradition my mother began. Although we don’t have a Danish background, we bake a filled Danish coffeecake called Kringler at Christmas. My mother always made several to share with neighbors, co-workers and special friends, and I do the same. Some year, just like Mom, I’ve made more than 20 of these delectable treats. This December, my list was small.

Our life seemed that way too.

The year 2018 had been another year of challenge. Tom and I continued our marriage counseling. Our counselors had stopped it that spring for several months because of his lack of progress. They wanted to see what the neurologist and neuropsychologist said, but once those doctors cleared him, we moved forward once again.

But 2018 was also the year I turned 60, and that July, my children surprised me with a family party and photos. I remember our oldest daughter saying, “Mom. You have to find a new neurologist. Dad dropped the ball multiple times when we were putting this together.”

“But we did see another doctor,” I reminded her, referring to the many hours of testing with the neuropsychologist. I already felt overwhelmed with work and ministry and marriage. How could I even think about finding a new doctor?

But all too soon, life forced me to think about just that. Because in late November, Tom acted on another “terrible, horrible, no-good, very bad” idea and lost a job he loved. A job he’d held for more than five years.

Just a few weeks later, he made another bad decision in a temporary delivery position he’d found. Another job loss. What was happening?

But Christmas is still the celebration of our Savior’s birth, and I still had so much to thank Him for, including the fact that I had a job and could work. That Christmas, I stopped by our former pastor’s house to bring him and his wife a Kringler. They had retired from the church in June, and although they knew about what had happened, I hadn’t spoken with them at all. In fact, I had barely spoken to anyone about it because I knew I would fall apart.

My work schedule meant I finally showed up at my friends’ house with their gift on Dec. 24. They graciously invited me in, and when our former pastor asked me about what had happened, my tears flowed.

I still look back on that day as a turning point. Not because I was finally sharing our struggles, as huge as that was, but because before I got very far into our story, this wise man looked over his glasses at me and spoke these plain and powerful words.

“Marti. There has to be a neurological explanation for this. You’ve got to find a new doctor.”

All these months, I had hesitated to speak with him—and almost anyone—about Tom’s problems. How many times had I heard, in one way or another, “He’s fine”?

But our former pastor started telling me about the many changes he had observed in Tom. And his list, although work-related, was almost identical to mine: The incomplete tasks. The withdrawal from relationships. The forgotten conversations. The poor decisions. And more. Again, he urged me to find a new doctor.

That day began a new era. I knew my husband. And I knew the many changes we’d seen had to have some sort of explanation. I still hadn’t heard of frontotemporal degeneration (FTD). In fact, I hadn’t heard of very many types of dementia. I hadn’t moved beyond the basics in my research because I had believed what the doctors told me.

But all of that was about to change.

My greatest Christmas gift that year wasn’t anything that came in a box. It wasn’t even the time spent with family, precious as that always is.

Instead, it was the realization that, no matter what the doctors said then or ever, something was terribly wrong with my husband.

I had to acknowledge that—because the truth sets free.

I had to make some big decisions—because Tom no longer could.

I had to pursue some real answers—because we hadn’t received any so far.

For all of those in this situation of waiting and wondering and finding no answers, please know that my heart hurts for you. Just as I will never forget the pain of infertility or of losing a child, I will never forget the pain of this season. As I said when I first started these snapshots, it takes more than three years for most dementia patients to receive an accurate diagnosis. For some, it takes much longer.

If these posts help even one person hear what I heard that day at my pastor’s house, then my time spent writing is well spent. If they help even one person press harder or find a new doctor, they’re worth anything I give. Because if they help one person, they’re also helping all the lives that person touches. And all those lives, just like Tom’s, just like mine, just like our children’s and our grandson’s, just like our other family members and friends, are precious.

Are you wondering about what you see in your loved one? Keep seeking answers. Change doctors if you need to. Find safe people with whom you can speak the truth. And feel free to share in the comments here. Your story matters. And so do you.