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Snapshots of Dementia: The Greatest Gift

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

It began with a gift. A simple Christmas gift.

But it turned into so much more.

Kringler (Dansk Kringle)

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.

20 Comments

  1. Praying for you this morning.

    • So grateful!

  2. So thankful for wise counselors that God brings into our lives just when we need them most. Praise God He led you there that day. Still praying for you and Tom and your family as you continue this journey. Thank you for sharing from your heart. I know it is helping others to open their eyes.

    • Amen, Pam. I fully believe that! Thank you so much. You’re a blessing!

  3. Dear Marti, I so appreciate you and your friendship! Thank you for your prayers during this horrific time in my family’s life! I’m reminded that we all have burdens and personnel cross to bear! This truth causes us to never take our eyes off our Savior! Without that assurance, we would drown! Sending you hugs and Prayers!

    • I so agree. Shirley, I am doing my best to lift you and your precious family before Him every day. May you know His presence and peace ALWAYS. And I completely agree. Hugs and prayers right back!

  4. I am following your snapshots very closely and keeping track of all of your insight and experiences. It is giving me much to think about as I deal with some similar things in my life. Thank you for your honesty and transparency. I pray for you very often, sweet friend. You and Tom are so dear to me and I love you!

    • I’m so grateful! I have had similar comments from other friends, and that blesses me. The next time I’m up late writing after a long work day, I will think of you all. I’ve admired you from afar for a long time. HUGS and prayers!

  5. Marti, you said if you only helped one……you are helping many to understand what this terrible ordeal is doing to the patient and all the family and friends. My prayers for Tom and all of you for courage and comfort.

    • Oh, I do pray that is true, Priscilla. Thanks for your encouragement AND your prayers. Love to you and your sweet family!

  6. God bless you for sharing in such a vulnerable . way, Marti. I know you will help many people

    • I pray this is true, Linda. Thank you for reading and sharing your thoughts. Miss you!

  7. Marti: Never doubt you’re helping someone. You are showing others how to travel one of the hardest human roads and you doing it with such grace, sensitivity, love and dignity.
    Once again thank you for willingly and openly sharing what you’ve learned. Jim and I continue to lift you and yours up to our Abba Father.

    • I never doubt that the Lord is guiding me OR that you two are strongly supporting me. Grateful for your wise counsel and your prayers! Love to Jim too.

  8. I remember, back when I was singing with the choir, Tom forgot some important things that we had discussed. Even then, he told me his memory was bad. I didn’t know you were going through this. I had to call and remind him, more than once. Praying for you. Much love.

    • I have no trouble believing that, but I’m sad you had to experience it. Thank you for your prayers!

  9. I reached out just today for help from our family dr. Praying that my husband will agree to testing and finding a dr. who can provide answers. Thank you for sharing your and Tom’s journey.

    • I will be praying too, Mildred. Please keep me posted, and of course you’re welcome!

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