What Happens After a Dementia Diagnosis?

How often do frightening misdiagnoses of Alzheimer’s happen?

Lin Cochran Burgin
May 30 · 10 min read
My husband, Bill Burgin, took this photograph after he was misdiagnosed with Alzheimer’s

Until that phone call, I had always expected us to read to each other

Billy’s voice was what I loved most about him when we first met.

But when that phone rang, I heard him say, “I’m supposed to be in Augusta, but I’m in Macon, and I don’t know how I got here.”

If this were a movie, the theme from Jaws would be playing. Just when you thought it was safe to go into the water…

(…the “water” being marriage.)

I was already 62 and he was 59. I heard his voice and God’s voice at the same time. “It’s not too late for romance.”

I’d heard of love at first sight. But love at first listen?

When I learned he read his Bible every day, that cinched it

Our wedding photo.

I married my Bible-reading truck driver in 2009. We moved from Georgia to South Carolina into an A-frame and hung a sign by the front door, “All You Need is Love and a Cabin.”

I’m no stranger to character- building events that require me to reach deeply into the well.

— My firstborn son’s suicide in 2008. I knew it would take everything I’d ever learned about God to survive it.

— My diagnosis of COPD in 2004. Needing oxygen. Being kept alive by machines. Learning to see it as a blessing. Still working on that one.

— My husband Bill being told he had Alzheimer’s in 2010.

I put down the phone and screamed. Just screamed.

He had to park his truck, come in off the road, and start through the tests that would result in him being diagnosed with Alzheimer’s. What it did to our marriage would take years to work through.

Meager suspicions had waved red flags before that fateful day

We had met in 2004 when he walked into my office at the maintenance facility for a large truck line. I slid down behind my computer where I hid because I avoided talking to drivers at every opportunity.

My third career was driving a big rig before a back injury moved me from behind the wheel to in front of a computer. (I’ve always known I was a writer, but my first well-paying career was interior decorating. The second was newspaper feature writing and columnist. When the paper was sold, I drifted around, eventually, at age 55, getting my CDL and catching up on my travel. I’ll share some over-the-road stories in future posts.)

That’s how I know drivers get hungry for conversation. I usually left that up to the other female in the office.

But that voice — that melodious voice — drew me like a bee to honey. Corny or not, it is just so true! Within 15 minutes, I was running my fingertips underneath his shirtsleeve.

“Why are those beautiful arms covered in tattoos, and who is Susannah?”

A granddaughter he rarely saw because he was alienated from most of his family. I should have asked more questions about why.

Along with his granddaughter’s name, he bore a cross and scripture verses on his arms. He had the most beautiful shoulders I’d ever seen. I knew God was right. Indeed it was not too late for romance!

But I was going to have to wait

His 36-year-marriage was ending, but his divorce was not yet final. My 31-year-marriage had ended 17 years ago. I went a little wild after the divorce, but I had lived a celibate life for the past five years because I wanted more out of life than a good time.

I wanted to live in God’s will.

I did not hear from Bill for several months. Then he came by the shop to get his truck repaired, and I asked him to meet me in the breakroom. Over Sundrops and cheese crackers, feeling like a fool, I confessed I had loved him since the first time I saw him, or rather heard him.

We started talking on the phone daily. I learned his mother died when he was born; his father dumped him on his grandmother, a poor country soul with barely enough resources to feed herself, much less a growing youngster.

My heart broke for him, so when he started showing signs of rage I blamed it on his upbringing and his guilt over feeling responsible for his mother’s death. But man, could he push my buttons. I would overreact, he would rage. These patterns obviously did not serve us well

The phone call ended life as we knew it. His PCP recommended neurological tests: X-ray, CT scan, MRI, spinal tap, and a myriad of blood tests, which showed he carries the ApoE4 gene for Alzheimer’s.

The neurologist ruled out every other cognitive problem with a name, said by process of elimination it must be Alzheimer’s.

He prescribed Aricept, Seroquel, and Namenda.

Bill accepted that he carried the gene. He did not believe he had Alzheimer’s, and it turned out he was right. But he agreed to take Aricept and Namenda in case he might get it when he’s 80.

He admitted that Seroquel helped deal with some of his rage. He confessed that he was born raging. He remembered destroying a toy wagon because the wheel broke when he was five. His anger grew, mostly at me, for making him go to the doctor.

But the side effects were so severe he ended up sitting in a chair, drooling

For a while, anosognosia (an inability or refusal to recognize a defect or disorder that is clinically evident) protected him from himself.

He told himself the medicine side effects were temporary, and that one day he would feel better. As long as he believed there was nothing wrong with him, it was all my fault.

Of course, that meant I bore the burden of his illness.

Most spouses earn t-shirts that read The Brunt. I wasn’t into the caregiver stage yet. He could still drive, but he could not tolerate change. Every spoon had to be placed perfectly in the drawer or he had a tantrum. I tried attending an Alzheimer’s support group, but when I said he was still driving, they said I had to take his car keys away from him or else drop out of the group.

I turned to the internet for guidance.

The medications made him sick, but I also saw an improvement in his ability to solve problems and express himself.

Suddenly, he stopped taking all medications, got up out of that chair, bought a camera, and started hiking in the woods photographing waterfalls and rivers.

Photo by Bill Burgin

He hiked into deep woods all by himself, took pictures, and got himself safely home.

Clearly, this man did not have Alzheimer’s.

Still, something was wrong

One day he would say, “I’m dying, so I’m not denying myself anything.” The next day would say, “There’s nothing wrong with me, so why shouldn’t I do what I want.”

He would have no part of eating right and exercising.

“I wish I’d never retired. I shoulda’ just stayed out there. All this started when I came in off the road.”

Well, no. All this started only God knows when and maybe as far back as when you were five or six, whomping the tar out of that little wagon.

According to one study, the ApoE4 gene affects behavior 50 years back or more. So when did it start morphing into Alzheimer’s? When did he stop being a big teddy bear with a bad temper? Had wonky proteins made his brain forget how to figure and cut an angle with a saw?

I still believed he had Alzheimer’s, and I feared we’d find him dead in the woods.

I prayed for angels to protect him. Psalm 91 became my shield.

“He who dwells in the secret place of the Most High shall abide in the shadow of the Almighty”(Psalm 91:1 TLV).

God reminded me of the days when he read the Bible in the truck. Now even though he seemed to be reading, he couldn’t comprehend what he was reading. I was so confused.

My spirit was failing. How could it all have gone so wrong?

When did he become so angry? Was it in some rare lucid moment of utter comprehension?

Was fear of the future eating at him deep inside? Could he feel the darkness calling?

I ached for him. Those demonic whispers in the night.

But wait, it gets better. I begged God to help me, and He did

He helped me to change; “…transform your life through the renewing of your mind” (Romans 12:2 TLV) became my mantra.

I changed everything about myself that I could identify and that was within my purview. And on top of that, when I emptied the dishwasher, I placed the spoons as Billy wanted. As if that weren’t enough, the more verbally abusive he became, the quieter I became.

Patience, as I had never known, was at work in my life in ways that could only be God’s doing.

One day I heard Him say, “You’ve done all you can. You need to leave him to me.” So I did. I left.

When his GP doctor, a devout man, asked why I left I said, “Because God told me to. Billy lies to you. He only lets you see the good side of him, but he is so mean to me I am afraid what will happen if I stay. He’s drinking, and he has a house full of guns.”

I moved a hundred miles away to be near my son and his wife. I wanted to attend church with them, socialize with healthy-minded persons, go out to dinner with happy people, enjoy my own little apartment, regain some sense of civility, and start writing again.

The shock of my leaving had the desired effect on Billy and the doctor, who knew that as believers we considered our vows sacred. On his next visit, the doctor questioned Billy and probed for the truth. He prescribed a cocktail of anti-depressants and B-12 and started seeing Billy every three months. A friend’s son started checking on him regularly and spending time with him, teaching him to cook and to text: “I miss you.

What? This man who could barely use a fancy phone was learning to text?

How could somebody with Alzheimer’s learn new things?

While I was gone he started volunteering at a local charity.

Bill sorting books at the D.A.R Thrift Store in 2017 AFTER the wrong diagnosis

Soon he was courting me, 21st-century style — romantic text messages at midnight. Sometimes I would call him back just to hear that voice I love so much.

A few weekends I drove back to our cabin to see how he was, praying for guidance all the way. I did not want to mistake what I wanted for what God wanted.

“One with great rage will pay a penalty. If you rescue him, you will have to do it again” (Proverbs 19:19 TLV).

From the front doorway of the cabin, I saw a study desk in the corner of the living room where he read his many Bibles and watched birds in the feeders outside the windows.

That, more than anything he said, convinced me that the Shepherd had gone in after him and brought him out of his madness.

I believe God works through doctors who believe, as Billy’s doctor does. He was attending church alone.

When it came time to renew the yearly lease on my apartment, instead I gave them notice that I would be moving back to the cabin. That was three years ago.

I know it’s a lot to take in, but bear with me.

Now, I am 77 and Billy is almost 74. It turns out Billy does not yet have Alzheimer’s and may never have it. He does have some type of dementia and cognitive problems that are difficult to live with, but I’m not so easy to live with either. My COPD presents daily challenges for both of us.

But with the help of our new church family, we are making it day-by-day

We are socializing with healthy-minded persons, going out to dinner with happy people, enjoying our cabin together, and I’m writing again. Of course, Billy still has to take his meds, I must practice patience daily using the lessons I’ve learned, and we must talk about how things are with him and with us.

Even I was surprised to discover that the biggest blessing in this was God sending me someone I loved enough to be willing to change for.

Even then, it took several agonizing years to get me to thoroughly examine my heart. God can use anything to grow us up.

I suspect vitamin deficiencies and dental problems contributed to the misdiagnosis. But we will never know for sure.

He stopped driving the big truck before he hurt someone, and I learned how to depend on God minute-by-minute to help me think before speaking. Not that everything is perfect. I still have not conquered gentleness, and my expectations of him seesaw. He has to be vigilant about taking his meds. But now he does much of the cooking, and most of the time he empties the dishwasher himself.

And I read to him.

This story is published in Koinonia — stories by Christians to encourage, entertain, and empower you in your faith, food, fitness, family and fun.

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Koinonia

Stories by Christian writers to encourage, entertain, and empower you in your faith, food, fitness, family, friendship, and fun.

Lin Cochran Burgin

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A lifelong researcher, now focus on biblical mysteries. So much to write about, so little time.

Koinonia

Koinonia

Stories by Christian writers to encourage, entertain, and empower you in your faith, food, fitness, family, friendship, and fun.