Snapshots of Dementia: Who Are You, and What Have You Done With My Husband?
I know You’re able and I know You can/ Save through the fire with Your mighty hand/ But even if you don’t/ My hope is You alone.
I sang along with MercyMe as I drove to work, my voice quavering as the tears streamed down my face. Why did I even bother putting on makeup? It’s a good thing I have a long drive. Lord, give me the strength I need.
This scene repeated itself in my car almost every morning during the late spring, summer and fall of 2017. But why? Hadn’t the neurologist reassured us only a few weeks before?
Yes, by the doctor’s standards, Tom was fine. But more and more cracks showed up in his life.
As the days went on, some of these revealed themselves as fault lines. As they widened, the elements around them threatened to collapse.
Our communication. Tom’s job. Our finances. Our marriage.
I love my husband and want to honor him. I pray that nothing I share makes anyone think less of this loving, creative man created in the image of God. But I also feel compelled to warn people of the potential effects of a disease I believe comes from the pit of hell.
Strong words. But words from the heart of a woman whose husband of more than 30 years went from caring and committed, leading others to walk in faith, to falling prey to various online scams, often with a sexual connection, and showing decreasing interest in both his family and spiritual things. One day, he called me at lunch.
“Someone is blackmailing me through Facebook.”
“What? What do you mean, blackmailing you?”
“They’re threatening me. If I don’t pay them, they’ll post on my wall.”
“What are you talking about? Who cares if they post about you? No one will believe it anyway! Of course you shouldn’t pay!”
But he continued in an increasingly frantic tone, telling me about connecting with someone he said was a woman and that if he did not comply, “she” would post a video he would never want anyone to see.
I took a deep breath. “You’re on your own. Do whatever you want.” And for one of the few times in my life, I hung up on my husband.
Through my shock, I realized Tom had a serious problem. But I had long believed God would make up for any perceived lack in my life. I could trust Him.
Hence the MercyMe song. The tears. The prayers.
Tom did pay the money, and he said the police told him nothing could be done. But this action and others that followed moved me to do something that helped me survive my heartbreak: I insisted we begin marriage counseling.
I knew he needed help. And that meant we needed help.
I contacted my friend Dr. Ted Roberts and Pure Desire Ministries. God had given me a connection with them through my writing work several years before, and I trusted their biblical and clinical emphasis. I wasn’t even thinking of dementia at this point; all I knew was that Tom was broken, and I wanted to see him healed.
Our many months of counseling helped me in multiple ways. But for the most part, Tom seemed disinterested. Unless I helped him with the required homework, he completed very little of it. During our online counseling sessions, his answers were often monosyllabic, and although he expressed sorrow at some points, he also showed a shocking lack of empathy for my pain.
That summer, we celebrated one daughter’s wedding as I wondered about the state of my own marriage. And because Tom had always been in charge of our finances, he was able to hide the thousands he gave away to scammers even as our counseling continued. (Because I know some of you will wonder, yes, once I realized what was happening, I opened separate accounts to protect the rest of our funds. He never even noticed.)
Tom grew up with many wounds, and I don’t think I’ll ever know the depth of his pain. Later, with tears, he described that season as the summer he “got stupid”—far more accurate than either of us realized.
At the time, if I had read anything like this post, I would have known to return to the neurologist. Remember, I still thought he had only a slight memory problem. I had no idea there was a type of dementia that medical professionals refer to as the “midlife crisis dementia” because of behavioral issues similar to his. I didn’t realize apathy and withdrawal from family members came along with it. And I didn’t realize its name was frontotemporal degeneration (FTD), behavioral variant—the diagnosis we would not receive for more than two years after these events.
I believe sexual addiction is real. I hate the entire sex trafficking/pornography industry and everything it stands for. If you know someone with struggles in this area, I beseech you to seek help. I believe the church needs to do far more to recognize rather than ignore these problems and the wounds they inflict on families.
But I also hate dementia and the horrible ways it wages war on mind, spirit and body.
Our months of counseling helped me find my voice. As our journey continued, I would need it more than I would ever have thought possible.
If you have a friend or family member with dementia, you have no doubt witnessed personality shifts. These may not look anything like what we experienced. However, if you know someone who has suddenly “gone off the rails,” with marked behavioral and personality changes, I urge you to consult with a doctor. The problem may not be FTD. But it may also be more than simply a moral issue. Even if you don’t share here, please tell someone. Your story matters.