Staring at Dementia, Fighting for Joy

She looks like my mother, but it couldn’t be her; this lady doesn’t even know my name. She thinks I have eleven brothers (I have two), including another named “Jeff” who lives next door. I reside 400 miles from my hometown in the Deep South, arguably in the lower Midwest if you want to make the case Louisville is not a Southern city. They don’t serve sweet tea here. Not many grits are on the menu unless you count Cracker Barrel. Not exactly a Southern town. Formerly, mom would have agreed. Today, she doesn’t know I live in Louisville and cannot name the state in which it is located.

I ask her: “Ever hear of my father, Charlie Robinson?” After a long, wistful pause, accompanied by a miles-away look, the mental wheels turning but not catching on any pegs, she says, “No, his name sounds familiar, but I don’t think I’ve ever seen him.” I reiterated that he was my dad, a paratrooper in World War II, a deacon in our church, a man widely admired in our little town for his integrity and commitment to Christ. “Remember, he died of an aneurysm back in 1991. You all were married for 25 years.” “Really?” she says. “I hope he was a good man. You seem like a good boy.”

I fight back tears. Mom turned 80 last year and we celebrated the milestone without using that number because the woman who taught me that the Bible is God’s Word, that Jesus is who he claimed to be in the Gospels, insists she is 64 and gets a little feisty if we challenge that number at all. Southern women are funny about their age sometimes, but this isn’t a product of Mom’s Appalachian upbringing. For the past four years, my mother has become increasingly locked inside herself, imprisoned by a dark disease her doctors simply describe as dementia. Today, she is completely shackled inside a dark mental dungeon from which she will not emerge until Jesus calls her to his side.

My family and I have seen the effects of Adam’s transgression slowly erase our mother’s memories and gradually steal away her uber-extroverted personality these past few years. I call her often, hoping to have one more encouraging conversation, hoping to talk to her about the things of God she once cherished, hoping at least to get her discussing her adolescent years, which included the Great Depression and World War II. I’m a historian. I love to hear about life in America back then from one who had a front row seat. But it’s not there. It’s not coming back.

A Slow Killer

Dementia, a disease similar to (but not exactly the same as) Alzheimer’s, is a cruel malady. Medical professionals call it the slow killer for a reason. Watching my mother die this way has been excruciating for our entire family. And many reading this article can no doubt attest to this reality, as it is a common feature of our fallen world. Here are some gospel-driven thoughts from my mother’s ongoing battle with this awful enemy:

• God has not forgotten my mother. Perseverance of the saints is also preservation of the saints. God’s promise to Joshua, the writer of Hebrews reminds, is a promise to us: “I will never leave you or forsake you” (Heb. 13:5). My mother’s mind has left, but the Spirit of the living God continues to indwell her. Jesus promised not to lose one of the sheep the Father gave him and nothing, dementia included, will snatch them out of his hand (John 10:29).
• Though her mind is ravaged and sometimes little remains that seems human in her ability to communicate, my mom is still made in the image of God. Dementia or Alzheimer’s does not erase the reality of Genesis 1:27. The absence of her mind has removed neither her human worth nor her personhood. Thus she should be treated accordingly—with full dignity. Paying her less attention out of fear, or worse, convenience, is not a Christ-honoring option.
• My opportunities to serve her are fading, but they are excellent. My mother is not in any position to reward me. No money. No fresh-baked apple pie. Not even “thank you.” Just like me when I was a child. Just like Christ’s service of us. We should never say, “I don’t know if I’ll visit her because she’ll never know I was there.” That is insensitive, cruel, and sub-Christian. This is a real opportunity to serve a woman who served me selflessly for nearly five decades. Christ has not abandoned her. I must not abandon her either.
• It reminds me that life is short. I turned 48 last week. I vividly recall my mother at 48. I can still see her manning the concession stand at my Little League games. I can hear her laughing with my friends during youth group sleepovers. Our house was the gathering place during my teen years in part because my parents were beloved by my friends. James 4 reminds us that life is short. The only thing consistent in a fallen world is that nothing ever stays the same. This alone validates C. S. Lewis’s famous line, “I was made for another world.”
• It reminds me that life is uncertain. I recall a July 4th picnic four years ago at my mom’s house. Her food and hospitality were the centerpiece, which was the norm. She’d recently been interviewed about our family by the local historical society. Here memory was blue-sky clear as she spoke about our ancestors who were early settlers in North Georgia. She told us all about it. But within one year, dementia had sunk its deadly tentacles into her. Her mind deteriorated rapidly. Before long, she didn’t know the location of her own home. Her mind began to falter almost overnight. This has encouraged me to reflect more often on Jonathan Edwards’s 17th resolution: “Resolved, that I will live so as I shall wish I had done when I come to die.”
• It reminds me of how we are to respond as a church. At minimum, someone in your church has a loved one suffering from dementia or Alzheimer’s. Reach out to them. Reach out to their caregivers. I am learning this disease is perhaps worse for the primary caregivers than even the patient. Caring for an advanced stage dementia/Alzheimer’s patient is exceedingly difficult. Often the caretaker has to perform all duties from bathing to dressing to transporting, not to mention cooking, laundry, cleaning, and much more. Perhaps more than anything else, caregivers need a break from their task. Dementia doesn’t take vacation days and neither may the caregiver. Sometimes they simply need to be around people able to have normal conversations about normal things, or they need to be away for a day or two. Sitting for a few hours with the patient is an excellent opportunity for effective ministry.
• It reminds me of the Christian’s blessed hope. It makes me long for the day when King Jesus will finally put sin and death and cancer and floods and hurricanes and dementia and Alzheimer’s under his feet. None of us knows what lies on the road ahead, but we have God’s certain Word that one day suffering and sickeness will be no more (see Romans 8).

A Future Hope

Above all, my family is grateful for the hope my mother has in the gospel. We don’t know how long Mom will have to contend with dementia—that’s the Lord’s business—but we know when she draws that final breath, her faith will be sight and a delightful eternity of rest will commence when she is safe in the arms of Jesus.