Snapshots of Dementia: I Get That a Lot (and Why I Shouldn’t)
You’re so patient.”
“I don’t know how you do it.”
“You’re an example for others.”
I get that a lot. And to be honest, I shouldn’t.
I understand why. In sharing snapshots of our life while living with dementia, I do my best to be as transparent as I can. But I know there are things I miss. And I also understand that my perspective is not the only one.
When I teach on writing memoir, I encourage people to tell their own story, even if it’s not the way someone else remembers it. That’s what I seek to do here. So even though my story of LWD is not the same as someone else’s, it is my story—and thus our story, the best I can tell it, for both Tom and me.
But I want to apologize for the times—past, present, and future—I may make myself sound better than I am. Because here’s the real truth: I am so not.
Not patient. Not kind. Not good. Not any kind of example for anyone.
Left to my own devices, I am just the opposite: impatient, prideful, selfish, self-centered, easily irritated, controlling, and so much more. In fact, I’m probably less likely than most people to be a good caregiver for someone who is LWD.
But here’s the thing: The truths we celebrate this Easter weekend matter. And they changed my life.
I grew up with two wonderful parents who faithfully took me to church. The sermons I heard and lessons I learned shaped my standards and values. But until my junior year in college, they reached no further than my intellect.
If you had asked me back then, I could have told you that yes, Jesus died on the cross. I would have said that yes, God raised Him from the dead.
And I would have also said that I might go to heaven someday, that I tried to do good things to gain that privilege.
You see, I grew up trying to do lots of “good things” so I would avoid getting into trouble. That’s not a bad way to start out, but it’s not a great place to stay. And it didn’t give me a great picture of the God I know today.
You see, that God created me to love and serve Him, to honor Him with my life. He knew I could never do that on my own.
Remember? Left to my own devices, I am impatient, prideful, selfish, self-centered, easily irritated, controlling, and so much more.
Until my college years, I didn’t understand that I could never be good enough for God; I needed Him to be good for me. His death on the cross was not a symbolic act but a personal one. He took the punishment I deserved. He died the death I earned.
When I placed my faith in Christ, I not only received the promise that I will live with Him in heaven someday, but so much more: the unmerited ability to live a life I could never live without Him. The undeserved power to do that which I could never do on my own.
So when someone tells me “You’re amazing,” or “I could never do what you do,” I want to tell them the truth: I can’t either.
I used to believe if I just did more, tried harder, checked off one more box, everything would fall into place. Somehow, it never did.
Now, I know that my greatest power lies in my weakness. My greatest ability comes with my inability. And my greatest blessing comes through my greatest challenge.
A number of years ago, I adopted 2 Corinthians 12:9 as my life verse. For a still-recovering perfectionist, it fit. But I find within it even more levels of meaning now that we are LWD. Here it is in more than one version:
• “‘My grace is sufficient for you, for power is perfected in weakness.’ Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me” (NASB).
• “Each time he said, ‘No. But I am with you; that is all you need. My power shows up best in weak people.’ Now I am glad to boast about how weak I am; I am glad to be a living demonstration of Christ’s power, instead of showing off my own power and abilities” (TLB).
• “He told me, ‘My grace is enough; it’s all you need. My strength comes into its own in your weakness.’ Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness” (MSG).
I realize faith is a personal decision, and many live happily without it. But I also realize that without my own faith in Christ, I would not face my current situation with the peace and purpose and power I experience every day. I would not only lack the hope of heaven but the security of knowing that—even in my loneliest moment or my times of deepest sorrow—there is One who is always with me, who cares about my every need.
My God has not lived with dementia. But He has lived with confusion, darkness, and even despair, all of which we experience while LWD. And He has promised to be with me always—even to the end of the age.
This weekend, we are still LWD. But we are also celebrating His resurrection. Because of that resurrection, we can walk in power and victory while still in the grip of this brain-changing, life-shattering disease.
On one glorious day, my sweetheart’s hands will not shake, his speech will not falter, and his thoughts will not tangle. On that glorious day, God will wipe every tear from his eyes. On that glorious day, he may again lift his trumpet to praise his King.
On that glorious day, dementia and all other evil will be no more. Because He lives, we shall live also.
He is risen. Alleluia!
If you or someone you love is LWD, how has your faith informed and inspired you? Would you say your faith has become personal, as mine is for me? Even when, perhaps especially when, we are LWD, faith is worth exploring.
Feel free to share your comments below or on social media. Our story matters—and so does yours.
Beautiful, Marti!
Thank you so much! Easter blessings.