Before me sits a well-groomed 75-year-old man named Richard. His button-down shirt is tidy, and his khakis are well pressed. He is a former pilot and used to being in control. He is witty and quick to answer, navigating questions with a rapid side step. One would never know just by talking to him.
“He got lost in the cul-de-sac. He went for a short walk, which he’s done it for years. And then we couldn’t find him. It took us two hours of driving around the neighborhood to find him,” his wife, Beth, explains matter-of-factly. She manages to share this new reality without breaking, without showing a hint of anxiety. This is the first of many examples. Beth has already been struggling with this at home for weeks.
Richard still remembers the old things, his former job, his wife. He knows his love for her. But that doesn’t stop the march of this uncontrollable disease. It is disorienting for him, to not know what he didn’t know. And it is even more bewildering for his wife. This man that she promised herself to is no longer the same man.
Beth has taken over the driving and the finances. She has created a new rhythm. Would her son watch him while she ran to the store? Would she put him in adult day care? Would drastic changes be needed? And she looks to me for answers. What can we do about the aggression? What is the next step? Can I stop this?
As a physician, I’m supposed to have the answers, to have a plan, to have a pill, to have something. My job is to fix things, to make sense of the mess, to alleviate suffering. Besides coping techniques and decisions to prepare, there is little I have to offer. It can feel horrible, and I can feel helpless. All I have is my presence and shared grief.
I want to be able to say, “You are not alone,” but there is little reassurance found in the fact that they are not the only ones. Many have walked down this path before, but it is rarely discussed. It is a private suffering, hidden from plain sight.
My hope is that there is some comfort found in the community of shared pain, in the sense of “you are not alone in this.”
Another man, John, tells me of his wife Sarah. She is in the throes of the end stages of this disease. Sarah lives in a nursing home, and she has regressed and lost the ability to eat. She no longer knows him, and it is heartbreaking to him. He comes and sits with her every day, waiting for the end with his bride. He lives out that promise of “for better or for worse, in sickness and in health, for richer or poorer, till death do us part.” It is both incredibly tragic and stunningly beautiful. John’s faithfulness holds with each breath. As I watch from the sidelines, he inspires me.
On one of my last visits with Richard and Beth, she described their new reality to me. He was having difficulty using his tools, and his mood had changed. She was still figuring out how to navigate this season. Even as he had become a different person and the unknown was still on the horizon, she said to me, “You know, even with all the changes, we still laugh together. I’m glad we still have this. It’s one of the most important things”
*The names and stories of the persons described above have been changed for patient privacy.
Aimee is an Asian American physician, recently married to the love of her life. She loves deep, honest conversation, being silly with her husband, and pondering God’s presence in this broken world. She is honored to contribute to Red Tent Living but requests anonymity in respect for her personal and professional privacy. b