Alzheimer’s does not rob you of memories…It moves into your home.

In this profoundly moving true story, the author provides a rare, candid look into the life of a caregiver for the love of her life with Alzheimer’s disease. Jim is fading away before her eyes. She must learn to maneuver in a world turned upside down by the disease. There is never a time when grief is not hovering outside of awareness. The person she loves is both familiar and a stranger.

The Stranger in My Soul is a tender exploration of grief, guilt, and the renewal of love as it chronicles the challenges of Alzheimer’s caregiving, while the loved one is still living.

It is also a story of hope, of seeing a light in the darkness, of relearning how to love, of learning a new language when words no longer suffice, and of clinging to the soul of the one you love, even when their memories have abandoned them.

And, for anyone who has ever loved someone lost in the fog of Alzheimer’s disease.

Introduction

There is a certain silence that descends upon a home when Alzheimer’s enters. It is not the hush of a peaceful Sunday morning, nor is it the heavy stillness of an empty room. It is a silence that lingers, an extended goodbye measured in days, months, and years.

I watched Jim working on his crossword puzzles in his favorite chair; the sunlight caught the silver threads in his hair, and for a moment, everything was as it should be. He has been the love of my life for twenty-five years, the man who knew the cadence of my heart better than anyone else. But then he has shifted, and for a split second, there was hesitation—a pause where his mind groped for the name of a familiar face, or for the face itself. In that pause, the silence deepened.

The diagnosis was a seismic event. It sent us reeling into a world that suddenly felt unrecognizable, armed only with our love for each other and a terrifying new normal that we didn’t know how to face. As his memories unraveled like frayed yarn in a sweater, I had to adapt to an unfamiliar new role. I was forced to be the unyielding rock, its rough surface cold beneath my fingertips. I became the memory keeper, my voice echoing, the guide, with the path stretching endlessly before me. The weight pulling at my limbs, even as a tremor of weakness ran through me.

I am writing this book, The Stranger in My Soul, to process those pauses. Jim was having trouble finding his way around our own home. At that moment, I sensed his disappearance. Losing him bit by bit, day after day, was a grief that felt like a stranger moving in, making a permanent home in the deepest part of me.

Jim was becoming a different person to himself, the grief of watching him fade made me feel like a stranger in my own life—in my own soul.

I wanted to capture in this book the dichotomy of caring for a person who, though physically present, can often feel emotionally distant. The journey I’m on is not just about the practical caregiving logistics of doctor’s visits, medications, and endless adjustments to a new way of life. It’s also about the internal journey, and in particular the profound loneliness I sometimes feel, even in his presence.

If you are reading this, you, or someone you know, has felt that silence. You’ve felt the wrenching ache of losing a loved one, even though they are still here. You know the shame of feeling angry when you feel you should be patient, the heaviness that comes when guilt sets in. 

The fear of what’s coming is woven into everyday lives. When will I know the utter terror of the day when he might no longer recognize me? 

This is a book about loss and rediscovery. It’s a story about learning to love someone in new ways when the ways we used to love no longer apply. It’s about the discovery that the language of the heart is one the mind need not translate. Even as the “stranger” takes up more and more of his space, even as his memories continue to fade, the person that is Jim and the person that is me in relationship to him is not forgotten.

I hope that these words serve as a lighthouse for you. I want this book to be the hand to hold in those long nights and those moments of heart-crushing confusion. I want you to know that your anger, your grief, your frustration, and your exhaustion are valid, seen, and heard. We are on this journey together.

Love, I have learned, is not a thing to be vanquished. It is not something that a disease can conquer. It has only changed. It has become stronger. I am walking through the valley of the shadow of Alzheimer’s, but I do not walk alone. I have a map, written by the road I’ve already traveled, by the stolen moments I still have with Jim, and by the profound, enduring truth that even in the dimming twilight of memory, love remembers.