Inside the mind of Alzheimer’s: a caregiver’s haunting nightmare

An excerpt from Releasing the Butterfly: A Love Affair in Four Acts.

Imagine there must be thousands, if not millions, of family members and caregivers who wonder what it must be like to be the one who has Alzheimer’s. Genie and I have always shared our thoughts and experiences with each other. Often, I would imagine telling her about something that had happened to me and could hear her voice responding or laughing in my mind. It had been the same for her. After so many years together, we instinctively knew how each other would react. We had no trouble completing each other’s sentences, but what was happening to her now was mysterious to me.

One night, I believe I came close to understanding Gene Alice’s world, and it shook me to my core. It was one of those nights when sleep wasn’t restful but cursed. Just before bed, I had rummaged through a batch of photos and had come across a group of pictures from a fun going-away party in Amarillo. We were moving from our home of twenty-two years to Austin and saying farewell to dear friends. The coup de grace was a photo of a quilt our friends had given us. Each family created a square to depict some cherished moment from our time together as a big, happy family. Most were designed by our Presbyterian church, where Genie had been the organist for twenty years. Then, I realized that most of those couples were no longer intact. Each of the three couples with whom we stayed in touch had lost a spouse. Other than those three couples, all of the others who smiled at me from the photos were dead. I was sad and tired, so I went to bed.

How long does a dream or a nightmare last? A minute? Ten minutes? As long as the flash of a thought or memory or the time it takes to work through a riddle? I rarely remember my dreams and cannot recall ever having had a nightmare. But this one woke me up, leaving me terrified and sweating.

In the dream, Genie and I are at a party. All of our Amarillo friends are there, sharing laughter and stories conjured by our memories. We are all having a rollicking good time at the home of our wonderful hosts, Betsy and Don. As guests start to depart, Genie and I fold a quilt given to us by our friends and carefully place it in the back seat of our VW. I get in the driver’s seat and suddenly realize I’ve somehow lost the ignition key. It occurs to me that I must have taken it out of my pocket when someone asked to see a photo I always carry of Genie and me on our honeymoon. The key must be inside Betsy’s and Don’s house. I return to their front door and notice the house is already dark. I ring the doorbell to rouse our friends, but no one answers. I tap the knocker. Still, no one. I pound on the door. Our friends are gone. But where? How could they have left in the brief moments that Genie and I had walked outside and gotten in the car? And because, back in those days, we had no cellphones or Uber to call, not having a key and way home was no minor problem. My mind spins, and I’m starting to panic when the terror of it wakes me up.

Awake now, heart pounding as the dream seeps into my consciousness, I believe I’ve been given a glimpse inside the brain of a person with Alzheimer’s. Something essential is lost, and there’s no apparent way to get it back. The person is completely alone and feels helpless and abandoned. Family, friends, and caregivers are not there. She feels like screaming for help. Her body starts to shake from fear and panic. But she knows that screaming won’t help; no one will hear her. She must find a phone. But she quickly realizes she doesn’t even know who to call for help. She can’t remember. I feel that desperation in the nightmare when I’m knocking and ringing the doorbell. I need my key, and now I realize what it’s like not to have one. When something essential is lost.

Max Sherman is a politician and author of Releasing the Butterfly: A Love Affair in Four Acts.

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