What Is A Secret Friend?
And when is a benevolent deception acceptable?
When the doctor told Abby that she had Early Onset Alzheimer’s, she said, “F*ck you,” and ran out of his office.
When her husband told me this story during a chance encounter in a parking lot, he broke down and cried.
Like most people, I thought Alzheimer’s was a disease that stole people’s memories. When I became Abby’s secret friend, I learned it’s much more devastating.
Think about all the parts of your life you cherish and value: Your dreams and visions. Your relationships and who you see yourself to be in the world. Your physical abilities. Your independence.
Now, imagine all these parts of your life being taken away from you. Imagine your sadness, frustration, and anger. And, it’s not just about you. Everyone around you is affected too.
When I met Abby’s husband, John, he was overwhelmed, exhausted, and suffering from grief and guilt. He had a full-time job and a wife with Alzheimer’s. His wife would wander and get lost, and the police would call him. He would have to leave work and retrieve her. He was being advised to put her in a locked memory facility. He had only one last option on the fated day we met: a secret friend for his wife.
John said his wife refused to accept her diagnosis, a day program, or any kind of caregiver. He said she just wanted to feel normal and do everything everyone else did. He said he needed to find someone, a friend who could take her places and keep her safe, and he would secretly pay them.
He asked me if I would be that person. I had just gone through a devastating divorce, and I needed a job. Still, I felt uncomfortable with the deception of the arrangement. However, after consulting with my sister, Nancy, I agreed to become Abby’s secret friend.
I wasn’t aware of any job description, so I made up my own. I have a bachelor’s degree in psychology and a lifelong interest in health and wellness. I have two grown children and many happy memories of taking them on outings and adventures when they were young.
We started with a trip to get coffee, and within a week, we were meeting every day. Four hours turned into forty hours and then fifty hours a week. As I learned more about Abby, I designed our days to reflect her interests and personality. We made friends wherever we went, and soon, we had an entourage joining us on our adventures.
We became the stars of Zumba classes. We were the darlings of the community center. We were famous at our Starbucks location. We were greeted at the Goodwill Store, the Allied Arts Guild, and Stanford University Biology Greenhouses.
The Bay Area, from San Francisco to San Jose and Half Moon Bay became our playground. We snuck into the Filoli Gardens, ate dinner across from Neil Young, and attended lectures by scientists from 23andMe.
We attended a play, Alice in Wonderland, at Alice’s Restaurant, and ended up at a tea party with the cast members. We giggled our way through estate sales as we tried on every crazy hat we could find. We were chased by potbelly pigs and covered in paint as we danced in a field at a Holi Celebration. We learned some valuable lessons at a ceremony with a voodoo priestess.
We had more fun in one year than some people do in a lifetime. Abby’s sister said she hadn’t seen Abby that happy since she was four years old.
But not every day was sunshine and rainbows. The losses from Alzheimer’s are staggering and heartbreaking. To watch yourself forget is a special kind of hell. Over the course of a year, I saw many of Abby’s fears become reality.
One of the most painful losses was the loss of independence. Abby said her driver’s license had been taken away because she had hit someone with her car. She couldn’t remember exactly what had happened, but she was mad that someone had called the police, and her husband said she couldn’t drive anymore.
As the months progressed, along with her disease, Abby found simple tasks such as getting into the car, answering her phone, or unzipping her pocketbook to be challenging. Sometimes, her insights were brilliant. When she couldn’t remember how to unbuckle her seatbelt, she sat back, defeated, and said, “Alzheimer’s is a kind of bondage.”
When her husband and her sister took her to the lawyer’s office, they all left in tears. Abby had forgotten how to sign her name. When she and her husband fought over what clothes she should wear and he stormed out the door, she collapsed in tears and said, “He doesn’t want a wife with Alzheimer’s. He’s going to send me away.”
One day, we were driving on Skyline Boulevard and accidentally found the place where Koko, the gorilla who learned to communicate with sign language, lived. I encouraged Abby to get out of the car and walk toward the giant, enclosed play structure in hopes of seeing Koko. When she realized what it was, Abby refused to go. “Nothing should be in cages or locked up. It makes me mad.” I hoped she would never find herself in a locked ward.
As her condition worsened and her husband’s ability to handle the stress of it dwindled, I saw how Alzheimer’s can decimate the lives of caregivers. Where I once wondered if I would recognize when it would no longer make sense or be safe to take Abby out in the world, I knew now it would be obvious. And where I had been troubled by the “benevolent deception” of being a secret friend, I realized that Abby had become a real, dear, beloved friend.
I promised Abby that I would write a story about her. She wanted everyone to know that someone with Alzheimer’s can still have fun, be a good friend, and get up and dance.
I also understand the tsunami of stress on a person caring for someone with Alzheimer’s. In addition to keeping her safe, Abby’s husband was also dealing with the loss of his vision of growing old with the love of his life. And, of course, so much more.
In the end, I wrote a book called The Secret Friend, to help anyone dealing with Alzheimer’s to learn from what we did right and what we could have done better.
Here are a few things that I learned about being a secret friend to someone with Alzheimer’s.
- Safety first. Always.
- Focus on what the person is still capable of doing.
- Be kind and compassionate.
- Acknowledge losses and try to fill in the gaps.
- Find activities the person enjoys. Embrace adventures.
- Listen carefully to feedback from the person.
- Don’t force any activity.
- Don’t let your ego interfere with life. Be silly.
- Caregivers need a break.
- Focus on joy.
If you are the secret friend, take care of yourself. Caregivers often become burned out and are unable to help their loved ones or themselves. If you need help, ask for help.
In hindsight, I believe the outcome justified the “benevolent deception.” I wasn’t able to cure Alzheimer’s, but as Abby’s sister told me, I was able to bring happiness to Abby’s last cognizent years. In the world of Alzheimer’s, it’s sometimes kinder and more compassionate to bend the truth and give someone peace and joy.
