Abiding with Alzheimer’s: 8 Gifts from My Mother

My mother, Gigi Cotton, has been living with Alzheimer’s disease and dementia for close to 20 years. Even though Mom lives in LA and I live in Indianapolis, I manage her care with twice-daily calls, monthly visits and round-the-clock home care from Senior Helpers.?

Caring for my mom as I serve on the board at Eisai Pharmaceuticals and support nonprofits is truly a full-circle moment. I recently had the honor of sharing Mom’s story at the Alzheimer’s Association Community Leaders Gathering. It’s a wonder how much my mom teaches me about hope, love and resilience every day.?

Here are eight things I’ve learned on Mom’s Alzheimer’s journey that may be helpful to others, too.??

1. Focus on who they are today

When my mom was younger, she was truly a force of nature. An educator and entrepreneur, she was so sharp and moved so fast, I could hardly keep up. About 20 years ago, when it became clear something was wrong, we both denied it. When at last I embraced how Mom was changing, I changed, too. It took time, but I learned to put the past aside and focus on the now.?

2. Try it their way.

I remember a visit to Mom’s house in LA soon after her diagnosis. In the middle of a conversation, she suddenly said: “Take me home.” It was my natural inclination to remind her that she was home, so I did, and we argued. Then I realized: In her world, she’s not at home. So I said, “Mom, get your coat.” I walked her out to the car, then we drove around the block a few times. When we arrived back at her house, I said, “Mom, I brought you home.” She said, “Well, thank you very much.”

3. Join their world.

Because my mom no longer lives in my world, I’ve made a mental adjustment to live in hers. I’ve found that the worse she became at living in my world, the better I’ve had to become at living in hers. For example, I’ve discovered that it throws Mom off to talk about the present. Instead, she likes to talk about the past, so our conversations center on stories from her youth in Thomasville, Alabama. When we talk about those days and the people she remembers, I see an ease in her — a comfort. She feels current and engaged.

4. Set a goal.

My mom, who turns 95 this November, has long had a goal to live to 100. I’ve made it my goal to support her, and I’ve noticed a change in her behavior. In the early days, it could be a battle to get her to take her meds, eat or drink. Now she asks for food and stays well hydrated. We celebrate small victories together.?

5. Find joy where you can.

There was a time when I was much busier than I am now. I wasn’t well rested, my patience could be short, and I was often abrupt and curt with Mom — all the things I didn’t want to be with her. That’s when I knew I had to get help with her care. I’ve realized that, if I want to be part of my mom’s life, and to really enjoy the blessing that she is, I have to meet her where she is. It’s not a challenge anymore. I try to be who I can be for her, and it’s a joy to me.??

6. Give them space.

My mom has always been fiercely protective of her space — her personhood — and dealing with this disease can be exhausting. So, when Mom gets tired, whether it’s on a call or a visit, I say goodbye for a while. I leave and come back. It has been a revelation to me to understand that sometimes she simply needs her space.

7. Keep fighting for them.

It’s not a coincidence that I’m a new board member at Eisai Pharmaceuticals, which leads research and development in neurology, an area I’m deeply passionate about. Eisai manufactures Aricept, one of the most commonly prescribed medications for Alzheimer’s, and Lequembi, which treats early-stage Alzheimer’s and dementia. My mom has taken Aricept for years.

The mind is one of the last frontiers, and we’re still exploring. I’m intrigued by the Accelerating Medicines Partnership (AMP) Alzheimer’s disease program (AMP AD 2.0), which brings together the National Institutes of Health, industry (including Eisai) and nonprofits to accelerate the discovery of new drug targets, biomarkers and disease subtypes.

Speaking of nonprofits, my work with the Alzheimer’s Association hits home, too. I believe in the organization's national and local education and policy work. The Alzheimer’s Association's Greater Indiana Chapter even engages the arts to get the message out.

8. Let love abide.

I’m so grateful for the bond I still share with my mom. Our connection is a feeling beyond words. I’m lucky that I’m able to support Mom with excellent care, and I’m lucky that she still recognizes me — even my name and the sound of my voice. I fear the time when she no longer knows me. That’s the reality for many people who love someone with this disease. I’m happy to stay focused on the present: calling twice a day, visiting once a month, sharing stories as I hold her hand.

A Mother’s Day wish

As Mother’s Day approaches, I wish my mom and all mothers peace, love and blessings. May we care for you in the same patient, encouraging and loving way you’ve cared for us.

This content is provided for educational and informational purposes only and does not constitute providing medical advice or professional services. The information provided should not be used for diagnosing or treating a health problem or disease, and those seeking personal medical advice should consult with a licensed physician. Always seek the advice of your doctor or another qualified health provider regarding a medical condition.