Who Are We?

Through our lifespans, we take on many identities – but is that who we really are? I have been a daughter, sibling, aunt, wife, mother, grandmother, friend, mentor, confidante, chauffeur, boss, teacher, tennis player, ice skater, pickleball player, and musician – you get it. We are and have been lots of things over the years, but is that who we really are?

When I was diagnosed with Alzheimer’s, I was the marketing and theater director of a 2,000-seat performing arts center. I remember people saying that if I retired, who would I be? That is what I did for a living, and that is how people knew me – but is that who I really was?

Wrestling with a new Alzheimer's identity

Since my diagnosis, I am a different person. Most of the time, I am not the person that I like. I do stupid stuff, or so it feels. I say the wrong things. I don’t fit in. I get upset easily. I am paranoid. I may seem disheveled. I have a hard time concentrating. I don’t laugh as easily as I once did. I don’t like to go out as much. I get agitated. I am impatient.

This shift in my identity makes me feel unrecognizable at times. But, since my diagnosis, I am still the same. I am still a mom, grandma, wife, aunt, sibling, and friend. I still enjoy sports and music. I still have the same hopes and dreams for my family. I am still alive and thriving to the best of my ability.

Beyond the Alzheimer’s label: Seeing the person

However, most people now know me only as “the Alzheimer’s lady.” They don’t see the grandma who can play with her grandchildren. They don’t see the pickleball player. They don’t see someone who wants to make a difference. They see the medical label rather than my true self.

When you look at your loved one with Alzheimer’s, who do you see? You might not see your mother as nurturing anymore, but she is still your mother and has feelings. You might not see the person you want to see—but embrace who they are now. Those of us living with this condition cannot always adapt. We have to hope that those who care for us can. It isn’t easy.

We need you to see who we are in the moment—even if it is hard. We need you to be with us on our journey and help to guide us. We need you to accept that we are the same person; we have just changed. You need to change with us. This is a new stage of life for us, and these stages will continue to evolve.

Embracing the journey together

Parents grow and change as their children do. They might even get assistance from others on parenting and living through the growing pains. They might not like some of the phases their children go through, but they go through them together. Caring for someone with Alzheimer’s is very similar. Our lives should not come to a standstill with a diagnosis.

We must embrace the fact that this is a journey with lots of twists and turns. Our Alzheimer's identity is only one part of our story. Please remember that we are still people going through different stages of our lives, with feelings and emotions, and we love to give, even if it is difficult for us to express them. That is who we are.