A Letter to My Grandmother’s Lewy Body Dementia

She’s gone.

The grandmother I loved is gone. Some may say she’s been gone since suffering a stroke that quickly worsened her Lewy body dementia (LBD) seven years ago. But to me, she was always there, right up until the moment she passed on March 24, 2016 at 3:16 p.m.

This disease is not something to be taken lightly. It strains families, financial resources and the individual with the disease. Coming from a medically trained family, we know the importance of sticking together during tough times. Yet, there were times when we felt alone. I felt alone. The worse part was that there was nothing I could do except to make sure she took her medications, she was fed, her adult diaper was clean and she was safely tucked back into bed.

Dementia, first of all, I just want you to know how much I hate you for making someone so near and dear to my heart suffer for so long. Someone who did nothing but good for everyone her whole life, despite a rough upbringing and abusive husband. Secondly, you have taught me some of life’s most challenging lessons, and I know I’ll be a better healthcare provider as a result of these experiences.

However, that’s not the point. You took my grandma, Nan, away from my family too fast. You forced me and my younger brother to grow up even faster. But it was never about us in our minds because we loved her dearly.

Dementia, when her mental deterioration wasn’t enough for you, you moved on to her body. She had good general physical health until the months leading up to her death.

Having a grandma with a disease that took away her memory was extremely challenging. As the disease progressed, she couldn’t remember the name of anyone or anything. Eventually, we placed her in a wonderful assisted living facility because we couldn’t safely watch her every move.

Dementia, you were horrible to her, but I want to highlight some of the positive memories from when she was lucid. Over the years before she developed her dementia, she taught me several valuable life lessons. Her most important lesson: “Education is your most powerful resource. No one can take your knowledge from you or keep you from learning.”

Growing up deaf, I was often bullied. The abuse was tough to deal with, especially when the administration of my grade school refused to take any definitive action. Whenever I would come home crying because I had been bullied repeatedly, she would always comfort me, give me ice packs and remind me that I would be a better person for my struggles.

I’ll never forget all the books she read to me when I was younger until she lost her voice and had to take a break. All the times we played in the backyard. All the times she pushed me on the swings or caught me at the bottom of the slide.

Nature was her favorite thing as she frequently took long walks each evening when I was young. People always tell me that your grandchildren were the center of your world. We had a wonderful time dying eggs, and I haven’t dyed them since you developed dementia. That was my thing to do you with you. Thank you for loving me unconditionally (even if sometimes you had a really good aim with your shoe when we were bad!)

My grandmother loved her children and grandchildren more than life itself. She fought as hard as she could to stay with us. She waited until we told her it was OK to let go. I’m blessed to be able to say that I had my grandmother for 19 long years of my life. I consider myself very fortunate. As I move forward into my adult life, I will always keep the valuable life lessons she taught me tucked away in my heart.

And dementia, mark my words, you may have taken her from me and my family physically, but as long as her legacy lives on, you didn’t win. Because unconditional love is stronger than any illness.

People may expire, but memories are timeless.

Lead photo source: Thinkstock Images