A Rose by Any Other Name: Labeling Alzheimer's Disease

What’s in a name? Shakespeare, via Romeo & Juliet, figured a rose by another name would still smell as sweet. I’m not convinced. As a kid, the ultimate defense of playground cruelty was “sticks and stones may break my bones, but words will never hurt me!” Alzheimer. Guillotin. They were names before they were diseases or death sentences. Now the good intentions are lost in the fear and anguish.

Our family history of memory loss

My mom saw her mom deal with her dad’s dementia, then her own husband began to slip away. My grandma and my mom would talk about nursing homes and how they hated them. They visited various relatives over the years in those rural homes and never wanted to be in one themselves.

When Grandpa became less and less himself, Grandma was able to get Home Health to come out, as well as various cousins who would come by and help when she needed it, especially one neighbor lady who was on hard times, and Grandma hired to take up the slack.

My father's diagnosis

My dad’s diagnosis was Parkinson’s and “probable” Alzheimer’s. Apparently it’s “probable” because you can’t know for sure unless the brain is examined under a microscope, which can only be done at an autopsy, so we’ll keep it “probable.’ Thank you very much.

My mom's recent diagnosis

I have a distant memory, that I can’t quite place, of my mom commenting to me that she hoped she didn’t get Alzheimer’s. I thought, “Me, too!” She had helped her mom, then her husband. When she started having trouble finding the right words, she would say that she hoped it wasn’t Alzheimer’s. I thought, “Me, too…”

Now, my mom is facing that very diagnosis. What do I tell her? Can we call it something else? When you have cancer, people rally around you. You fight cancer. I have had cancer. Now I don’t. Other illnesses have initials, so you don’t have to say the whole thing, and people forget what they stand for. They are letters. They are not you. They are not pity and dehumanization and forgetting. Everything. Forgetting what your name is. Who you are. How to swallow. How do we fight this?

Using a different label than Alzheimer's

The social worker assigned to Mom’s case calls it “Overcoming.” A person with this diagnosis is overcoming her challenges. For now, we are calling it Memory Issues. She takes medicine for her memory. She has trouble with the TV remote and her cell phone, too. Alexa reminds her to take her pills. We are overcoming.

The nursing home discussion

I have told Mom, since she came to live with me after Dad died, that she is not going to a nursing home. She has a home with me and my family. She is our family. The only condition that I can imagine where she would go to a nursing home, is if she is not safe here. If she is so far gone that she is a danger to herself or others and we can’t care of her, then it is the best, safest solution for her. She was good with that.

At least I can allay one fear for now. Whatever you call it. The family history is not lost on me.