My Mom Has Dementia, And This Is What Scares Me Most

I talked to my mom today. I’m sure a lot of you talked to your mom today. It’s probably something as routine as putting on deodorant or brushing your hair.

But I haven’t had a normal conversation with my mom in a while.

She didn’t beat around the bush. I said hello, and she said she might not know who I am tomorrow, and as I heard those words, I sunk down onto the floor of my kitchen. I clutched the phone to my ear while squeezing back my tears, and I sat on my cold kitchen floor and reassured her that she would. That she will always know me, that she is the strongest person I know, and that she’s fought harder battles in her life.

She said she loved me at least three times, like she might never say it again. And I said it back, like she might not hear it again.

The following article has been edited but was previously published on Sisterwivesspeak.com. (No longer available.) I wrote this a year or so ago, maybe longer, and when I reluctantly hung up the phone with my mom, I remembered the words I wrote as they echoed in my head.

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I save all of her voicemails. All of them. Friends call and say, “Your voicemail is full. I couldn’t leave a message,” and I lie and say that I’m too lazy to delete my messages, but it’s not true. I can’t delete them because one day they may be all I have of her.

I fear losing her. It haunts me.

Losing the mother who I know today, who’s really not the mother I knew three years ago, who keeps changing every year, whose mind might never be “normal” again, who one day might not even recognize my face.

Death would be easier. Death is final and sometimes even fair. But my mother has dementia, and her mind goes through cycles. Sometimes she’s (almost) normal. She’s our now normal, but then there are times when she isn’t. And one day, those times will be all that I know.

Glenn Campbell wrote a song called “I’m Not Gonna Miss You,” which he recorded shortly after being diagnosed with Alzheimer’s. He wrote the heartbreaking lyrics “I’m still here, but yet I’m gone…” to help his family understand that the grief would be one-sided, that he wouldn’t “miss” them.

I picture a day when I visit with my mother, when she doesn’t know my name, who I am, and it breaks my heart.

Shatters it.

But what’s even more difficult for me to wrap my brain around is that one day, she isn’t going to know who she is. She won’t remember having five kids and keeping an immaculate house. She may not remember how she never met a stranger, how no matter where she was, she could make a friend. She won’t remember that she had the best sense of humor, and her West Texas accent only accentuated her wit. She won’t remember that she could make a room burst into laughter with one of her lines, like “madder than a pissant in a pepper jar.” She won’t remember being a daring child who wasn’t afraid to ride a bull or a horse that hadn’t been broken.

She won’t remember her first kiss.

She won’t remember giving birth to her first child.

She won’t remember all of the funny stories from her childhood.

She won’t remember dancing with my dad.

She won’t remember when she kissed me goodnight.

She won’t remember when she walked me into kindergarten and told me to be brave.

She won’t remember when she whispered in my ear just before I got married that no matter what happened in my life, I should put myself first. Always.

She won’t remember.

She won’t remember.

She won’t remember.

And what terrifies me more than anything is that she might be scared, and who will be there to comfort her if she doesn’t know who anyone is, if she doesn’t even know who she is?

There’s a song that a friend introduced me to a while back. It often randomly plays from my music library, and every time, it gives me this strange sense of comfort.

I want to comfort her. I want her to know I am always here.

I hope that when she is in that dark and scary place, she can just “be still and know.”