My Mother Is Still Alive, But I Don't Know Who She Is Anymore

Though my mother is still alive, the mom I have is like an alien to me. Dementia has robbed me of the woman who was my best friend for more than 50 years. I grieve the loss of what I call “my real mom” especially hard during the holiday season.

Two years ago, my mom experienced an episode of medication-induced psychosis. She was hospitalized for 50 days in a medication-resistant stupor from which she could not emerge and nearly died twice in the ICU. But she survived. Unfortunately, the damage done to her brain from this trauma left her with permanent cognitive impairment — frontotemporal dementia. She was also diagnosed with bipolar disorder during that stay, at the age of 79. This was her third psychotic episode caused by medication throughout her life, each one worse than the last. Now, her brain showed permanent damage.

Our relationship immediately flip-flopped when I became responsible for her care. The night I picked her up from the police station as she had abandoned her car in the middle of the road to get out and look at the stars is never far from my mind. She had been missing for hours and had been acting more and more peculiar for weeks since she started the new medication. I hospitalized her, thinking that as had happened before, once the drug left her system in about 10–14 days, she would be back to normal. That’s not how it went.

After she was eventually discharged, she had to go to a rehab facility to relearn how to talk, drink, eat, and walk. She now lives in a memory care facility as I am physically unable to care for her many challenging needs. I also work and have a child to care for while managing the many aspects of mom’s life: her bills, her four moves in two years, doctor visits, therapies, coordinating her care, her medications. Despite using a rollator walker, she’s fallen four times. Most recently, she hit her head so badly she needed several stitches. At her last facility, she had an episode of mania so bad they insisted on emergency admittance to a psychiatric hospital to protect herself and other residents. Then they asked me to find somewhere else for her to live. Finding a place that will take someone who has had a dangerous manic episode is a challenge — four days before moving into another facility, they told me they now refused to admit her.

Time marches on, despite my sandwich caregiving struggles. I love fall, and as I watch it dissolve into winter, I come alive. I love to watch the leaves change and drop. I enjoy being outside more in cooler weather. Thanksgiving and Christmas are my two favorite holidays. I always cook a big Thanksgiving meal which includes mom’s recipe for homemade noodles made weeks in advance so they can dry and be ready for the big day. She and I used to make them together. Each year, she’d show me again how she measured (no measuring cups or spoons), how to feel the dough, and know when it was right. I never thought I could do it without her. A few years ago, she tried to just supervise while I made them, but had to step in and fix it when I got it wrong. Those days are gone. I’m the noodle maker now, however they come out.

I had to order a Thanksgiving meal from a store the year she lost her mind, as I was too tired and stressed to cook. It was terrible, but nobody cared. Mom was still in rehab, and I was exhausted from being at the hospital every day for all those weeks. Seeing and hearing the things I did from her psychotic episode left me with lasting trauma that I’m not sure I’ll ever get past.

Previously, Thanksgiving Day’s all-day cooking fest always began with a unique family breakfast — a tiny sliver of homemade pumpkin pie (made the day before) and a small glass of white wine. A little sugar and alcohol set the tone for the day’s big tasks. That, too, is gone — I miss my old mom too much, and trying to continue the tradition while I cook by myself makes me sad instead of happy.

Last year, I brought Mom over for Thanksgiving, but it was a disaster. She is dangerously impulsive now. She takes things out of the fridge and cupboards and eats everything that isn’t nailed down, leaving half-eaten bananas on chairs and the fridge door ajar. She breaks things, falls easily, is incontinent, and needs constant supervision. It’s hard to cook a holiday meal while trying to keep the dog away from broken glass or cleaning up spilled coffee or human waste.

Our holiday TV-watching traditions are also gone. We always watched the Macy’s Thanksgiving Day Parade, but that has been spoiled due to dementia — she says terribly cruel things about the performers instead of being awed and delighted as she used to be. At Christmas, we used to watch Elf every year and laughed and laughed no matter how many times we saw it, but now she cannot concentrate on TV or books or movies. She talks constantly and says bizarre things that don’t make sense, or walks around distracted and getting into mischief — she must be constantly supervised like a toddler.

I don’t know who this person is who has my mom’s memories and looks and sounds like my mom, but I don’t enjoy her. I know other caregivers of people with dementia know exactly what I’m talking about. The loss of someone so dear to you while they are still alive is a constant struggle.

There are moments of clarity, where she is kind and loving, recognizes all I’m doing for her, and is grateful. I treasure those moments, but the feeling is gone from them for me. I’m always waiting for her to explode with some weird phrase or act in an embarrassing way when we are out. I had to quit taking her to restaurants with servers because of the bizarre things she said to strangers. But still, I take her out. I took her to see the leaves several times during the fall, and out for coffee and a sweet treat at her favorite coffee shop for her birthday.

When she was hospitalized two years ago, I cried almost every day leaving the hospital. I cried in the elevator, leaving the floor she was on after helping them hold her down while they tried to clean the gunk off her mouth and teeth from constant talking and no sleep. I cried thinking about how much her skin must hurt when she was so puffed up from infections, sepsis, and tons of medications in the ICU on a ventilator. I realize now that the crying I did then was grieving the loss of my mother, my best friend, my confidante, who was being replaced like people in Invasion of the Body Snatchers, but this was a brain-snatcher. This pod person full of mischief who speaks in quotes and songs and riddles is a mystery and a challenge, but I do the best I can for her every day.

I don’t know how I’ll get through the holiday season, except for one minute at a time. I miss my mom.

Nina McCollum is a personal essayist and content writer living in Cleveland, Ohio. Learn about her writing services on her website, read her nationally published essays here, or follow her on social media (IG, TikTok, BlueSky) @RustBeltRants.Do you have a personal story you’d like to see published on BuzzFeed? Send us a pitch at essay-pitch@buzzfeed.com.