Fading in and out

Coming to terms with my mother’s Alzheimer’s
Leilany Sosa sits on her dad Wilfredos lap next to her mom Lourdes at a party at a friends home.
Leilany Sosa sits on her dad Wilfredo’s lap next to her mom Lourdes at a party at a friend’s home.

I noticed the first signs of my mother’s illness in 2019.

In one of our weekly calls, I brought up a story I had told her the previous week about how my friend and I skipped out on the opera after only 30 minutes. She had no recollection of the story. I was adamant that I had talked about it, and my father confirmed I was right. My mom was equally adamant that she had never heard the story, and it was obvious, even in that small moment, that she had no memory of it.

Little misses here and there began happening every so often. I chalked it up to fatigue and unimportant details. We even joked about her getting older, but there was a tinge of worry in the back of my mind when those lapses grew more frequent during our weekly chats.

Ever since I watched my grandmother lose her battle with early-onset Alzheimer’s disease, I’ve worried that one day my mother could face the same fate. Yet, I didn’t really believe she would. Not her. She was so healthy — she ate well, exercised, took every vitamin under the sun — and had one of the most photographic memories I’d ever encountered.

I remember an incident when my grandmother, who was visiting from Puerto Rico, asked me a question about our dog, only to run back into the room five minutes later asking the same question. I laughed, telling her, “You just asked me that!” I was 11 then.

I didn’t understand what was already happening or what was to come. I do now.

My mom, Lourdes Sosa, used to be a fierce woman who always stood up for herself and those she loved, even to a fault. She was sharp, always impressing people with the details she could recall about their lives. Before her illness, she could remember directions, even if she had only visited a place once.

Over the last four years, my family and I have slowly watched those skills fade. Her long-term memory is still with us, but her short-term memory has taken a beating. She forgets conversations we’ve just had, asking the same questions or repeating the same things moments later. This summer at her grandson’s first birthday, she asked, “Whose birthday party are we at?”

On a recent trip to Disney World in Orlando, she kept forgetting we were staying in her timeshare, not my brother’s home 230 miles away. Although she’d stayed at my brother’s house many times, she kept complimenting him about the timeshare, and we kept reminding her that it wasn’t his house.

Her memories shapeshift into each other, the old melding with the new. She went to visit a friend a few years ago, but instead of heading to the new home, she drove to the house where her friend lived almost 20 years ago.

At sunset she becomes easily confused and uncertain, a state I learned is called sundowning. She has to make sure doors and windows are closed, checking them multiple times and repeatedly asking if they are locked. She’s nervous now. She doesn’t trust her surroundings, especially when she’s away from my dad or in unfamiliar places.

I saw what this disease did to my grandmother more than 13 years ago, and even though I know what’s to come, I still can’t imagine my mother reaching that point. I know she will soon forget us and won’t be able to take care of herself. Eventually, her personality will disappear; she will lose the ability to speak and then to even breathe without help from her family and future caretakers.

I’ve always been a take-things-as-they-come type of person. That’s how I’ve decided to handle her battle with Alzheimer’s. It’s a day-to-day struggle, but I’m happy to know there’s still more time. Some days still feel normal, and I’m thankful when my mom seems to still be herself, but I also know it’s only a matter of time. I can stare Alzheimer’s in the face, call it by its name and see the toll it’s taking, but I can’t stop it. My grandmother lived with early-onset Alzheimer’s for 10 years. It’s been four years now since my mom’s first symptoms. So does that mean we only have six years left?

There’s no way to know, of course, and I think my mother is progressing at a slower pace, which I am grateful for. At some point with all dementia patients, the person you love is no longer there. That’s the part I’m not ready for — how could anyone be? Being slowly robbed of a parent in front of your eyes — their body exists but their mind is gone — is messy and awful.

I learned the term “ambiguous loss” from an NPR article by Alicia Vera. She described her own experience with her mom’s battle with Alzheimer’s, and it was the first time I could connect what I felt to my own situation — actively grieving someone while they are still alive. What a strange space to be in, physically and emotionally. With Alzheimer’s you lose a person twice.

My mother is only 64. She and my dad live across the country in Florida, and I live in California. The distance between us doesn’t make this situation easy, but my mom loves where she lives, and it’s the last home she really knows and remembers. She and my dad have been married for more than 40 years. I hope to see them celebrate their 50th anniversary. She’s seen one child marry, and she’s become a grandmother. It’s difficult to think about what she’ll miss.

And although she’ll live to experience more milestones, she might not be mentally present for the birthdays, holidays, weddings and grandchildren to come. There’s already a fog to everything she does now.

There’s a lot to learn from this experience, so I’m trying to be patient with myself and keep an open mind, even though I still falter. I’m trying to make more time for my family, and I’m learning to ask for help along the way. It took me a year to tell any of my friends that my mom was sick. I couldn’t say it out loud. I hated the idea of others having to grapple with the news — people who loved my mom and knew her for decades. I had to write it in an email and send it, because I simply couldn’t say it. Years into my mother’s Alzheimer’s diagnosis, I no longer mind talking about her disease. The weight grew lighter once the people I love knew, and once it was no longer my secret to carry alone.

I’m trying to enjoy the time I have left with her. I remind myself that from here on out, the memories we make are only for me. I get to keep them. I want my mom to enjoy the rest of the quality life she has left, and I want my dad to know he has done an amazing job raising us and caring for her. I want him to know that whatever happens next, we will figure it out together. For my siblings, I’m excited for all of life’s big events that we will celebrate with our mom, and after she’s gone, the ones we’ll celebrate with each other.