I Had To Trick My Mum Into Assisted Living – And I Still Feel Guilty

The author and her mum in August 2019 (pre-Alzheimer’s diagnosis).“Are we in New York City yet?” my mum asked as we drove from Orlando International Airport to a hotel in Ocala, Florida. I couldn’t tell if it was a joke or if she was serious.It was close to 9pm. We had landed an hour earlier, picked up the rental car, and were now navigating the dark highways. I was moving my mum into assisted living.In September of 2021, she had been diagnosed with Alzheimer’s. She had just turned 68 in August, and I was turning 37 that month. Thanks to Covid, I hadn’t seen her for a year-and-a-half, and I couldn’t believe how withdrawn and thin she had become. By January 2023, she’d lost her ability to complete everyday tasks like making a simple meal, driving, and remembering to shower.She was set on staying in her home but resisted the in-home care we set up – I suspect because of what it represented: a loss of independence, a loss of self, and the acceptance of a disease that would slowly rob her of her memories and the ability to take care of herself. We had to make the hard choice of finding her a new home for her safety and wellbeing. But we knew she wouldn’t be interested in moving to assisted living. So, we agreed to pitch it as an opportunity to spend the winter near my brother in sunny Florida, while living at a “cozy winter condo” we told her we had arranged for her. <hr width=50%>A few days earlier, I had arrived at her house in Pennsylvania after a long flight from Amsterdam, where I now live, jet-lagged and anxious, to help pack. A full-time caregiver had been staying with her since she fell and banged her head a month prior.“I’m moving to Florida to be closer to my son,” my mum told her, as they sat on a beige loveseat sofa in my mum’s den.I bought three large boxes, filled them with random odds and ends, and stacked them in the living room. The house wasn’t mine, and I hadn’t grown up there, but it still felt like home. The bookshelves were packed with a lifetime of my mum’s books. She asked me over and over how we would move them.“We’ll deal with it later,” I reassured her.She woke me at 3am some nights, fully dressed. “Do we need to go to the airport now?”Each time, I told her no, it wasn’t time yet. The idea of missing the flight kept her up at night, but the idea of what was actually happening she never really grasped.<hr width=50%>We took a car service to the airport, and I didn’t take a final look as we pulled away from the house. I was too focused on my mission to get her safely from Pennsylvania to Florida without causing her anxiety or letting her feel the gravity of the situation. I didn’t realise I’d never step inside that house – my mum’s house – again. By May of that year, we had sold her home. The author’s mum at her Pennsylvania home in July 2022.At airport security, she fidgeted, lost in the process. I guided her through like a child – shoes off, bag in the bin, watch removed.I couldn’t book our seats together, so I took the aisle while she sat in the middle seat a row behind me. Every few minutes, I turned to check on her. She was sorting through her purse, over and over. The man beside her caught my worried glance and offered to switch seats.I sat next to her. “You’re OK,” I whispered. “You don’t need to keep checking.”She nodded but kept sorting.<hr width=50%>The hotel we checked into that night felt like it was in the middle of nowhere with its parking lot filled with massive trucks. But it didn’t matter, we were only staying one night.I wasn’t hungry, but she insisted we eat. I ordered pizza on Uber Eats and asked what she wanted. She chose pasta.Forty-five minutes later, there was a knock at the door.“Your pasta is here,” I said.“Who’s that for? I don’t want pasta.”I felt something snap inside me.Was I upset because she forgot what she ordered? Because she kept asking the same questions? Or because I no longer had a mum to comfort me in moments like these?Growing up, my mum wasn’t as nurturing as I needed; I often felt misunderstood. But as I got older, around my mid-20s, something shifted. I’d call her to tell her about things going on in my life, and she’d listen attentively, never telling me exactly what to do, even when I wanted her to give me all the answers. I began to feel heard and understood by my mum.She wasn’t the soft, affectionate mother I often longed for. She was reserved, never showing or talking about her feelings, but she was a great example of a hard-working, independent, entrepreneurial woman who didn’t need anyone to take care of her. My brother and I both have our own businesses, which is something she showed us was possible.Since her diagnosis in 2021, she had become less reserved and more emotional. Watching her battle with accepting what was happening to her was heartbreaking, but I also felt closer to her, and happy to finally have her express and share her feelings with me. The author celebrating her mom’s 70th birthday in August 2023. The next morning, we ate a hotel breakfast of weak coffee and stale bagels before making the drive to the facility. As we pulled into the driveway, I tried to distract her from the sign at the entrance. But she saw it anyway.“What is this? Assisted living? I’m not doing this.”Panic grew in my chest. My brother arrived to meet us, greeting her warmly and steering the conversation elsewhere.Inside, we were shown to her apartment. A small kitchen on the left, a living room straight ahead, a bathroom to the right, and two bedrooms – one for her, and one for me and our sister to stay in when we visited. It was not the home any of us had imagined for her, especially at only 69. But it was now hers.For the next 10 days, I lived with her there. We went to meals together, reviewed the activity schedule in the mornings, and I dropped her off and picked her up like a child at school. She seemed happy during the move-in. We unpacked the three boxes we had shipped from Pennsylvania and rearranged some of the furniture that my brother had delivered ahead of time. We broke down boxes and lugged them out to the dumpsters together. Not very glamorous, but I could tell she felt productive, like she had a purpose again. We shopped for my brother’s 41st birthday. She picked out a card and a Snoopy stuffed animal. I suppose she remembered that my brother had collected Snoopy stuffed animals as a kid. While she wrote inside the card, she looked up at me.“Am I doing this right?”I reassured her, “Yeah, you’re doing great.”If she ever fully comprehended that we had deceived her, she never told us. Deep down, I think she knew she needed the help.<hr width=50%>The day came when I had to fly home.She walked me to my car and hugged me more than usual. She told me she loved me more than usual.“I don’t know if I can do this,” she said. “I don’t want you to leave.”I promised her she was safe, that people would help her, and that she would be OK. I left a corkboard in her living room with meal times, activity schedules, and phone numbers scribbled on bright-coloured Post-it Notes. As soon as I hit the highway, I sobbed.Reflecting on this experience today, as I type this from the sky on my way to visit her, I sometimes can’t believe what I did. But I don’t regret it. As our roles began to reverse and I shifted from being her daughter to being more like her parent, I got a glimpse of how hard motherhood can be. I learned that, like her, I’m not the nurturing kind.My mum lived in assisted living for two years until recently, when we moved her into memory care. She still has 24/7 round-the-clock private care, which she (and we) are privileged to be able to afford. Now that she’s in the late stages of her Alzheimer’s journey, the weight of the last four years is catching up with me. I’m starting to process what she – and we, as a family – have been through in the last four years. I’m sad, I’m angry, and I often feel like there’s a dark cloud hovering over me, following me around. Even though she hasn’t left yet, I have already lost her.I often think there’s so much we’re going to miss, so much I would still have liked to experience with my mum, especially in my adult life. I wish I could get to know her as an adult, as the woman she was before dementia, and not just as my mum. I wish I could ask her more about her childhood, my childhood, and the little things daughters want to ask their mothers. Like, “When did you go through menopause?” Or, “What would you tell your 40-year-old self now?”Since moving her into assisted living, I’ve visited her three to four times a year, every year. But no number of visits will make up for the memories we’ll never have. Alexis Mera Damen is a Dutch-American writer from New York who is now living in Amsterdam. When not writing, she’s on the padel court, travelling, or learning to draw and paint. Find her on Instagram @alexismeradamen or online at alexismera.com.Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at [email protected].

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