The day after my mom was diagnosed with dementia I left the home my parents and I share for Mexico. This wasn't a vacation; I'm a travel journalist. Travel is my work, if almost always work I love. I was headed to Cabo San Lucas, to an exclusive resort off the Pacific coast, Pueblo Bonita Pacifica Golf and Spa. A more beautiful spot I don't think there is to process this kind of news, though it wasn't a surprise. Not a surprise at all. When my brother died three years ago, my mother's mind had begun taking turns down fanciful paths with views far more lovely than the one reality offers. She started to have spells during which she believed that her son was actually two people, one the grown man who had died of an overdose, one a child, a "little guy," who crawls into bed and sleeps with her at night.
These delusions, occasional at first, soon grew more intense, prolonged and frequent. Eventually she started believing that we're living in a different house than the one my parents had bought back when my brother and I were young. When her doctor told her gently, as sat I watching, that she "has some dementia issues," I simply nodded, went home and gave my father the diagnosis we both knew was coming. And then I finished packing. I wasn't in shock, but I suppose I was numb. Numb keeps me going. Numb is why I don't break down when my mom asks me, as she sometimes does now, "Where is my daughter? Where is Jill?" When she gets furious and starts yelling at me after I tell her we're not going to see her gram, a woman who has been dead for four decades.
I got on a plane to Mexico the next morning.
The section of the resort in which I was staying is more or less a resort within a resort. The Towers at Pacifica are brand new, adults-only, with frankly amazing services like a butler, who performed tasks that included unpacking my bags. That was a first for me. My parents have always been solidly middle class and I haven't risen above those ranks—I'm a journalist, after all. So while my dad was at home looking after my mom, I spent three nights in paradise. By day I sunned myself by the glimmering pool, while tanned, well-kept people laughed over brightly colored tropical drinks at the swim-up bar. By night I sat in my beautiful room, the patio doors opened wide so I could hear the sound of the surf, sipping bracingly strong coffee my butler had brought me as I worked on my next article.
Slowly, the knots left my shoulders. I think the worry lines between my eyebrows might have even eased a little. It was wonderful to be so well looked after, because it felt like a very long time since that had last happened. Every single woman who is taking care of someone with so cruel a disease as dementia should get a three-day pass to sit in an opulent resort along the sea in the Mexican sun. A prescription to Pacifica should be written and given to all the members of the "daughter care" army, as we're all being called now, according to the New York Times. The Times article sounded the alarm about the aging American population, the increase in dementia cases that will result from it (3 million more, up to 8.5 million by 2030), and the burden it will place upon women, who minister to elderly parents in disproportionately greater numbers than men. According to the Times, these duties, which are mostly unpaid, tend to isolate us socially, causing problems in marriages and friendships.
It's worse when the family members have a degenerative brain disease, like my mom has; they require 100 hours more care per week than people without dementia and the like. The stress is monumental, as I'm finding out. My mom's dementia is still relatively mild; she knows who she is, even if she doesn't understand where she is. She recognizes my dad and me, most of the time. She can feed herself. She still looks at the paper, even if she gets a little confused about what she's read. But attending to her is wearing on me already. I get anxious — my stomach clenches and my teeth grind. My hair is falling out. I cry a lot, though I make sure it's never in front of my parents. It was good, really good, for me to get away to such a beautiful, serene place. I needed the break desperately. But while I was deeply grateful for the opportunity, I also spent much of my time with something that seemed like a small, hot stone burning in my belly. What I felt there, sometimes flaring brightly, sometimes subsiding but never entirely fading, was guilt.
Do we ever feel like we do enough as caretakers? And is it truly ever enough? I work because I love it, but also because it's a necessity. My parents can't afford to pay me for the time I spend with my mother, so I can't afford to stop writing. I don't receive reimbursement for the hours I help my mom bathe and dress, administer her medicine, take her to the doctor. In essence, I'm trying to work two full-time jobs and I wonder if I'm doing either well. I feel like I'm constantly behind, that there is always more to do. The house is a wreck, the laundry needs to be washed and who's going grocery shopping? I do the best I can, but I'm never finished. I never catch up. So when I have to travel, or lock myself away in my room to write, I feel like I'm failing the only people who have never failed me.
At the same time, I worry about what I read in the Times: that caregiving is likely to negatively impact my finances, by damaging my career and ability to save for retirement. Once again, disproportionately more than sons, we daughters cut back on hours at work, take leaves of absence, and even quit our jobs entirely to look after our parents. Even if we remain employed we pay the price, losing promotions and getting penalized for taking time off. This prospect terrifies me. I'm not married. My long-time boyfriend dumped me last year, literally never to be heard from again, right as my mom's condition started to worsen. I can't afford to stop working, or even slow down.
These were my thoughts, somber as the Cabo sky was cloudless, as I headed down to the beach. I was joining a few other journalists; the idea was we'd fish from the sand and whatever we caught a chef from the resort was going to immediately slice and submerge in citrus juice, making ceviche. I hadn't put a line in the water since I was a kid, when my grandfather would take my brother and me out on the local lake with him. Grandpap was an avid angler; he grew up poor, working in the Pennsylvania coal mines at 13. As an adult he moved on to the railroads, but the pay wasn't much better, and there were plenty of times the only meat his family had was the fish he hooked and the game he shot.
I wish I could say that I did him proud, but I wasn't much better trying to cast as an adult than I had been as a little girl. The rods were long and unwieldy; it was surprisingly tiring flinging them toward the water, so that the filament would spin out past the breakers, to where the big fish were. I tangled my line with that of the person next to me more than once. I kept hoping whenever I actually managed to land my hook and sinker in the surf that I'd get a nibble. I was never rewarded for my efforts, but just feeling the cool sea wash over my ankles, the sunshine warming the top of my head and the tip of my nose, was more than gratification enough.
Happily, the chef was prepared. No one had snagged a fish, but he'd carted plenty from Pacifica's kitchen down to the little tent set up at the ocean's edge. A server brought me a strawberry daiquiri, ice cold and with red sugar dotting the rim of the glass. There was guacamole and chips to nibble on as we watched the chef chop onion and peppers, adding them to the fish that was curing in the lime juice. I wondered if just once in all the time my grandparents ate seafood, they'd ever tried ceviche. Probably not. Through most of the 20th-century, spaghetti was considered exotic in the little central Pennsylvania town where they lived. They only ever got on a plane once, to visit my Grandpap's brother out in Montana. But my dad's dad would have loved to see me fish in the big, blue Pacific Ocean, whether I caught anything or not.
I like to think Grandpap was on the beach with me that day—my brother, too, I can picture him giggling when I nearly snagged the journalist next to me with my hook after a bad cast. When I returned home, I tried to take my parents to Mexico, too, by regaling them with tales of my trip. I told them about watching a mama whale with her baby breach the water from Pacifica's golf course, nestled high atop cliffs overlooking the sea, about all the fresh seafood I ate, including that sublime ceviche, and how much I wished they'd been there to experience it with me. My parents were once travelers. My mom was a travel agent and that enabled them to visit places far-flung and exotic: Tahiti, Egypt, Africa. They miss it, seeing the world, discovering new places. And when they talk wistfully about their adventures, about how they wish there were more ahead, it breaks my heart.
When I'm lucky, the guilt I wear like coat of iron, uncomfortable and wearying, abates. It helps that every time my dad hugs me goodbye at the airport he tells me how proud he is of me for working so hard to make my dreams come true. My mom, during the times her thoughts are clear, says she's happy I'm following in her footsteps, experiencing our beautiful world and all the marvels in it. I get my wanderlust from my parents, and I know I honor them with it. I just wish I could take one more trip with them, the way my brother and I did when we were young. I just wish there were a hundred hours in the day for me to get everything done. I just wish, I guess, that there was more time.
Are you the primary caregiver for your aging parents? Have you ever taken a solo vacation as a means of self-care? What do you think of the concept of daughter care getaways? Join the conversation on social media by using the hashtag #thiswomansday.
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