After being laid off from her job, she embraced the role of multigenerational caregiver for her parents and her developmentally-disabled sister.
Posted in , Nov 26, 2019
At 7 a.m., my sister Gail came waltzing into the kitchen in shorts and a sleeveless top—“Look at my outfit!”—even though it was a New England fall day in 2005. At 40, eight years younger than me, Gail was developmentally disabled and functioned at about the level of a six-year-old. “Let’s get you into something warmer,” I told her, and together we picked out jeans and a sweater. Gail launched into her usual morning complaint: “It’s not a good day to go to my program. I need to stay home to help you and Mom and Dad.”
“Your bus will be here in 20 minutes,” I said. Gail stormed out of the kitchen. Soon I heard the familiar slamming of doors all over the house. This habit used to drive me crazy, but now I just gritted my teeth and let her do it until she got tired of it. Sometimes I gave in and let her stay home.
After I’d gotten laid off from my job, more than two years earlier, I’d taken on the responsibility of caring for Gail and my parents. I shared a house with them, after all. My three other siblings helped out when they could, but they all had families and homes of their own. I thought I could handle being a full-time family caregiver, but I was completely drained. How was I going to make it through another day?
“Maryanne!” Mom called weakly from the family room. “You’ve got to get Gail out the door!”
I thought fast. “You can wear your pink scarf today,” I yelled out to Gail, who, temporarily mollified, ran to her room to get it. One small crisis averted. I fixed her hair and checked to make sure that she’d brushed her teeth. The bus driver honked outside, and Gail kissed Mom goodbye. One down and two to go!
Now Mom could have my full attention until Dad woke up. Three years ago, when she was 72, Mom was diagnosed with progressive supranuclear palsy (PSP), a fast-progressing disease similar to Parkinson’s, and she was now completely bedridden. Preparing Mom’s breakfast was complicated: First, I added a thickening agent to her coffee to make swallowing easier, then put her many medications into applesauce to help them go down smoothly. I carried the tray to her bed in the center of the family room, positioned so that she felt involved in all family activities. “Thank you for breakfast,” she said. “I’m going to need my hair washed today. And don’t forget to use the good conditioner.” I managed to give her the sponge bath in her bed without drenching us both, a skill that had taken months to master.
Just as I finished toweling her off, I heard Dad saying his morning prayers in his bedroom. Until I began staying home instead of leaving for work, I hadn’t realized that prayer was so much a part of his daily routine. This small act of my father’s was such a contrast to my hurly-burly, often impatient approach to life that it made me feel humble. The year before, he’d been declared legally blind due to glaucoma, so I listened carefully to hear if he was getting frustrated while dressing himself or maneuvering around his room. He also suffered from a seizure disorder, but he’d never lost his amazing sense of humor.
He liked to tell all of us, “I’m not a rich man, so I don’t have material goods to give you, but I can teach you to laugh.” Dad joked with me as he ate his doughnuts—“Nice to be here this morning. At my age, it’s nice to be anywhere!” The old-school comedians were his favorites: Rodney Dangerfield, Johnny Carson, George Burns and Gracie Allen. “Morning, Gracie!” he called out to my mother, as he did every day. After breakfast, Dad moved to his spot on the sofa in the family room, beside Mom’s bed. Hearing them laugh together, I thought back to the decision I’d made two years earlier.
A few months after I’d gotten laid off from my position as a manager at a computer software firm, I’d taken over the lion’s share of the household responsibilities. Mom’s motor skills were rapidly deteriorating, and she’d had more falls than I could count. The next one could be devastating. Dad was having an increasingly hard time getting around between the glaucoma and the seizures.
One balmy summer afternoon, Mom and I sat together in the family room, watching the sun streaming through the windows. “There’s something I need to talk with you about, Maryanne,” she said and took my hands in hers. “I’ve been thinking hard on this. It will be better for everyone if I go into a nursing home.”
At first, I was too shocked to speak. “That thought has never entered my mind,” I said. “I’ve been planning to hire a full-time caregiver for you all as soon as I find another job.”
Mom shook her head. “If I go into a facility, you’ll have only your father and sister to worry about.”
“I don’t know, Mom,” I said. “I’m going to have to pray on this.” I prayed about what to do for many sleepless nights.
A couple weeks later, after our nightly ritual of watching Jeopardy! together, I nestled close to Mom on the sofa. “Unless we can find a facility that will take all four of us,” I told her, “we’re staying put. I’m not hiring anyone to take care of you, either. I’m going to do it myself.”
“Are you sure about this?” she asked, worry in her eyes.
I looked right back at her and said, “Absolutely.”
From then on, I stopped looking for a new job and stayed home to care for all of them. I would do anything in my power to make sure Mom never spent a single night away from us.
As long as we were all together, we were happy, but my exhausting daily routine continued: doing the laundry, cleaning the house, paying the bills. Still, there was time for fun. That afternoon, we heard the thud of the mailman dropping something through our mail slot. “I got a new tape!” Dad shouted. Now that he could no longer read his beloved mysteries and thrillers, I ordered audiobooks for him every week from Perkins School for the Blind. “This one’s a Tom Clancy,” I told him. As usual, I’d bought the same book for myself in paperback so we could discuss it.
Gail came home at 4 p.m. Time for us to go on our daily walk before dinner. We strolled through the park, Gail peppering me with questions, as always: “What kind of dog is that?” “Is it a boy or a girl?” “How old is that baby?” “What’s the baby’s name?” I made up answers—the more fantastical, the better—because the truth was less important than the conversation.
When Gail sensed I was finally getting irritated by her questions, she would tell me a joke. Even though she usually messed it up, it was great to be reminded that she had the Curran sense of humor. Gail and I had bonded when she was just a toddler; I’d sit and hold her hand through her frequent outbursts of anger or frustration. In my family, I was known as Gail’s second mother, a designation that never seemed to bother Mom. When Gail turned 18, I was made her legal guardian, along with my parents.
I was even more tired by the time we finished our walk, but I told myself that if I could just make it to Jeopardy! at 7 p.m., things would be all right.
What to fix for dinner was a careful decision. It was usually a simple casserole with nothing difficult to chew, since PSP causes swallowing issues. Then it was finally time to sit down and watch Mom’s favorite show. Her wide range of knowledge made her a great Jeopardy! player. TV and movies were her best categories. “Charlie’s Angels!” she called out and then, for the next answer, “Clark Gable!” Although we didn’t actually keep score, she beat me every time.
After Jeopardy! if there was a Boston Celtics game on, Dad and I “watched” it together, with Dad listening to the announcer and keeping up a running commentary. Mom drifted off to sleep first. Then I tucked Gail into bed. Dad and I stayed up for a while going over the details of the latest chapter of the book we were reading. “Better keep an eye on that Russian,” Dad said. “Nah,” I told him. “I don’t think he’s really a spy.” These discussions were some of my favorite times I spent with my father.
I went to bed exhausted yet gratified, knowing I’d done my best to take care of the three people I loved most.
Mom passed on in 2008; after a series of strokes, Dad followed four years later. The first few months after my parents died were very strange for me. I don’t think I’d realized how much my caregiving duties for them had taken over my life. It was as if I suddenly had almost nothing to do to fill all the hours of the day and night. A few weeks after Dad died, I was clearing out his closets to send stuff to Goodwill. In the pocket of his favorite jacket, I found a scrap of paper with the punchlines to all his best jokes. Although he hadn’t been able to see for the last several years of his life, he’d carried his jokes, just in case. This reminder of my father’s enduring humor made me laugh and then made me cry. And though it’s now been more than a decade since Mom died, I still get choked up watching Jeopardy! sometimes when a category comes up I know she’d answer in a shot.
Only one person needs my care now: my sister Gail. When we go on our daily walks, she asks, along with her other questions, “Where are Mom and Dad?” Although heaven is a hard concept for her to understand, she seems content when I say, “They’re still close by.” I believe that caring for my family so we could stay together was God’s mission for me all along.
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