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What It's Really Like Caring For A Parent With Dementia

He was slipping away from us, little by little, day by day.

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Deflated white balloon blowing out dust with a print of a brain on the balloon.
Claire Benoist/The Licensing Project
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“I wish I was an only child,” I said, sitting on the floor in my sister’s Missouri home, days into my federal leave from work to take over as Dad’s primary caregiver. Dad, a retired plumber, lived near St. Louis with sibling number four. I was number five, the baby, a 42-year-old single New York lawyer who hadn’t been home for more than a few weeks since I left for grad school. Before my father’s decline, I’d been his personal travel agent, coordinating his many trips. I never thought I’d need a three-month leave of absence to help care for him.

Surrounded by papers I’d pulled off his bedroom floor and from his dresser and under the mattress, I cursed. I was angry my mother was dead, my father had dementia, and my four older siblings hadn’t organized his affairs. My 86-year-old father’s finances were worse than I’d anticipated. One so-called buddy had opened an investment account and lost Dad’s money. Another was taking him to the bank when money had vanished. A third friend helped him trade guns, ammunition and equipment to Dad’s financial loss. Handwritten notes on envelopes hinted at transactions.

He had five life insurance policies, including one he’d just ordered over the phone. His will had typos, his power of attorney forms weren’t filed, and his end-of-life plans weren’t even addressed. “What’s wrong with my baby?” Dad yelled from the kitchen while I ranted. He sat drinking coffee and reading obituaries, announcing which dead guys had flags, indicating they were veterans since he was a disabled-Army guy himself. Dad mumbled to no one, “I was married 51 years and four days to a beautiful Irish girl.” Mom had already been dead six years. “I have a lot to fix while I’m here,” I said.

When I’d danced on Broadway in my 20s, Dad was my biggest fan. Now at the table, he blew me kisses and told me to smile. I couldn’t, too saddened that he’d become a 4-year-old before my eyes. My first week in Missouri, Dad and I had coffee every morning. I cooked him steamed vegetables and salmon for dinner each night. I wanted to provide him a change from the frozen meals my sister Tish had stacked in the freezer and give her a break. Tish said, “I feel like I’m on vacation.”

Over the following weeks, my oldest sibling, Mary, took Dad to shows. I prepared documents for his lawyer, called a financial regulator to report his new investment account and researched senior homes. After a semiautomatic pistol fell from Dad’s pocket onto my foot, I got his membership at the shooting range pulled. I helped Dad insert his newly fitted dentures and fixed his shirt because the buttons had become “too slippery.” Dad asked for assistance by holding out his arm.

One night after cleaning Tish’s kitchen and serving Dad ice cream, I asked her to drive me to Mary’s house, where I was staying. “I’m exhausted. This is way more work than I’d planned,” I said. “You’re telling, me? I’ve had Dad for six years,” Tish said. “And Dad’s a mess!” I rattled off Dad’s financial, legal and medical issues I’d tackled since arriving, and then there was his dementia. “They’re trying to bury me,” Dad repeated, despite my explanations that we weren’t. The frequent hugs he gave during week one had ceased once I blocked his excessive trips to the bank. When Dad was mad, he called me “the lawyer,” I told Tish. She drove me to Mary’s, and we discussed potential senior communities for our father. As we spoke, I started to realize that Dad’s situation was too much for my siblings while they worked and raised their children.

Dad was a full-time job, one that I had for only 12 weeks and without my usual life pressures. A month into my leave, after I sent many texts for help, our brother Robert spoke to Dad’s conniving friend, telling him “No more deals. No more guns.” Our other brother Joe, an Iraq veteran, came to take Dad to the local Veterans of Foreign War hall for a root beer. I asked Joe to visit an elder community with me. He did, and after many discussions with Dad, we put down a deposit. Weeks later Dad’s social worker at the Veterans Administration called, saying Joe had scheduled appointments for Dad with the geriatric team. Dad’s psychiatrist did a detailed intake and conducted tests. Dad interrupted. “I met the president. The movie star. I was in his motorcade.” It was one of his stock stories.

The doctor reminded him to answer the questions, but he couldn’t remember how. She asked him to draw numbers on a clock and mark it with the time “ten past eleven.” He failed that, too. Later, he couldn’t recall the name of the last commander in chief. “The black one,” Dad said. For the one before Barack Obama: “His dad was president, too.” I bit the inside of my cheek as Dad struggled. Joe and I glanced at each other.

Those looks were my lifeline, helping me not to scream. I wanted to wrap my arms around my father and assure him he was fine, just a little tired and confused. But he was slipping away from us, little by little, day by day. Joe and I left with a letter from the doctor stating Dad was no longer capable of handling his finances.

Back at his new senior residence and to my shock, Dad turned over his credit cards to Joe without protest. When Dad went to dinner in his community dining room, Joe and I left. “Today sucked,” I told Joe in the car. “I couldn’t have done that on my own.” “It was good that we went together,” Joe said, staring out the window. I wanted to hug my big brother. But instead, I said, “Let me buy you dinner,” grateful I wasn’t an only child after all.

It has been 19 months since Dad moved into his senior community, and over a dozen since I quit my job in New York and returned to Missouri, now living just minutes from Dad’s home. Every day, I’m reminded how lucky I am to have siblings. Joe has assumed the majority of the responsibilities needed to care for our father. He manages Dad’s finances, protects him from predators, and ensures he gets his medications. Meanwhile, Dad has been my copilot as I learn to navigate my new neighborhood, and Joe has become the shoulder upon which I can lean for support as we watch Dad’s dementia rob him of his mental capacity and us of our father.

Caring for a relative or friend? AARP can help.