Reading: When Caregiving Disrupts Your Lifelong Plans

There we were…fresh from a “proof of concept” trip to Italy, where my husband Angelo and I began laying the groundwork to start living our lives in Connecticut, where a couple of my adult children still lived near our home, and also the small Italian hill town where Angelo grew up. Our nest was completely empty, fully swept out and slightly remodeled: a bedroom became a home office; we added two recliners to the living room. We were both self-employed and had flexible schedules. Yes, we believed we had proven the concept — we could seamlessly make the transition to live in both places and edge our way to retirement. We couldn’t wait to start.

We were (mostly) ready to initiate Operation Italia, making notes on the flight home about things we’d have to do to prepare our transition. Then, almost minutes after we touched down at JFK, I got a call that my 83-year-old mom was in the hospital. In Florida, with pneumonia, which turned out to be Stage 4 lung cancer. She died three months later, leaving my dad’s care in question, since none of his three kids (myself included) lived close enough to be available on a regular basis. As the oldest — and the one with the empty nest — the decision was made to bring Dad north to live with Angelo and me.

We wouldn’t be moving to Italy any time soon. 

From Empty Nest to Full Again
We remodeled the nest again…turning the dining room into a bedroom, since my dad couldn’t manage the stairs to any of the available bedrooms on the second floor. That meant we had to add a shower, too, which we installed in the space where our front hall closet was. He would use the downstairs half-bath as his, which wasn’t exactly private, but it was mere feet away from the new bedroom and he could manage that.

He arrived in our home as an 86-year-old diabetic, legally blind, bereaved widower with a heart pacer and the idea that he shouldn’t even be here at all. 

One of the biggest realizations I discovered after making the decision to take care of my dad in our home was that we thought he’d be living with us when, in reality, we were living with him. His needs, his schedule, his meals — his total care — directed our daily lives from the minute he moved in.

It took some time to figure this out — like when we went over to our office one day for a couple of appointments and left him on his own. “I’ll be fine!” he said, as we made sure he had his phone so he could call if anything came up. We didn’t stay long…less than a couple of hours, but when we returned, Dad was sitting on the floor, his (somehow scraped and slightly bloodied) back against the (white) sofa with a befuddled look on his face. I rushed over to him — “Dad! What happened?!” He had no idea. After that, we installed “dad cams” and took turns leaving the house. 

My dad wasn’t diagnosed with dementia before or after he moved in, only MCI — mild cognitive impairment — but I suspect he was further along on that spectrum than we knew. It was hard to tell, because he was such a smart and funny man, it never sounded like he was “losing it.” But because he was so smart, his anger at having to live with us showed up in defensive behavior and sarcastic barbs. I was at the business end of most of his unhappiness with — well, almost everything about his daily life. It wasn’t hard to understand why he was so unhappy, as a planner and our family’s main caregiver himself, living in his daughter’s dining room was absolutely not in the plan. In addition, because of his many medical issues, he was almost certain he would die first, leaving my mom to live an easier life for a few more years without having to take care of him.

He wasn’t angry at me, I knew that, but it wasn’t always so easy to distinguish when I got sneered at for helping him with his shoes or had an exquisitely pointed criticism delivered right to the heart. 

The Ups and Downs of Caring for Aging Parents
It wasn’t always easy and I didn’t always handle it well. I snapped, criticized, and pouted probably almost as much as Dad did. I tried to hide it, because I truly didn’t want to be that daughter who was making her dad’s life miserable, but I have to confess…I wasn’t always successful.

Maintaining a sense of humor was essential. One day, I had to leave a meeting that ran longer than expected and I was getting uncomfortable about the time ticking by because I had to go pick up my dad. I gathered my things and as I dashed out the door, I called back, “Heading to the funeral parlor now! Bye!” The faces of the women around the table looked horrified. They all knew about my caretaking situation so I guess my statement came off as a little morbid. But, in fact, it was true. I was picking up Dad to go switch his pre-planned cremation arrangements to a local place. It wasn’t morbid, it was funny! At least I thought so and I smiled all the way home. 

Taking on the care of an aging parent is not a case of, “Well, they took care of us, now it’s our turn to take care of them…” because the needs and the responsibilities — and even the outcome — is entirely different. Just the physical requirements for caring for an adult are very different than say, caring for a toddler. A 30-year-old woman picks up a 30-pound child almost with one hand. A 60-year-old woman has a lot more trouble trying to lift a 170-pound man off the floor, made more difficult if he doesn’t understand why he’s on the floor or maybe even bleeding a little bit. 

Angelo and I each had a very different experience during the four years — including a pandemic — that my dad lived with us. Even though Angelo took on much of the responsibilities of keeping him safe and cared for, the brunt of direct care was mine. 

I’m sure at times Angelo felt like he was in his own little nest next door to the nest where I lived with my dad. Fortunately, we both understood that Dad was not just the forgetful, slow, cranky, complaining old man that sat in his chair watching non-stop cable news or nodding off to sleep as he listened to books on tape. He was the man who was once all things to me, the smartest, most responsible man I knew. It wouldn’t have been fair to only see him how he was then, at the end. It was essential that we remembered his entire life and the whole person he was, for that was the only way to care for him.

It’s nearly the hardest thing we’ve ever done, not the least of which was because Operation Italia had to be put on the back burner. Most days it felt like it had fallen off the stove completely. 

After my dad died, we began to look at how we might resuscitate our lives — and our plans. However, unimaginably, just six months after my dad died, my daughter was diagnosed with breast cancer. No one was going to be moving to Italy while she was enduring chemo and treatment. We spent the last three years staying as close as possible and helped care for our 12-year-old grandson as she fought it until she died this past April.

The losses over the last five years have felt insurmountable. But, I hold close to my heart a lesson my dad taught me: Do the things you want to do when you can do them because you never know when that opportunity might disappear.

Make the plans, dream the dreams, take the chances. Move forward as if everything is going to work out as planned. And when it doesn’t…regroup and try again.

Operation Italia continues to inch forward, little by little, until we can get the plan back on track as we had initially envisioned. And, someday, we just might.

Cindy Eastman is the author of True Confessions of an Ambivalent Caregiver: A Memoir in Essays, which she wrote about her experiences caring for her ailing father. You can connect with Cindy on Instagram, Facebook, Threads, or Substack.