Sandwich Generation: Young Mom Became Caregiver to Her Dad With Alzheimer’s

Rachael Piltch-Loeb was always excited for her dad to become a grandfather.

He was the picture of longevity, pursuing hobbies like basketball, biking, tennis, and playing the guitar. Most of all, he loved kids: after building a career as an architect and general contractor, he decided to become a middle-school teacher in his 40s, while still raising his own children.

“He was calm, he was cool, and he really led with empathy,” Piltch-Loeb told Business Insider. “He didn’t need to be the loudest person in the room, but when he spoke, you wanted to hear what he had to say.”

Six months after Piltch-Loeb gave birth to her first child, her father was diagnosed with early-onset Alzheimer’s at 58.

She was now part of the “sandwich generation,” needing to care for her child and a parent at the same time. Aside from figuring out the logistics and costs of balancing both responsibilities, she also had to process her grief, watching her father slowly slip away. He died at 62, a little over three years after getting diagnosed.

“There was so much anxiety, so much sadness, and so much unknown when that diagnosis came,” she said. “It was an overwhelming feeling.”

A difficult role reversal

The diagnosis confirmed what the family deep down knew, after witnessing signs of his decline even before his grandson was born.

Piltch-Loeb has a vivid memory of her parents traveling from Boston to New York City to meet their grandson. Her mom drove because her father, normally great with directions, started to get lost on the road. At intersections, it would take him a moment to realize the light turned green.

“My dad was huffing and puffing as he arrived at the hospital because he hadn’t been the one to drive,” she said. “He was always the driver in the family.”

At the time, the family suspected he was going through some cognitive decline; he’d had a stroke at 54, which can cause lasting brain damage. As his symptoms progressed, they suspected Alzheimer’s.

“Once the label was there, there was no turning back,” Piltch-Loeb said. Because Alzheimer’s progresses more quickly in people under 65, her father was given a five-year horizon of life.

“It was kind of this pit in your stomach, this dreaded feeling that the end will come, and it will come a lot sooner than you’re prepared for,” Piltch-Loeb said.

Post-diagnosis, the family had to adjust to a new normal. While family gatherings used to be joyful and relaxed, they became more about scheduling and management. Who was keeping an eye on Dad? Would a public place be too overwhelming for him?

There were also limitations in how her dad could interact with her son. Over the coming months, his hands started to shake when he held his grandson. By the time her son became a toddler, capable of moving around more, her father’s decline had progressed. She realized she couldn’t leave them alone together.

Part of Piltch-Loeb’s grief came from no longer being able to lean on her dad for support. “I really miss having him just listen, or having a brief conversation with him to hear his thoughts,” she said.

Still, she said she was able to share some sweet moments with her dad and son. “When I look back at all those memories, he’s the one on the floor with him as he’s learning to pick his head up, encouraging that mobility,” she said. “He’s the one pushing him in the stroller or holding him in the baby carrier.”

Supervising her son and dad

Piltch-Loeb felt lucky that her dad had a huge support system: her mom and two siblings all participated in caring for him. Meanwhile, Piltch-Loeb and her husband traveled back and forth from New York to Boston as often as they could.

But her situation felt unique in the family. She was the only one with a very young child and had to split time between being a caregiver to him and a parent with Alzheimer’s.

The parallels in caring for both were stark: Both son and father had “this perception that they can do a lot more independently than they actually can,” so she would need to find the right balance between setting boundaries and letting them have some autonomy.

They also needed to be supervised in similar ways. While she needed to feed her son, she also had to remind her father to eat, sitting with him to make sure he did it. When watching her son or father wash their hands, she had to make sure they turned off the sink. Once, her parents’ house had a minor flood because her dad left the sink running.

In taking care of a parent, “you recognize that these are things that they did for you, but it is heartbreaking to do that for somebody who you previously recognized as just so capable,” she said.

How to get by in the ‘sandwich generation’

As millennials now reach their early 30s and mid-40s, they’re taking on new roles. For some, like Piltch-Loeb, it involves simultaneously navigating parenthood and caretaking.

Piltch-Loeb, a public health academic, was inspired to write her book, “The Millennial Caregiver,” a guide on how to handle the practical and emotional challenges of being a dual-caregiver. While there were plenty of resources on Alzheimer’s, she didn’t feel there were many tailored to her experience.

For one, her father was younger than the average Alzheimer’s patient: when her mother attended support group meetings, she noticed everyone else was decades older than her. Financially, caring for him became complicated. Because he was under 65, he didn’t qualify for Medicare, which could pay for some of his treatments. He also didn’t have long-term care insurance, so extra services like speech or music therapy were all out of pocket.

“You want desperately for the person who is impacted to just be themselves for a little bit longer,” she said. However, paying for supplemental therapy can be a huge financial burden, impacting retirement savings.

It was also difficult to know how to talk about the experience. When someone asked her how she was doing, she didn’t know what to say.

“He can’t use the bathroom by himself, the sink is flooding, he needs to be fed, he’s wandering outside,” she said. “How much detail do you think folks really want?”

Piltch-Loeb said the experience taught her to manage her expectations and focus on what were absolute priorities — in her case, focusing on her son and father. Above all else, she learned to “let go of that desire to predict and plan everything perfectly.”