Generation of sandwich: young mother became a caregiver for her father with Alzheimer’s disease

Rachael Pitch-Loeb was still delighted that his father became a grandfather.

It was the image of longevity, pursuing hobbies such as basketball, cycling, tennis and guitar. Above all, he loved children: after having built a career as an architect and general entrepreneur, he decided to become an intermediate school teacher in his forties, while raising his own children.

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

Six months after Pilch-Loeb gave birth to his first child, his father was diagnosed with an Alzheimer’s first time at 58.

She was now part of the “sandwich generation”, needing to take care of her child and a parent at the same time. In addition to determining the logistics and the costs of balancing the two responsibilities, she also had to treat her sorrow, looking at her father slowly escape. He died at 62, just over three years after being diagnosed.

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

A reversal of the difficult role

The diagnosis confirmed what the family at depth knew, after witnessing signs of its decline even before the birth of their grandson.

Pilitch-Loeb has a living memory of his parents traveling from Boston to New York to meet their grandson. His mother led because her father, normally brilliant with the directions, started to get lost on the road. At the intersections, it would take a moment to realize that the light became green.

“My father was blowing and blowing when I arrived at the hospital because he had not been the only one to drive,” she said. “He has always been the driver of the family.”

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

“Once the label was there, there was no turning back,” said Pilitch-Loeb. Because Alzheimer progresses faster in people under the age of 65, his father received a five -year life horizon.

“It was a bit of this pit in your stomach, this feared feeling that the end will come, and it will come much earlier than you are prepared,” said Pilitch-Loeb.

After the diagnosis, the family had to adapt to a new normal. While family gatherings were happy and relaxed, they became more on planning and management. Who had an eye on dad? Would a public place be too crushing for him?

There were also limits in the way his father could interact with his son. In the coming months, his hands have started to tremble when he held his grandson. As his son became a young child, capable of moving more, his father’s decline had progressed. She realized that she could not leave them alone together.

Part of the pitch-loeb sorrow came to no longer be able to rely on his father to obtain support. “I really bother him listening to him, or having a brief conversation with him to hear his thoughts,” she said.

However, she said that she had been able to share sweet moments with her father and son. “When I look at all these memories, he is the one on the ground with him when he learns to take the lead, encouraging this mobility,” she said. “It is he who pushes him into the stroller or holding him in the baby carrier.”

Supervise his son and father

Pilitch-Loeb was lucky that his father had a huge support system: his mother and two brothers and sisters all participated in the care of him. Meanwhile, Pitch-Loeb and her husband traveled from New York to Boston as often as they could.

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

The parallels by treating the two were austere: the son and the father had “this perception that they can do much more independently than they really can”, so she would need to find the right balance between fixing limits and let them have some autonomy.

They also had to be supervised in a similar way. When she had to feed her son, she also had to remind her father to eat, sitting with him to make sure he did it. Looking at her son or her father washing her hands, she had to make sure that they turn off the sink. Once, his parents’ house had a minor flood because his father left the sink while running.

By taking care of a parent, “you acknowledge that these are things they have done for you, but it is heartbreaking to do it for someone you previously recognized as if capable,” she said.

How to manage in the “sandwich generation”

While millennials now reached the 1930s and the mid -1940s, they assume new roles. For some, like Pilch-Loeb, it is a question of navigating simultaneously on parenting and the goalkeeper.

Pilitch-Loeb, a public health academic, was inspired to write his book, “The Millennial Caregiver”, a guide on how to manage the practical and emotional challenges of being a double career. Although there have been a lot of resources on Alzheimer’s disease, she did not think there were many personalities at her experience.

On the one hand, her father was younger than the average Alzheimer’s patient: when her mother attended support group meetings, she noticed that everyone had decades more than her. Financially, the care of him has become complicated. Because he was under 65, he was not eligible for Medicare, which could pay some of his treatments. He also did not have long -term care insurance, therefore additional services such as speech or music therapy were all of their pocket.

“You desperately want the person impacted to be a little longer,” she said. However, payment of additional therapy can be a huge financial burden, which has an impact on retirement savings.

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

“He cannot use the bathroom by himself, the sink floods, he must be nourished, he wanders outside,” she said. “How many details do you think people really want?”

Pilch -Loeb said that experience had taught him to manage his expectations and focus on absolute priorities – in his case, focusing on his son and father. Above all, she learned to “abandon this desire to predict and to plan everything perfectly”.