A life of care with Mary Berk

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Life has few experiences more daunting than watching a loved one slip into the throes of dementia or become immobile after an accident. Caregivers must be there to oversee the minutiae of that person’s daily life. It’s a thankless and emotionally challenging role.

Mary Berk wants to guide you through it.

A certified health coach, Berk is more than just a counselor who works in the abstract. Her work in helping to facilitate the conversations around caregiving is deeply personal, stemming from her own experience caring for her mother beginning in 1999 until her death in 2001, then for her ex-husband, Brad Berk, former CEO of Strong Memorial Hospital, who became a paraplegic after a cycling accident in 2009.

For Berk, the struggle to accept the role of a caretaker begins with some tough conversations and dealing with the emotional challenge of taking on a new relationship.

“The challenges for me were much more around the emotional piece of things, and that’s one of the things I really want to focus on with families,” Berk said. “The family dynamics inform everything that happens in caregiving, and very few families can breeze through this process. Lots of older issues that they may have had can get revived. There can be differences among family members about what should be done.”

For family members diagnosed with dementia, one of the things Berk promotes is filling out a test sheet going through the person’s likes, dislikes, history and preferences for when they no longer can make cognitive decisions, dubbed a “life review.” It’s included in her book “Caring Well: A Planning Book for Caretakers.” That can be both a time to learn things you may have never known about a family member as much as it can be an emotionally taxing experience.

“I think that the key to this is that it’s not going to be great—there’s no big fix,” Berk said. “There are small improvements that can change the trajectory of how you’re caring for somebody.”

Many who have never been a care-giver before may see the role as something rare or unlikely. But the reality is, your odds of becoming a caretaker are pretty high. According to a 2015 report from the AARP Public Policy Institute, an estimated 39.8 million Americans provided unpaid care to an adult over the course of 12 months.

When Berk began caregiving for her mother, she was far from immune to the challenges, even after a career in family counseling.

“There was sadness. I missed who she was, and there was confusion. I wasn’t comfortable with this shifting role,” Berk said. “There were things she was doing that I was not comfortable with, but she was totally competent and those were her decisions. And I didn’t think it was my right to stop her.”

Berk’s challenge was to approach a new mother-daughter dynamic in a way that she now promotes to her clients. She learned it is not a shifting role in the sense that Berk became the mother and her mother the daughter. She considered it vital to preserve their relationship to the best of her ability.

“I think a lot of people do think of it as trading roles, but I don’t like to put it that way,” Berk said. “No matter what, this person is still your parent and they deserve the same respect that you would have given them before.”

That was, of course, an emotionally exhausting conclusion for Berk to come to. But it’s one she now preaches at every opportunity. She sees, from her own experiences, a need to confront these issues head on.

“I just want to be able to facilitate these conversations,” Berk said. “I want to get people to open up and talk about what can be a very difficult situation. It’s a very emotional subject, but if you don’t talk about it, if you don’t make a plan beforehand, those mistakes are almost guaranteed to happen.”

Berk herself is not bogged down by the emotions of her work. That can be difficult when dealing with some of the most dismal parts of the human experience day in and day out. She’s active, rowing and cycling in the summer and taking up every chance to travel. She is a mother of three and a grandmother of four, soon to be five, grandsons. Berk speaks with a tone of true concern, comforting like a warm cup of tea, and her passion for her work is obvious.

But Berk’s kind veneer should not be mistaken for naivety. In a podcast posted on her website, Berk talks about a lot of challenges caregivers face, including ones that are extremely sensitive. For instance, what do you do when the person you are in line to care for is someone you do not want to care for? What if it is an estranged family member you simply do not like? Those are circumstances caregivers can easily find themselves in, and that is a particular challenge.

“Guilt is such a part of this whole thing. Everyone feels guilty, you’re never doing enough, everything is not enough, every decision is the wrong one,” Berk said. “Let’s say mom says ‘I want to stay at home, forever, until I die.’ You have the opportunity to say we can do everything in our power to keep you home, but if we don’t have the ability to care for you, we may have to look at some alternatives.”

If there are any takeaways from Berk’s insight, it is to be blunt. Have those difficult conversations and say the things that need to be said.

“One person told me the other night, ‘all the options suck (and) some suck worse than others,'” Berk said. “I think what I really stress to families is the family to have those conversations. Remember when you had ‘the talk’ with your teenagers? This is ‘the other talk.'”

[email protected]/(585) 653-4022

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 Mary Berk

Company: Mary Berk Wellness

Town: Pittsford

Age: 68

Education: B.A., English and communications, Colorado Women’s College; master’s degree, social work, Boston University

Family: Daughters, Moriah, Sarah; son David; grandsons Anthony, William, Joseph and Andrew

Hobbies: Rowing, cycling and traveling

Quote: “Remember when you had ‘the talk’ with your teenagers? This is ‘the other talk.'”