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A Long Island Family Caregiver Shares Her Story

Updated: Jul 4, 2018

It’s been said that to care for those who once cared for us is one of life’s greatest honors. Being a family caregiver to a parent gives one the opportunity to return the gift of love, support, and compassion that only a mother or a father can give to a child; but it also comes with a level of responsibility like no other. Janice Bergen, like many caregivers, provides daily assistance to both her parents and knows all too well that this honor to care for those who once cared for us comes with its rewards and its sacrifices.

Janice’s caregiving journey started two years ago in the spring of 2014 when her mom was not behaving like herself. “Mom normally called me to check in and that changed to me calling her to see how she and my dad were doing”, said Janice. “Then, mom seemed to start ducking my phone calls.”

When her mom got the news that Janice’s brother needed a liver transplant her reaction seemed off. “I thought she was just in shock”, recalled Janice. “Friends started telling me that mom doesn’t seem right”, explained Janice. Her parents were snow birds and spent the winters in Florida. “When they got off the plane in the spring of 2014, dad was in a wheelchair and mom looked lost”, recalled Janice. Janice knew that something had changed and both her parents were no longer the same.

Janice took her mom to a doctor to get evaluated. The results from the tests found that mom had Alzheimer’s Disease. Janice’s grandmother (her mom’s mother), had the same thing. It all started to make sense, and as her mom’s needs were growing, so were her dad’s. Between the spring and fall of 2014, her dad had thirteen hospitalizations due to falling and other medical complications.

“Mom was still driving at the time of her diagnosis but then had a minor unsafe incident while driving and had to stop”, recalled Janice. Janice’s caregiving responsibilities were quickly becoming a daily commitment. While her parents’ needs were spiraling, Janice was experiencing her own health concerns. “I went to have a skin condition checked out and on September 1, 2014 I was diagnosed with stage one rectal cancer”, explained Janice. In February 2015, Janice began chemotherapy treatment for six weeks.

“I would drive myself to chemotherapy treatment and bring a bucket in case I got sick on the ride back”, Janice explained. “From chemotherapy I would pick up my daughter from school, Samantha, to take her to her after-school programs while managing the sickness from the chemo”, said Janice. Janice quickly started to realize that she could not do this alone. “My ex-husband took over the driving for Samantha and I hired a caregiver to help with meal preparation and chores”, said Janice.

“When my brothers called my parents to see how they were doing, my parents would always reply that they were fine. The truth was that they weren’t fine”

Janice had many learning lessons in that first year. The first was involving family members, even when they resisted. “When my brothers called my parents to see how they were doing, my parents would always reply that they were fine. The truth was that they weren’t fine”, said Janice. “I started sending group texts to give my brothers updates so that they would know the facts and stay connected”, explained Janice.

Janice also enrolled her mom in a daycare program in Mattituck called Katinka House. While mom was very uneasy with this change in the beginning, she adapted and enjoys attending the program every day.

Janice has learned to adapt to her new role as caregiver to her parents and shared some of her best strategies for the everyday challenges that she encounters.

If anticipating doctor appointments, special events, or other upcoming plans causes your loved one too much anxiety, get rid of the calendar. “I learned that keeping a calendar posted with all the upcoming appointments did my mom a disservice. Due to her dementia, she would fixate and ask repeatedly about what was happening next, or tomorrow, or later on. Now, I tell her where we are going when we are on the way there”, explained Janice.

Keep a bag packed with your loved one’s “go to” comforts or favorite activities such as, a light jacket, a hat, a word search game, etc. “I also keep a loaf of bread in my bag to feed the seagulls at the beach when my mom and I go out. This gives her a chance to relax and have a distraction before going to daycare or on the way home”, said Janice.

Know your loved one’s schedule. “We do not go out at night because mom has sun downing syndrome. Also, I shower my mom on certain days when I know we won’t have to rush. I’m very methodical when with my mom and keep to the same schedule every day”, explained Janice.

Janice also has found ways to care for herself. Support groups, talking to family and friends, bicycling, and taking time for herself when it’s most needed are some of the ways she copes with the stress. “Something as simple as a cup of tea or taking a moment to splash cold water on my face can help me collect myself”, said Janice. Focusing on the rewards of caregiving, such as, watching her mom’s happy expression when she’s dancing at an event, seeing her mom socializing with others and having a good time, and when her mom expresses gratitude for Janice’s help, reminds her of what it’s all for.

By Jennifer Benjamin, Family First Home Companions


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