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Finding One’s Way As a Caregiver

Advice for new caregivers

When Tina Lewis’ mother became ill, life became tumultuous and exhausting.

Not only was her mother suffering, but Lewis, an only child, was suddenly a caregiver tackling numerous challenges. The first was simply figuring out what was wrong. Initially some doctors thought that depression might be the cause of her mother’s difficulties, but Lewis knew that wasn’t the case.

She told them, “You’re not listening to me. This is not depression. This is something else. Depression is part of it, but this is something more serious.”

Eventually during a 10-hour emergency room visit, which included a multitude of tests, her 61-year-old mother received an Alzheimer’s diagnosis. The degenerative illness meant Lewis’ life became wrapped up in finding a safe home for her mother. She had to work out financing and find a caring place—all of which took time and meant encountering many bumps along the road, including her first choice of a home, which turned out to be not the good place she had thought.

“I had to network,” said Lewis, a naturally private person. “I had to open my mouth and talk to people…. If I had not done that, I would not have found this place she’s at now. To this day, I’m eternally grateful for it.”

During the first three chaotic years of her mother’s illness, Lewis had to stop working full-time, because she never knew when she’d have to step away to help her mom. Even after finding a safe facility for her mother, Lewis responsibilities have remained demanding as her mother regularly has emergencies that require Lewis’ attention.

Still, “my mom is now doing really well,” Lewis said. “She’s stable, I can breathe now…. I can try to have a little more normalcy—some resemblance of a normal existence, not just as a caregiver.”

Along the way, she has learned a number of lessons and is still working on skills that she knows would help her. Below are some tips from her journey:

LESSONS LEARNED

Keep Moving Forward
Although sometimes it’s tempting to wallow in the miserable aspects of the situation, Lewis has learned to pick herself up and move forward with her life. “If I sit up here and cry all day, what is that going to do?,” Lewis said. “She’s still going to have Alzheimer’s.” Of course, sometimes sadness overtakes her, but after the storm passes, she keeps moving forward.

Share the Issue at Work
Lewis, who has chosen to work on a contract basis for flexibility, always lets employers know that although her mother is in a “wonderful home,” as her mother’s caregiver and power of attorney, at any time, Lewis may need to assist her. “If someone can say, ‘I’m six months pregnant, and I may have to take maternity leave,’ why shouldn’t I say, ‘my mother’s sick and I may have to leave to care for her?’”

Relax and Appreciate the Good
With Alzheimer’s, loss is part of the diagnosis. Lewis’ mother can no longer have a conversation with her, and it’s hard to lose that connection. At the same time, Lewis reminds herself that her mother is happy and loved and getting the attention she needs. “I have to just stop and just be grateful for the positive things that have happened,” Lewis said. “I don’t know how long she has, but I don’t worry about it. Whatever is going to happen, is going to happen. I’m not going to sit there and drive myself crazy.”

Recognize Need for Change
For Lewis, becoming a caregiver meant growing. She experimented with support groups and took coursework to become a certified support group facilitator. She located an organization, Alzheimer’s Greater Los Angeles, that provided both assistance and guidance, which has helped her journey. She also learned to speak up for herself and her mother, although she still struggles both to take care of herself and ask for help.

She wishes she could tell other caregivers who also have trouble asking for help, “You’re not alone. There are hundreds and thousands of us out there that could be supporting one another, but no one wants to open their mouth and say, ‘I need help.’ Don’t be afraid to ask for help.”

Kathi Koll is the founder of The Kathi Koll Foundation and author of Kick-Ass Kinda Girl: A Memoir of Life, Love and Caregiving. Please visit KathiKollFoundation.org or KathiKoll.com to learn more and read an excerpt.

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