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By Linda Bausch
One thing is certain, from birth to the end of our days, we will have either been cared for or have given care to another. Many times, around-the-clock care happens at home, and the responsibility for caregiving and companionship, falls on a family member.
I know a few people who have not only cared for at least one loved one . . . but multiple loved ones, sometimes sacrificing years of their own lives. I consider these people angels among us. There is no question that they each have something special inside, that allows them to take on the sometimes rewarding and sometimes heart-heavy tasks of the day-to-day care of someone they love.
One lady I know has cared for both of her in-laws, at the same time, for years—both are bed-ridden and physically dependent. Another person I know has cared for numerous of her loved ones, consecutively, beginning about 20 years ago with her maternal grandmother. Soon after that loved one passed, her husband’s grandmother lost the capacity to care for herself, and she moved in and was lovingly cared for, 24 hours a day at their home for years. Not long after that, another very close relative of the same friend was in need of almost daily care as he awaited a major organ transplant. Without question, my friend learned how to properly care for him—at home. As if all those situations weren’t enough for one person to handle, my friend then assisted both of her own parents through illness, and the end of their lives—one after the other.
I cannot imagine the strength it took for her to care for so many loved ones for such a long stretch of time. Occasionally, there was support from Hospice, which was much appreciated. Our family and friends may share their day-to-day experience caring for others with us, there is so much of what they encounter that may never cross our minds until we may find ourselves in the same position.
Another dear friend of mine, Lynn Abaté-Johnson, from February 2011 to May 2017, cared for her mother, Rosemary Ann Hakim, (known to family and friends as Rah-Rah or RAH), as she faced a long, protracted illness caused by cancer. RAH was a strong and smart woman, determined to make her best effort to thrive and survive. Lynn was going to do all in her power to help her mom through.
To help keep family members informed of doctor’s visits, test results, and RAH’s day-to-day needs and routine, Lynn began to keep a journal. Putting pen to paper, writing almost every day, Lynn detailed their journey resulting in the culmination of a recently published book, “Out of Love: A Daughter’s Journey with her Mom to the End.”
This book is an excellent primer for anyone who has become or may become a caregiver, in which Lynn addresses: “…your fears, anxieties, conflict, joy, humor, doubt, rage, sadness, anger, guilt, and more.” On the pages, the reader is taken from Lynn’s ‘deer-in-the-headlights’ situation, to becoming a loving caregiver, writing with a commitment to others “to having them feel comforted by knowing I’m with you there in spirit, at your service.”
Filled with many thoughtful reflections and suggestions, the book
may help a caregiver feel as though they are not completely alone—a common occurrence for someone who may be involved in another’s care, 24 hours a day. As one person I interviewed shared his thoughts with me, he spoke of being responsible, yet powerless at the same time.
Lynn writes about the importance of managing expectations . . . when it comes to these situations, there is no control. If you feel the need to ‘control’ something, Lynn suggests that you . . . “Make a list.” Trusting your instincts is something that will also be of great help. At the beginning of RAH’s illness Lynn didn’t yet trust her gut. As time passed, she learned that when she, “listened to her body, heart, and soul,” she was able to, “get out of her head and move into a place of trust.”
Humor was at the top of the list when it comes to managing the stress of caregiving. Learn to laugh and normalize the funny stuff. One of Lynn’s friends commented on something Lynn had written in the journal one day . . . “These journal entries are better than TV or the Comedy Club! How you interpret for us in print the humorous moments in a day filled with challenges! It’s beyond me! I feel so blessed to know you, RAH and your amazing family of angels.”
During one of RAH’s hospital stays, Lynn seeing her mom fall from the toilet into a trash bin was one of her most hilarious memories, Lynn’s journaling reminds us. “Laugh when you can—anytime you can.”
Just getting enough sleep is a challenge, as well as, depending on your own personal strengths and giving others room to step in to help when you feel exhausted. Navigating guilt must be one of the more difficult things for a caregiver. Not to mention that the ‘feeling of relief’ is absolutely acceptable when a loved one has succumbed to an illness.
There’s a section called “Further Inquiry” at the end of each chapter which provokes self-reflection and an opportunity for the caregiver to see a bigger picture, not only for the loved one, but for the caregiver’s own sense of well-being. I found this helpful as Lynn encourages the reader to take her experience and use that as a springboard to address thoughts, concerns and questions any caregiver may have.
Lynn’s journey began taking care of her mom, but she also found herself being led down the road of self-care. A life-long desire to take better care of her own health became the focus of the past couple of years and resulted in a well-rested, healthier and more personally joyous outcome for Lynn and her husband, Corey, who took the leap of faith with her and stepped into a future of health and self-care.
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