En español | Until I became one myself, I associated the word “caregiver” with nursing shoes, some kind of formal training and the ability to administer a shot or change an IV line.
While those qualifications may be true, the reality is that caregiving has many faces. And behind each person is a story, a piece of advice, a pearl of wisdom or some nugget that can connect and carry us through the hard days. Shared experiences and stories are what help us feel less alone and isolated. They give us the juice we need to put our feet on the floor and attack the day.
Carol Roche's husband Dave was diagnosed with multiple sclerosis (MS) at 61 and in the five years since he has progressed to using a walker at home near Milwaukee. She went from caring for her mother-in-law with dementia, to becoming caregiver for her husband, all of which has turned her into what she describes as an accidental activist. Carol has learned volumes about MS and how to manage it, as well as how to fight for parity, including handicapped parking spaces in her town and registering her husband as a “fall risk.” What can others do to ease the burden? “It would be nice if people reached out to help more. We have a great list of friends, but people feel like they are intruding or don't know how to offer. When friends ask what they can do, my answer is, be there to help before I have to ask. It's hard to be the one always asking for help."
When my husband, Bob, was recovering from traumatic brain injury (TBI) one of the best pieces of advice I ever received was to subscribe to the “chit system.” At the beginning of a crisis or diagnosis, everyone swoops in and wants to help in the midst of chaos. Give each person a verbal chit and tell them you'll circle back when you have an idea or item with which they can help. Using that advice, I was able to call on friends who were thrilled to have a tangible way they could help, from fixing a broken hot water heater to giving rides to soccer practice or picking up an extra grocery item. It enabled the “givers” by allowing them to do something useful.
Eleven years ago in Southern California, Susan Davis was thrust into the world of caregiving and brain injury at age 50 when an aneurysm left her now-wife in a coma. “Karen woke up like a 6-month-old baby, unable to care for herself or speak,” explains Susan. “Without a manual and on a limited budget I had to learn everything overnight — from medication, bathing and sourcing a caregiver — so I could return to work.” She soon learned the No. 1 rule of caregiving: “You're going to lose yourself if you don't take care of yourself."
Today, while Karen can walk, talk, sing and beat her at Jeopardy, short-term memory issues mean she cannot leave the house alone. Finding patience is one of Susan's biggest struggles, something we can all relate to. “I give myself a time-out,” she says. “I walk away, go in my office and sometimes I call someone and say I just need to go out and get a cup of coffee and a time-out.” She acknowledges that every time she walks out the door, “it equates to a check I have to pay someone.” Like so many caregivers she has to weigh the times and the level of importance in leaving the home. “You're on call 24 hours a day, whether you have someone at home with them or not. It all comes down to you.”
But through perseverance and incredible planning, Susan was able to go from small time-outs to earning two master's degrees on the East Coast. “I want everyone to know that anything is possible,” says Susan.
In 2017, Amy Moss was 44 when her 19-year-old son, Brandon, was shot in the head under circumstances that are still mysterious. His life was miraculously saved by doctors, but as a single mother, the real work began when he came home from his rehabilitation hospital. His challenges include loss of mobility and memory, and he has found it harder to connect with old friends, leaving him with a sense of isolation. The Moss family lives in rural North Carolina, where the challenge to locate the appropriate support services and assistance is even greater.
"I'm scared and anxious inside,” admits Amy. “But as his mother I have to find the balance to deal with his emotions and mine. Will he walk again? Will he be able to live independently? I try to let him vent and we do a lot of talking and praying."
Amy tried to join a gym in March, knowing that she needed to do something for herself, but even that was difficult since she still needs someone to stay with Brandon when she goes out. Amy would love to hear someone say, “Cry on my shoulder and let it all out.” And that's something I can relate to in my own journey, but too often we feel as if we have to be the strong one, the noble caregiver. “This is the hardest job I've ever had,” says Amy. “And if something happens to me, my son will be in trouble. I urge every caregiver to get their affairs in order."
When my husband returned home from the hospital and was still recovering from his brain injury, I have a moment that is seared in my brain. I was physically and emotionally depleted caring for him and four young children. I'd gotten them all out the door to school and Bob to his therapy and I suddenly collapsed on the couch, racked with sobs. I remember a flash of light behind my closed eyes and a deep, measured voice in my head telling me, “It's going to be OK.” I immediately felt a sense of complete calm.
To this day, I have no idea where that voice came from. Perhaps it was an answer to my prayers and my crazy anxiety over what our future would look like. But I will always remember that experience as some kind of turning point that kept me going for the rest of that day and beyond.
Do you have a moment when you were at your lowest ebb and someone or something changed your outlook or energy level? I would love to hear your story.