For much of the past 13 years, Rosemary Rawlins has found herself thrust into the role of family caregiver in a series of very different scenarios.
First, her husband, Hugh, suffered a severe traumatic brain injury (TBI) after being hit by a car while riding a bike in 2002 and underwent two years of arduous rehabilitation. Then, a year after her husband made a recovery bordering on the miraculous, Rawlins became a caregiver to her parents, as described in her prize-winning story below. And most recently, she helped her husband take care of his father through Parkinson's disease until he passed away last September, and is preparing to have her mother-in-law move in this spring.
Some might view her recent experiences as comparable to the biblical Job. But not Rawlins.
“I don’t see it as a terrible thing. I see it as a progression of life. It’s what families do,” she says.
However, Rawlins notes that it is not easy, either. “It’s difficult. I have so much experience now in caregiving that I can compartmentalize a little bit,” she adds. “I know how to take care of myself. I know that I have to take care of myself because I learned that with my husband. I fell apart a year and a half after my husband’s injury. I was just a total wreck. So I learned. It is a real skill that people can develop.”
Rawlins, who had spent her career working in human resources, began keeping a journal during her husband’s rehabilitation. When Hugh returned to work as a chief financial officer two years after the accident, Rawlins—who had always harbored a dream of being a writer—began writing a memoir on her experiences.
Her memoir, Learning By Accident: A Caregiver’s True Story of Fear, Family, and Hope, published by Skyhorse Press in 2014, recounts how she and Hugh rebuilt their relationship and their lives during the long and difficult rehabilitation process. The couple also were featured in the 2013 Telly Awards-winning video, “Relationships After TBI” and in a New York Times feature article.
Her second-prize winning story for “Better Caregiving, Better Lives,” the 2014-15 John A. Hartford Foundation Story Contest, (reprinted below) recounts what she learned caring for first her father as he slid into dementia, and then for her mother, who died in 2010 after two years of hospice care in Rawlins’ home.
“There’s so much fear about hospice and about end of life planning,” Rawlins says. “I saw the two scenarios with my parents, that my father didn’t really have a plan. Everything was in emergency mode because none of us were ready for it. And then with my mother, when we saw what he went through, we knew better. She just wanted to be at home. So that’s what we did. It was so peaceful, it was so different.
“I feel like that’s a very strong message to get out there, that people are afraid of the wrong thing. I think as hard as it is to talk about death, it’s harder to go through the dying process and not have any say about what’s happening to you when you’re most vulnerable.”
Rawlins, who edits and writes for the BrainLine Blogs, has become a passionate advocate for caregiving and TBI, speaking at conferences all over the country and testifying before the Virginia legislature.
One area that Rawlins believes deserves more support are psychological services for caregivers, which she calls “greatly underrated and underprovided.” She recalls how, during her husband’s rehab, a licensed clinical social worker “was just there at those crucial moments when I was really struggling and gave me some answers and resources I needed.”
And Rawlins says the story contest is “a really wonderful way of sharing information and educating people” about caregiving.
“I love reading stories about the way other people handle things, and I usually learn some kernel of truth from every one.”
Gratitude for End of Life Lessons
By Rosemary Rawlins
We learn a great deal from our parents by observing them—how to speak, walk, work, behave—but we don’t expect them to teach us how to die. Our culture clutches to life and shuns death, as if by shunning death, we can avoid it.
On June 1, 2010, my mother died peacefully in my home, in her own marriage bed. She passed away in the same week she enjoyed a cocktail and shrimp with her two sons; after laughing on the phone with her granddaughter in the morning over new puppy stories; after consoling my sister and me as only a mother can.
My mother’s peaceful death was a gift that followed the chaotic frenzy surrounding my father’s death. Dementia separated him from us. Dad’s sudden brain blockage uprooted my parents from their beloved home in New York and forced a hasty relocation to Virginia in crisis mode. I placed Dad in respite at an assisted living facility near my home until my mother could take care of all their affairs and find an apartment near me. But Dad was sicker than we thought. He never got out.
Mom was left hanging—homeless. We said she could live with us. She was wracked with guilt, but knew she could not handle my Dad’s zany behavior while confined to one room in a building full of strangers. Mom’s mind was sharp, her heart broken.
We visited Dad every day, and I’m grateful that he knew we loved him and he trusted us without question. But he was so far gone; he didn’t quite know where he was living. “My daughter has placed me in the finest five-star hotel in Virginia,” he boasted about his room in assisted living.
“And how do you like the wallpaper? I picked it out!” he’d say. I never corrected him. I’m a firm believer in whatever works—and this made him happy.
Every time I entered his room for a visit, he lit up. “Hi, Rosie Baby! So good to see you!” Not exactly the words of a dying man. He picked up my spirits on a number of occasions when I thought I was visiting to cheer him up.
Fortunately, Dad’s assisted living residence had several pianos and he was able to play old favorites for the residents to their delight. As his dementia grew worse, his music changed, and he warped the lyrics to fit his mood.
One day he began playing “I’ve Got You Under My Skin,” and he sang:
I’ve got me under my skin
I’ve got me deep in the heart of me
So deep in my heart, I’m almost a part of me!
In a strange way, this was his life. He did have himself under his skin. His old self, that is.
Another time, he mortified my mother when he started belting:
Please won’t you yank my doodle, Dandy….
The piano lid came down quickly. “Time for a rest,” Mom said.
And although Dad was great at party fun, his dementia sometimes caused severe mood swings. Changes so abrupt and frightening, his pupils constricted like pinpoints, making his eyes look dark and empty, and he acted out. One night I was called to take him to the hospital because he threw a phone book and telephone across the room at an aide who irritated him. I waited in the hospital ER with him for psych services until after 3 a.m. for one of many med changes. Soon after, he slipped and broke his ankle after spraying down the whole bathroom with his shower hose. He was the bad boy of the dementia unit, handing out cake to diabetics and sauntering down the hallway in dark glasses saying he was Ray Charles. More than once I had to beg the facility to keep him.
My mother and I had always been close, but the loss of her husband and my father to dementia bonded us closer still. Together, we grieved, shared an occasional stiff drink, and listened to guided imagery stress relief tapes to stave off depression. Crying on each other’s shoulder helped most.
When Dad’s condition worsened, my mother took charge of funeral plans. She accepted the end of life and managed it as if she were dealing with any other life event. “Let’s make a day of it,” she said. “We’ll go out to lunch when all the nasty business is over.” I helped her choose caskets in the funeral home. We laughed at the gaudy ones and cried when she picked her own. Our moods fluctuated all morning as she signed papers with the funeral director.
My mother planned two funerals in one day and prepaid them. “Death is a natural process,” she said in her efficient voice. “One more thing you won’t have to do.” I sat numbly fighting back tears of pride for her courage.
My father declined in a spiral of sickness … vomiting blood in the emergency room, confused, and wasting away. He died on the day we signed him into hospice, too late to ease his pain.
A year after we buried him, Mom’s COPD flared, and she was admitted to the hospital with pneumonia. “Never again,” she said when she came home. Determined to avoid the inevitable back and forth of the emergency room, she talked to her doctor and signed herself into hospice; and because she went in with her eyes wide open, she had time to bond with her aide and hospice nurse. Hospice services kept my mother pain-free and gave me the break I needed. We both kept up with the chaplain and social worker and felt completely cared for by her hospice team.
Eventually, it grew difficult for Mom to come downstairs to eat. She didn’t like eating in her bedroom, and my daughters were away at college, so I decided to redesign the room across the hall from my mother’s. I placed a round table with a bright tablecloth beneath the window, set out electric candles and christened it “The Bistro.” Mom loved the Bistro. Her appetite returned. We chatted over coffee, shared meals, and played Scrabble there. Then, as a gift, my husband Hugh installed a birdfeeder outside the window that attracted cardinals and blue jays. This sunny space cheered my mother. Visitors were more comfortable in the Bistro so they stayed longer, and it gave Mom an outdoor view of winter, spring, summer, and fall.
Over the course of her two years in hospice, my mother chose personal gifts with care to leave to her children and grandchildren. I was stunned when she told me that hospice was one of the best times of her life. For the first time, she said, she was completely free of responsibility and felt cared for and loved. I believe that hospice helped her live longer.
Mom drew joy and reverence from her surroundings to her last breath, in part because we learned from Dad’s hard experience. Planning for death made it more peaceful. I’m grateful that my parents not only brought me into this world, but also showed me how to leave it with dignity.
Rosemary Rawlins is a writer, editor, and passionate advocate for caregiving and traumatic brain injury. She serves as a project consultant and advisory board member for the TBI Model System of Care at Virginia Commonwealth University Health Systems, and was appointed to the Governor’s Commonwealth Neurotrauma Initiative Advisory Board in Virginia in July, 2013.
Next week, we will spotlight the other prize-winning story from the 2014-15 John A. Hartford Foundation Story Contest. Read our previous Health AGEnda posts on the contest: