The most common mistake in caregiving is failing to plan. It’s so easy to put off the day of reckoning until next year, next month—even tomorrow—rather than face the music and get ready for the challenges in advance.
The opposite is true of Heather Cariou. The day of reckoning is always looming in her consciousness. She can feel its presence like a living, breathing thing. She knows that one day very soon, her family’s needs will demand her full attention, and her life will change irrevocably. Unlike most of us, Heather is prepared.
Heather is 58 and lives in New Jersey with her husband. That she will soon be a fulltime caregiver is a given, a question of when, not if. Her younger brother Jeff is 49 and lives in a small town near Toronto. He has cystic fibrosis (CF), and has already exceeded the average life expectancy for that disease by about 12 years. Living about 20 minutes from Jeff in Toronto are Heather and Jeff’s parents. Dad is 80 and is energetic and active, but sometimes suffers from what his wife calls “deficits,” by which she means cognitive deficits. Mom is 76 and has severe high blood pressure and a heart arrhythmia known as A-Fib (atrial fibrillation).
“I will probably end up caregiving all three of these family members fairly soon,” says Heather. “Luckily, I’m a born caregiver. I’ve been preparing for my role as caregiver my whole life.”
Heather is, indeed, more prepared than most of us would be in a similar situation. She grew up caring for her sister Pam, who died of CF at the age of 26. Heather wrote a book, Sixty-Five Roses, about her relationship with Pam. “When a family member is battling a chronic illness, you’re very much in crisis mode all the time. My sister and I shared a room, and as a young girl, I would wake during the night to make sure she was still breathing.”
Because of her life experience, Heather can be quite frank in the way she talks about the choices she will have to make for her family’s care. There’s her brother Jeff, who is weakening day by day. “We talk about mortality. We talk about pain management,” says Heather. “If he gets much weaker, I can’t see him moving in with my parents. They’re having enough of a challenge taking care of each other, much less taking care of him day to day.”
Then there are her parents: “Eventually I will have to make a decision: will I have to move there?” says Heather, even as she worries about how that would impact her husband’s career, which, at least for now, requires him to be in New Jersey. “Am I going to be a commuter caregiver? Will I have to go several days a month? Do I bring them down here?”
The questions continue: Could any of the three go into assisted living, should they need help with daily activities? About her brother, she is adamant: “I’m not going to put a young man in with a bunch of senior citizens.”
About her parents, it’s a little less clear, depending on who outlives whom, and how self-sufficient the survivor is: “I would try to keep them home, together, for as long as I could. I could see my father in assisted living if he was alone. I can’t really see my mother doing that. If she was alone, I would arrange for some kind of home care for her.
Heather has also done a lot of thinking about the challenges that confront caregivers. Borrowing, in spirit, from the tenets of the serenity prayer, she offers her philosophy that “the only true power I have in my life is the power to choose hope or fear, faith or despair. You can’t control the things that happen to you, but you can choose how to respond.”
She’s also seen the pitfalls that caregivers fall into, namely coming to identify so totally with the caregiving that they neglect their own needs entirely: “You can get so caught up in doing, and forget about being. Your whole identity becomes about being a caregiver. You start believing in your power to fix things. Then, when you can’t it’s just awful. For example, as much as I know that there are things I cannot make better for my brother, or change for him, it still devastates me that I can’t make him better. Sometimes the only solution is to take a long walk along the river and have a good cry.”
But, having been through extremely difficult times with her younger sister, Heather has seen the ups and downs of chronic illness. She knows full well the challenges that lie ahead with both her brother and her parents, and she understands the vital importance of keeping balance in her life. More than anything else, whatever the future brings, Heather is ready.
Until next Monday,
If you’d like to share your story about caregiving, write to me at email@example.com
Steve Slon is a writer specializing in health and aging. He is the former editor of AARP The Magazine.