Coleen McKechnie was 39 years old when she got the call from her cousin Kami. "She said, 'Your mother is doing worse. It's like a switch has flipped. Can you come up here and help right now?' "
McKechnie's mother, Angela, was in the final stages of Huntington's disease, a progressive condition where your physical and mental abilities gradually get worse. "I couldn't not do it," McKechnie says. In short order, she put her house on the market, quit her job as a graphic designer in Austin, TX, and moved in with her mother and her aunt 500 miles away in the small town of Monett, MO.
She joined the ranks of an estimated 44 million Americans who provide unpaid care to older or disabled adults. The unsung heroes of their families and the health care system, caregivers give a lot of themselves to carry out a labor of love.
Good Days and Bad
McKechnie hit the ground running when she arrived in Monett. The night she got there, she started changing her mom’s diapers. While no child wants this role reversal, McKechnie saw a bigger picture. "About the time you think you can't take anymore, or you think it's just going to keep getting worse, it gets better."
Things got worse and then better, in part because McKechnie adapted to each new turn in her mother's condition, such as her mother not being able to feed herself or having a harder time speaking.
But sometimes, what looked like a turn for the worse changed. Bouts with flailing limbs that kept Angela in her bed were fleeting.
Even the turn that Angela had taken when McKechnie's cousin called was temporary. "When I got there, she got better because I was there," McKechnie says. She cared for her mother for about 10 months before she passed away.
Sylvia Freeman of Durham, NC, cared for Sam, her husband of 40 years, full-time during his last few years of life with Parkinson's disease and Lewy body dementia. "One day he'd be fine, and I'd think his medicine was working. Then he'd fall or start talking nonsense, and be totally different the next day or hour."
The message, both women say, is to be flexible.
"I never knew what to expect from day to day. I had to be used to making changes at the spur of the moment," Freeman says.
McKechnie agrees: "It could change tomorrow. It could change next week. You just don't know. You navigate as you go."
The Demands of the Job
Barbara Hanberry's husband, Jack, had a stroke in 2001 when she was 70. The entire right side of his body was paralyzed, and his speech became hard to understand.
For years after that, she dressed and bathed her husband every day and got his meals ready. "I love him so much," she says. "I was determined I was going to take care of him myself for as long as I could."
The Hanberrys, who lived in a suburb of Atlanta, now live together semi-independently in an assisted living facility. Before that, Barbara hired a certified nursing assistant to handle dressing, bathing, and cooking for her husband.
"At first, you think you can do everything," Freeman says. "But at some point you have to realize it's OK to ask for help."
McKechnie shared caregiving duties with her aunt and cousin.
The Real Struggle
But the physical tasks aren't the hardest part, these caregivers say. It's when their loved ones lose their thinking and communication skills.
"He [was] here physically, but I didn't have anybody to talk to, I had nobody to make love with, there were all these things that you couldn't do anymore," Freeman says. "If you've been close and had a really good life together, that's what gets you as a caregiver."
Hanberry, too, missed talking with her husband. "He tries to tell me what he wants to say, and I try to guess. That is probably the most frustrating of everything for me."
Self-Care Is Key
When you're responsible for the needs of a loved one 24 hours a day, it can be easy to forget your own needs. But it's important not to. Depression, anxiety, and stress are more common among caregivers than other people.
"You don't have to be a saint. You can want him to be OK and want a life, too," Freeman says. "You have to look after the person. But reserve time for yourself, too, and don't feel guilty about it. You can't just give everything you are to somebody."
It might not be easy to admit you need a hand or a break. Hanberry struggled to let others help because she was worried they wouldn't do things the way she does. But when she finally let go, she felt the benefits right away, even from a short outing with her friends.
Self-care also includes getting emotional support. When Freeman could no longer care for her husband and transferred him to a nursing home, she didn't expect to find so much comfort in the other family members there. It was helpful, she says, just to know other people in the same situation.
But to get that support, you might have to seek it out, rather than expecting others to reach out to see how you’re doing.
The Silver Lining
While it may be easier to see the costs, there are rewards, too.
McKechnie’s relationship with her mother was strained for many years before she moved in as a caregiver. At one point, they went a year without speaking. They reconciled shortly before Angela's health began its rapid decline.
Caring for Angela and learning about Huntington's disease allowed McKechnie to forgive her. She says all the complaints she had about her mother growing up she knows now were textbook symptoms of the disease. She had “no resentment whatsoever," she says. "That's the bond in this situation: Love."