New York, New York
United States
janePlaying God
As a firefighter, Keith Wolfard was used to saving people from death. With strangers, he could protect himself with emotional detachment. "With someone you love who has Alzheimer's, it's entirely different," he says staring at a photo of his pretty, young second wife. "It's emotionally draining. The person you looked forward to having a good, full life with, enjoying the things we all look forward to, you're seeing now deteriorate before your very eyes, slowly, very slowly."
As his shield against the fear of his own destruction, as a husband and a rescuer, Keith Wolfard escalated to Playing God. Those of us who make this turning in the Labyrinth of Caregiving do so out of the most conscientious and compassionate of motives—and also out of fear. We have concentrated so much effort on fixing the problem, we come to believe it is up to us to save our loved one. And up to now, we may have been a large part of doing so. The person we are taking care of may have come to share that belief, reinforcing our own delusion. We become eternally vigilant. But we are setting ourselves up for a great fall, because the cold truth is, we cannot control disease, and we certainly cannot defy death.
Those of us who enter into the turning I call "Playing God" need someone to remind us plainly, "There is a God, but you ain't it!"
Grief as Fear
Keith was already grieving the incremental loss of his wife. No one ever tells you that grief feels so much like fear, as C.S. Lewis memorably describes in "A Grief Observed," about watching his wife die of cancer. "When I speak of fear, I mean the merely animal fear, the recoil of the organism from its destruction; the smotherly feeling; the sense of being a rat in a trap," he wrote.
And Keith was now doing everything for Daphne: feeding her, brushing her teeth, taking her to the bathroom, and cleaning her afterwards. Even as he sank deeper and deeper into grief, he was giving up just about everything that made him who he was. "I felt my whole focal point was my wife's care, and I kind of let things slide for myself."
He rarely let Daphne out of his sight. He stopped working, stopped going out to the garage to pursue his passion for restoring old cars, and he even begged off the annual "Wild Hog" motorcycle trip with his Harley buddies. Insisting to anyone who offered to help that he was a big, strong man who needed no help, he became a "rat in a trap," isolated in the early-retirement home he had built for the two of them. Following Daphne around all day to make sure she didn't fall or burn herself, he would peer out the windows at the pine needles piling up in the driveway, denying himself even his fastidious pleasure in manicuring the grounds that he and Daphne had so lovingly planted.
Revising Your Attachment
The torture is to be grieving a loved one who is still there. At the same time, you must work at accepting that there will be no reversal. With Alzheimer's disease, she or he will never fully return to you. You will only be able to save yourself by beginning the process of "revising attachment," as author and practicing psychotherapist Pauline Boss famously described in her book, "Ambiguous Loss: Learning to Live with Unresolved Grief." (Harvard University Press, 2000). "We don't cut ourselves off from a loved one, even after death, but we have to learn the most exquisite of balancing acts: how to remember what was and honor it, and at the same time commit to going on."
That means going out for coffee or dinner with people who are fully present, even as you continue to visit and touch the person who has dementia. Dr. Boss says short visits are better than long stays. If the caregiver is depressed or anxious, the patient picks it up. "Caregivers must connect with people in the healthy world so they can be less anxious and angry and lonely when they visit the world of dementia."
Keith and Daphne were now on different paths. He was moving close to the center of the Laybyrinth of Caregiving, where, if our loved one will not recover, we must begin the searing work of revising our attachment. Daphne's path was a slow but inexorable decline. Keith's only hope was to find the thread that would lead him back to life, through human connections and a return to his passionate hobbies.
Finding Powerful Tools
Keith took the first baby step by hiring a home health aide for a few hours every day to look after his wife. He then found a program called Powerful Tools for Caregivers, which saved his own health and sanity. PTC is an education program that teaches caregivers the skills and confidence to better care for themselves while caring for someone with chronic illness.
"There are two objectives," says Donna Schempp, senior program director at Family Caregiver Alliance. "One is having a life after you're a caregiver, and one is having a life while you're being a caregiver. If you don't take a break, all your good work is going to be for naught."
Keith was crazy about old cars, and a weekend car swap-meet was coming up that he'd always loved attending with his Harley buddies. "The progression of Daphne's disease has finally got to the point—and I knew it was coming, but I wasn't ready to admit it yet," he told the class, "that I have to reenter the outside world."
When the aide called in sick the day before the meet, Keith scrambled to find a foster-care home nearby. The director encouraged him. "Why don't we try to bring Daphne up for the weekend and see how it works out." He packed a few things for his wife and made sure she had her favorite stuffed animals and sat with her at the foster home until she felt comfortable.
Once he reconnected with his buddies, "I did let myself go to a degree," Keith told me. He was a guy again, shouting, laughing, drinking beer, crashing late, and then, suddenly, it was Sunday evening. The director of the facility met him at the door.
"It went fine," she assured him. "We've made the transition already. You know that it's going to have to happen at some point. Maybe this is the time to make that decision and make it happen now."
All at once, he had rounded the circle and was smack at the center point of the Labyrinth of Caregiving. He had to choose: go down in despair, with his wife, or begin the baby steps of Coming Back. I asked him if it felt like he was at that turning point.
"That sounds right," he said. "But I still wasn't ready. The professional help that I'd had did prepare me for this moment, when I was going to have to turn loose and say that it was somebody else's turn to provide the care that she needed. I do understand that she's in better hands here, because she's dealing with professionals that do it on a daily basis. But I still struggled with the sense I was abandoning her."
Keith did leave Daphne in the facility, but it was not an abandonment. He began the process of modifying his attachment. He took the mornings to clean the house and yard and went back to working on his precious antique cars. It so excited him, he got up earlier and earlier every morning. Every afternoon he visited Daphne, taking her out to lunch or for a long ride on the motorcycle. He learned, to his surprise, that when he is gone, she does not miss him; she isn't fully aware of his absence.
"But when I go there to see her, why, she lights up like a light bulb."
Come back to www.aarp.org/gailsheehy to see Keith's next video and further progress.
Resources
Powerful Tools for Caregivers was developed in Portland, Ore., by Legacy Caregiver Services. Kathy Shannon and Leslie Congleton were determined to spread the program to help others like themselves struggling with family members with cognitive decline. Fortunately, they lived in Oregon, the most progressive state in health care initiatives for the elderly. By now, more than 1,100 class leaders in 28 states have been trained to teach the program. It works for caregivers in all kinds of situations, not just Alzheimer's.
The six-week program is held weekly, in two half-hour sessions, for 10 or 15 people. Caregivers learn how to use community resources, better manage stress, communicate effectively with friends, family, and health care providers; to express and cope with unruly emotions like frustration, fear, rage, and despair; and to take steps to better care for themselves. Attendees also learn to increase their ability to make tough decisions and to balance their lives.
A high degree of confidentiality is maintained, because as Miriam Callahan, project coordinator at Caregiver Resource Center in Buffalo, N.Y, which offers a PTC course, says, "In many ways the classes resemble intimate support groups or private therapeutic counseling sessions." This "safe" environment allows for difficult emotions to surface, soul-searching, and the shedding of tears.
Perhaps the most important part of the program is the action plan.
Participants are asked to commit to a self-care behavior they will do every day over the next week. It can be anything that gives them pleasure and takes them completely out of the tasks of caregiving—no fair calling about an undelivered prescription. It could be taking a bike ride or a swim, listening to music, working on their car, doing yoga, or having coffee with a friend.
"The reason it works is because the focus is on 'What are you going to do for yourself at the end of each day?'" says Congleton, a master trainer. "No matter how little that first action plan is, it will make a huge difference" says Schempp. "It might be just taking a walk around the block." She remembers a woman who managed to go to the end of the block, buy a cup of coffee, and walk back to find that the world hadn't ended and that her mother was still alive. It was a beginning. Later, she was able to walk around the block, then to the library for one hour, while an attendant took care of her mom. She took pleasure in reading a book for 20 minutes and sipping a Starbucks coffee.
On behalf of Powerful Tools for Caregivers, Kathy Shannon recently accepted the NOMA (Network on Multicultural Aging) Award, sponsored by the AARP Foundation, for excellence in multicultural aging programs.
PTC is offered collaboratively by many nonprofit organizations, such as AARP, Area Agencies on Aging, Cooperative Extension Services, and Parish Nurses. Class members receive "The Caregiver Helpbook," which was developed specifically for the class.
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