Wednesday, October 2, 2002
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Wednesday, October 2, 2002 |
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When the caregiver needs more care than the patient By SALLIE SATTERTHWAITE Some things are worse than death. And Alzheimer's disease may well be among them. For the patient? Of course, early on, while he or she still knows what's happening. But eventually, as mind, personality, and soul are ripped from the body, the true victim is the caregiver usually a husband, a daughter, a wife ill-prepared for overwhelming day-in, day-out demands. My first editor, on our high school newspaper, died of early-onset Alzheimer's when she was barely 60. Her husband, Wayne Ewing, also in the Class of '53, has since devoted his life to helping Alzheimer's caregivers. In his remarkable book, "Tears in God's Bottle," he wrote of trying not to weep: "Because caregivers are supposed to give selflessly and not count their losses. Because caregivers should remain strong and confident, and not give in to self-pity. Because caregivers need to be tough and avoid displays of weakness." But as Ann's disease progressed, and that part of her that made her Ann faded away leaving an empty shell, a sensitive therapist said to Wayne, "Why wouldn't you mourn your personal loss? You too have been assaulted by this disease, and you may have borne even more of its devastation than Ann during her passage into the unknown. Why do you call such mourning selfish?" We have been spared firsthand experience with Alzheimer's, but we have mourned with so many friends whose lives it has derailed. Enough to be offended by Alzheimer's jokes. Enough to be hurt when "sure preventions" like mental exercise are ballyhooed. Malia, a classmate of our daughter's, writes me occasionally. Her mother was diagnosed several years ago and, until recently, was cared for at home. But the time the family dreaded had arrived: "Mom has started a precipitous decline since June. It's absolutely stunning. She usually doesn't know me, and sometimes doesn't believe that Dad is her husband. Dad got a call today that a room [in the Alzheimer's unit] at Ashley Glen is available and he is considering taking it. "He's met with each of the kids today, and we will make a decision in the next day or two. I am torn, feeling guilty for putting her in, yet concerned about the mental and physical toll this has on Dad. "A friend who's been there says you have to make the decision based on the well-being of the caregiver, because the patient is already gone." For Floy Farr, caregiver, the nightmare is going on a decade. He had in-home nurses until Ashley Glen opened nearly five years ago, and his wife, Bruce, was one of its first patients. He goes to see her every day, bringing her home several times a week, back to the house she loved on Lake Peachtree. She doesn't seem to recognize it any more. Floy doesn't think she knows him either, although "occasionally she smiles when I go in to see her." He's 90 years old, and grateful for the support he has had from nursing home staff and friends. He depended most of all on the strength of his son Thomas. Tom had followed in Floy's footsteps as a banker and visionary who "was doing the same things I had done back in the 1960s," when Peachtree City needed wise financial guidance. The two men were extremely close. Until July, when Tom suddenly died. "This was the worst year of my life," Floy says. He has found Ashley Glen's caregivers' support group one of several in the county indispensable. He urges anyone touched by Alzheimer's to come to meetings for advice, support, understanding, whether their loved one is still at home or in a care facility. "People keep putting off [accepting help]," he says, "but it doesn't work." Malia's father made the decision to place his wife in Ashley Glen. Malia wrote: "Wednesday was a gut-wrenching day, but ... God sent an angel of compassion, it seemed. As I was leaving, one of the managers assured me Mom would be OK and asked how I was doing. That got the tears flowing again, and I headed out the door to my car. "Two ladies were walking up at that time, a way off from me. One of them noticed me and turned aside and headed in my direction. "She called out to me just as I was opening the car door, 'Do you need a hug?' I nodded and she walked across the parking lot and did just that .... I told her what was happening, and she told me her husband had Alzheimer's and was in day care there .... She had kind words to say and gave me her name and another hug. "The next morning in the AJC, on the front page of the Fayette section, was a large color picture of her and her husband leading an article about the Memory Walk ... It seemed like they were just smiling out at me from the paper." I spoke with Malia on the phone, and I could tell from her upbeat tone that she had had a good day. "I'm so impressed with those people, the attendants at Ashley Glen. They're so kind, so gracious. They laugh and try to get the patients to interact. "I know we made the right decision. My dad has real peace about this. [He] has said through the years, long before this, that God will equip you for everything he requires of you." Wayne learned what Malia, Floy, and too many others have learned. "Soon Ann, lost in space and time, was both gone and still there; was well yet very ill; saw yet had no vision; heard yet had little understanding. I was terrified about being so ill-equipped as a caregiver to cope lovingly with such a hideously debilitating illness ...." Over the years, I have rarely responded to requests to write columns "on demand," but I did this one for two reasons. A volunteer with Saturday's Memory Walk in Peachtree City mentioned to me several mutual friends who had overcome breast cancer, colon cancer, and diabetes. "Thank heaven, we're finally seeing cures or at least controls of formerly fatal diseases," she said, "but not for Alzheimer's." And because it's the caregiver rather than the patient who needs help most, 20 percent of the funds raised Saturday will go to education and caregiver support. [Sallie Satterthwaite's e-mail address is sallies@juno.com.]
Third annual Southern Crescent Alzheimer's Memory Walk 5K/3.1 mile run/walk will be this Saturday, Oct. 5, at the Frederick Brown, Jr. Amphitheater in Peachtree City. Registration begins 8 a.m.; runners begin at 9:15, walkers at 9:30 a.m. Also 1/8th mile short stretch. There will be efreshments, music and golf carts if needed. For information call 770-486-6991 or 770-487-8397.
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