David Hilfiker decided to come out of the closet last year -- the Alzheimer's closet, that is. After experiencing a few startling lapses of memory, Hilfiker, 68, a family physician who practiced in a rural Minnesota clinic and later an inner city clinic in Washington, D.C., was diagnosed by a neurologist as having mild but progressive cognitive impairment. So rather than keep his condition to himself out of embarrassment or fear, Hilfiker has been writing a daily journal and blogging about it in an effort to help others learn how to cope with the disease.
Writing is a natural inclination for Hilfiker, who in a desire to create a more just society published several well-received books about his past experiences. His first book, Healing the Wounds (Pantheon, 1985) is about his rural practice. Not All of Us Are Saints (Hill and Wang, 1994) chronicles his time as a poverty doctor in the inner city. His latest book is Urban Injustice: How Ghettos Happen (Seven Stories Press, 2002. His blog is called "Watching the Lights Go Out: a Memoir From Inside Alzheimer's Disease."
"It's important to remember there are multiple stages," says Hilfiker about the disease, "and it's different at every stage. I don't need physical care yet." He acknowledges that he is able to talk openly about it with his wife and family and they have discussed his condition in great detail, outlining future plans, a big part of which is the eventual caregiving. Hilfiker has been married to Marja for more than 30 years and they have a loving and close relationship. They have three grown children and three grandchildren and live in the Columbia Heights area of Washington, D.C.
Hilfiker believes it's important for chaplains to find out what kind of relationship the caregiver has with the patient. Are they able to talk openly about the condition? "Some people cannot talk about it at all," he points out, because they are in denial. "There are some," he adds, "who are mentally incapable of recognizing the disease." He advises not to push too hard. For example, chaplains who suspect a patient is worried or curious about it might approach the subject by asking: "Do you notice any issues with your memory?" rather than "Do you think you have dementia?" It's important to get comfortable talking about it; encourage them to get tested. Normal slowing of memory does not mean illness and there are some forms of dementia that can be treated.
Further along for the caregiver is the issue of how to know when the patient needs help. It's a struggle to find a balance, to recognize the subtle difference in when to help and not to help. Hilfiker gives an example of how little things can affect the situation. Recently, when he and Marja were leaving a museum exhibition, he had trouble finding the sleeve of his jacket. Sensing his difficulty, Marja immediately helped him put on his jacket. However, not wanting to feel he was already disabled, Hilfiker grew irritated and insisted he could do it himself. For some reason he resented the help. So how does a caregiver know when to be totally helpful and when to let the person find his or her own way? For example, if he never has to worry about putting on his jacket properly, he will eventually forget how to do it. "You don't want to disempower the person too early," he says, noting that his wife is not always going to know when to help.
There is a question, too, of understanding and acknowledging the subtleties of caregiving. "Some caregivers may want to take over," he points out. If a caregiver takes over, the person will actually forget how to do things for himself. "And is a spouse the right person to be the caregiver?" Some may be loving and giving and able to do it, like Marja, he says but others may not have the right personality or may grow to resent the burden, no matter how much they love their spouse. "The spouse (caregiver) needs to be counseled regularly about how to care for him or herself." Hilfiker's daughter, a social worker, recently reminded him that when the time came for total caretaking, she was going to have an argument with her mother because Marja, who loves David, may want to care for him at home for too long.
The caregiver and the patient and those people close need to sit down early, talk about how it's going to work, such as learning about Medicaid or Medicare financing, living wills, and when it will be time to be in an institution.
Hilfiker said a gift of confronting his disease is that it lets him focus on living in the present. "It is the primary focus of prayer and meditation, the purpose of chants and other music and art," says Hilfiker, himself a practitioner of meditation and yoga as well as biking. The future hasn't happened yet, so the only place we're actually alive is in the here and now. Living in the future can create a particular sadness, as he relates in his blog. "It is really Marja who will suffer the most. Not only will she have to shoulder the increasing burden of caring for me, but she'll also lose the source of the physical, emotional and spiritual support in our relationship. The greatest pain that I feel from this disease, is knowing what awaits her. The only time I get really weepy is when I dwell on that."
On Hilfiker's website you will find a link to communications tips for caregivers when interacting with dementia patients such as using humor and controlling anger here, as well as a list of links to other helpful websites on Alzheimer's disease here.
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