The New Normal
After the initial diagnosis, caregivers should make a follow-up appointment a week or two later to learn more about the disease, medical options, and social support. That allows them a brief time for the news to sink in and begin preparing for a new normal. Peter DeGolia, MD, Professor of Family Medicine, at Case Western Reserve School of Medicine in Cleveland, says he insists that AD patients always bring the family caregiver or other “reliable reporter” to future visits.
“It can be a delicate issue for some families,” he explains, “but having a caregiver present effectively assists the physician by providing more comprehensive information and means the caregiver and patient go home with a more accurate game plan.”
Even in the early stages of the disease, patients can forget what they’re told, so caregivers need to keep a spreadsheet or journal that both the family and provider can refer to.
Stepping Up
Once a loved one is diagnosed, it's up to family caregivers to become strong advocates on their behalf.
That may be difficult or uncomfortable at first, particularly for adult children. It can require a huge shift in attitude, says Jennifer Zaijack, of Wisconsin, who helps long distance with her father’s care. “You have to change how you work with your parents versus how you did before. It's like a whole different way of interacting.”
Allen Vann believes that clinicians should not sugarcoat the nature of the disease.
Allen Vann believes that clinicians should not sugarcoat the nature of the disease. “They have to tell the spouse or caregiver what they need to know, not what they necessarily want to hear, so patients and caregivers know what to expect,” he explained. Many caregivers complain that they're not given enough specifics about the disease's progression and find themselves unprepared for issues like incontinence, agitation, wandering or hoarding.
That’s why it’s so important that caregivers feel empowered to ask questions, says DeGolia. “Write them down and expect them to be answered by the practitioner.”
While many physicians welcome questions – especially when caregivers come to follow-up appointments prepared – patients and caregivers of a certain generation or from certain cultures may still be uncomfortable with these interactions.
“We serve a lot of Latino clients who automatically defer to the concept that the doctor knows all,” said the Family Caregiver Alliance’s Varegas. “Many believe it’s a matter of respect – not questioning what this physician is saying and not asking any questions.”
"You have to be thinking of your loved one's interests first and put yourself on the line a little bit,” says Carol Levine, who directs the United Hospital Fund of New York’s Families and Health Care Project, which focuses on developing partnerships between health care professionals and family caregivers. If you're uncomfortable being assertive, ask another family member to step in, she suggests.
Clinicians can be very busy. But there’s no such thing as an inappropriate question, DeGolia emphasizes.
“Even if you have to stand between the provider and the door, don’t allow yourself to get brushed off if you’re not satisfied or don’t understand.”
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