Anyone who cares for the needs of another person is a caregiver. The needs may be temporary, as in the case of a minor surgery, or permanently, as in the case of Alzheimer’s.
Let’s face it: no one sets out to be the caregiver for someone with Alzheimer’s. It is a task that falls upon someone—or often, several loved ones—who happens to love a person who has the disease. It is also an enormously difficult task, filled with emotional distress, mental upset, and physical exhaustion. And most Americans are well aware of it: A survey by the Alzheimer’s Association released in 2004 found that people are just as afraid of becoming a caregiver for someone with Alzheimer’s as they are of developing the disease itself.
Who are these caregivers? According to the National Institute on Aging, the vast majority are family members, with the largest group being spouses, followed in descending numbers by daughters, daughters-in-law, sons, siblings, grandchildren, and others. Most caregivers are also women.
Not surprisingly, people who care for loved ones with Alzheimer’s spend more time looking out for that person than those whose family or friends are stricken with other illnesses. Early on, the caregiver may be involved in less taxing duties, such as preparing meals, driving the person with Alzheimer’s to doctor’s appointments, or making sure he takes his medication. The caregiver may also be involved in making important financial and legal decisions, seeking out medical services, and making important treatment decisions.
As the disease progresses, the caregiver may wind up handling more difficult day-to-day tasks such as bathing, dressing, feeding, and dealing with incontinence. At the same time, the patient may become increasingly difficult, hostile, and hard to handle, requiring more and more attention and energy from those around him. The burden on the caregiver—who may often have her own family, job, and household to manage—can become intolerable.
Experts are only now beginning to examine the impact Alzheimer’s and other dementias have on the caregiver. Studies have found that not everyone responds to the stress of caregiving in the same way. Those who are male, get few breaks from their responsibilities, and suffer from their own medical problems are most at risk for the physical and emotional stresses of caregiving. That’s why this book will devote an entire chapter to the care of the caregiver.
For now, suffice it to say that caregiving can exact a tremendous toll on a loved one, especially as the disease progresses. But research has also shown that being a caregiver to a person with Alzheimer’s does have its unique rewards, including a renewed sense of purpose in life, fulfillment of a commitment to a spouse, an opportunity to give back to a parent, renewal of religious faith, and closer ties with people through new relationships or the strengthening of existing relationships.
TAKING CHARGE
Perhaps it’s your mother who has been diagnosed with Alzheimer’s, and you and your siblings are wresding with what to do next. Everyone is reluctant to step forward and take charge, but ultimately, someone, or a few people, will have to assume the job as primary caregiver.
In his book, Alzheimer’s Early Stages: First Steps for Family, Friends and Caregivers, Daniel Kuhn writes about the importance of preserving the patient’s dignity—minimizing the affected person’s disabilities while maximizing the abilities that remain. The task of caregiver, he says, involves not only caring for the person, but caring about the person, so that the person with Alzheimer’s Disease maintains his self-esteem.
Of course, becoming a caregiver for someone with Alzheimer’s doesn’t come with a manual. There are no precise directions to follow. There is no educational training that can prepare you for this job. After all, every patient is unique, and each caregiver is different.
But the goal is to always treat a person with respect, to provide assistance whenever the patient needs it without overstepping your boundaries. “If you are assertive without being domineering, helpful without being overbearing, and kind without being patronizing, then the person with the disease is likely to respond positively to your intentions,” Kuhn writes.