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FDA
FDA Consumer
magazine
July-August 2003 Issue
By Terry Ullman
Imagine living with a parent who goes to the grocery store, only to return hours later with no knowledge of where they have been or where they left the car. Or kissing your husband of 50 years and having him ask, "Who are you?"
For the 19 million Americans who care for persons with Alzheimer's disease (AD), these experiences are commonplace. Most of us appreciate how AD victimizes those it afflicts. What we may not realize, is that this tragic disease has more than one victim. There are other, "hidden" victims: the family, friends and caregivers of the person with Alzheimer's.
When families first receive a diagnosis of Alzheimer's disease, they vacillate between trying to get information and trying to find some other, less terrifying explanation for the symptoms they see. In the earliest stages of the disease, it is easy to dismiss the forgetfulness, confusion and subtle personality changes as depression or stress. Most of the time, the person with Alzheimer's seems fine. Many are still driving, working and living alone. One of my clients played golf and did volunteer work for two years after his diagnosis.
However, AD is progressive. As the disease destroys more brain cells, the initial symptoms worsen and new ones appear. The person with Alzheimer's has difficulty remembering who they are or what they did five minutes ago. They need direction to complete routine tasks like making coffee. They have trouble putting sentences together or understanding what is being communicated to them. Easily overwhelmed by a world that has become confusing and nonsensical to them, they react with extreme anger and distress over seemingly minor events.
This is the point when the hidden victims seek help. The terrible truth can no longer be denied: The person they love has Alzheimer's disease. Each and every day, AD will steal another piece of them, turning them into a stranger who, cruelly, still looks like the person they once loved. The worst part for the caregiver is the overwhelming feeling of helplessness. For no matter what they do, they can't stop AD from taking their loved one away. There is no treatment to restore lost capabilities and there is no cure.
Grief is an inevitable reaction. But this is a grief unlike any other. The person is still here. They look healthy. Sometimes, because of the fluctuating nature of the disease, they even seem like their old selves. Then they ask you, while they stand in their home of 35 years, where they are, and you know you have lost them. It is hard to grieve under these circumstances and hard to get other people to understand and acknowledge your loss. With a course that can last up to 20 years, families call it "the funeral that never ends."
AD also victimizes caregivers physically. As the person with Alzheimer's becomes increasingly incapacitated, they require constant supervision, 24 hours a day. Families must assume all of the responsibilities of a person who has Alzheimer's. Assistance is needed for all of their activities, such as bathing, grooming and toileting. Most of these efforts are met with anger and resistance, since the person with the disease often doesn't recognize their need for help. The demands are so great that many caregivers give up their jobs, their social lives and their recreational activities, at a time when they need them most. It takes a toll; 50 percent of caregivers become depressed and 80 percent report high stress and stress-related symptoms.
When caregivers try to seek help they discover another problem. Help is available but it is very expensive. In-home care costs up to $18 an hour. Residential care costs between $2,500 and $6,000 a month. Furthermore, there are virtually no insurance benefits for these services. Another problem is that we have no way of predicting, at the time of diagnosis, how long the person with Alzheimer's will live. In the face of a lengthy, chronic illness with limited resources for long-term care, caregivers often postpone seeking the help they need.
Until a cure is found, Alzheimer's disease will continue to take a toll on the emotional, physical and financial resources of the hidden victims. They deserve recognition and support. They need to know they are not alone.
For support groups and other information for the hidden victims of Alzheimer's disease, contact the Alzheimer's Association. You can find your local chapter by calling 1-800-272-3900 or checking www.alz.org/findchapter.asp.
Terry Ullman is a psychotherapist and geriatric care manager in private practice in Bethesda, Md., where she specializes in Alzheimer's disease and caregiving.