Losing my father: dealing with Alzheimer’s disease
"Your father tried to cut the grass this morning with his car. He thought it was the riding mower," my mother said. "Well," I replied, "at least he didn’t cut the grass too short." She laughed briefly, then began to cry. "It’s getting harder," she said. "I know mom . . . I know."
I am a baby boomer, one of 76 million born in the United States from 1946 to 1964. My 85-year-old father grew up during the Great Depression and fought in World War II. In 1985 my parents retired to Florida; my husband and I moved to Ohio, and my brother and his wife remained on Long Island. Our comfortable lives were upended when my father developed Alzheimer’s disease.
Alzheimer’s is irreversible—a progressive brain disorder that begins with mild memory loss and confusion, but eventually destroys judgment, language and thinking skills, and the ability to care for oneself. The causes of Alzheimer’s are unclear. There is no cure and the available drugs only slow down its progression.
The nation’s population is aging. The Alzheimer’s Association estimates that one out of every eight baby boomers could develop the disease. The World Health Organization estimates that more than 4.5 million Americans have Alzheimer’s now, and about 50 percent of people older than 85 are believed to be affected as well. Most people with Alzheimer’s begin exhibiting symptoms after 60, though it can strike people in their 40s and 50s. Many Americans are literally losing their minds.
The warning signs for my father began as early as 2001, but we dismissed them as "senior moments." By 2005 we could no longer ignore the signs. He was diagnosed with middle stage Alzheimer’s disease. I was scared. My grandmother had died horribly from the ravages of Alzheimer’s. Now it was attacking my father. Panic would set in whenever I misplaced my keys or forgot a name. This is not an unusual reaction. According to a MetLife Foundation survey, Americans age 55 and older fear Alzheimer’s disease more than any other ailment, including heart disease, stroke or diabetes. Yet few of us prepare for coping with Alzheimer’s in ourselves or our love ones. Where do you start when the amount of available information is overwhelming or a loved one is in denial?
Start here: A visit to the local Alzheimer’s Association chapter office and their Web site, www.alz.org, can provide you with a wealth of information. The book we found most helpful was Coach Broyles’ Playbook for Alzheimer’s Caregivers: A Practical Tips Guide. It is full of information, advice, resources and suggestions for laying out a plan of action.
Get your ducks in a row: Update all legal papers including living wills, financial power of attorney, and health care power of attorney. Broyles’ Playbook and the Alzheimer’s Web site explain the purpose of these and other legal documents. It is important to consult an attorney who understands elder care law so that these documents are drawn up properly. The local Alzheimer’s Association Office can suggest elder law attorneys or visit www.eldercare.gov.
Medically speaking: Go with your parent to his or her doctor visits. During these appointments, your parent can verbally give the doctors permission to discuss heath care issues with you, and can sign a HIPAA release of information form. The Privacy Rule (HIPAA) does not require health care providers to discuss health care decisions with family, friends or even the patient’s spouse.
Managing the situation long distance: Visit the Web site of the National Association of Professional Geriatric Care Managers, www.caremanager.org. A Professional Geriatric Care Manager (PGCM) is a health and human services specialist who helps families care for older relatives. PGCMs are trained and experienced in several fields, including nursing, gerontology, social work or psychology, with a specialized focus on issues related to aging and elder care. The Web site has tools for finding PGCMs near your parents’ home, provides a list of questions to ask when interviewing a potential care manager, and explains the types of services a PGCM can provide.
Breaking down the wall: The most difficult obstacle we had to overcome was getting my mother to agree to work with a geriatric care manager. It took several crises, frantic phone calls, and flights to Florida for her to finally agree to accept outside help. To increase mom’s comfort level, I flew to Florida when the PGCM did the cognitive and physical assessment on my parents. Her written assessment is a comprehensive evaluation of the situation and the list of recommendations is a blueprint for what still needs to be done.
We now have a person in place who can be a support for my mother, brother and me. My parents’ legal papers are updated and I can communicate directly with their physician. I wish I could say that our problems are solved. Unfortunately, the worst is yet to come. My father no longer recognizes family members in pictures, no longer remembers my husband’s or my daughters’ names, and I know from experience, that I will one day look into my father’s eyes and he will not know who I am.
Lita Gonzalez, a longtime community volunteer, lives in Cleveland Heights with her husband Mark. Both her daughters are Heights High graduates.