Living and Dying with Alzheimer's and Related Diseases

About the Book

THERE ARE SOME COMMON THREADS THAT AFFECT all Alzheimer’s victims. “I want to go home” is a phrase caregivers hear repeatedly. But it is impossible to determine where home is. For five years, Mama wanted to “go home.” All that time, she was in the only home she and Daddy had known for over fifty years; still she wanted to go home. She could not describe home. It wasn’t where she lived as a child, or an earlier house she and Daddy had shared.

Sometimes she said it was where the children were--obviously a place from the past that existed only in her mind. Hospice came in and tried to help us understand the dying process. We were new at this. No one in our immediate family had died yet. People used to just die. Now they live longer and they die longer. Daddy occasionally got some words mixed up a bit. This happened with hospice. In Daddy’s language, the “hostage” people came to visit. As was the case with many of Daddy’s words, this may have been more on target than the real word. We were, and Daddy was, hostage to Alzheimer’s.

About the Author

A native of Tallahassee, Florida, Frances Hightower has extensive experience as primary caregiver for her family, and she has been a strong healthcare advocate at the state andnational level. From the family caregiverâ*™s perspective, Frances cared for her mother, who died from complications of Alzheimerâ*™s at age 86; her father, who died from cancerat age 90; and an older brother who, despite physical and mental disabilities, lived in the family home until his death in 1998. After an impressive career which included twelve years as a staff director for the Academy of Sciences in Washington, D.C., Frances returned to Tallahassee and continued her healthcare activities. She served as a member of the Florida Developmental Disabilities Council and as a consultant for the Claude Pepper Foundation and Florida Alliance for the Mentally Ill. She earned national recognition as an advocate and caregiver in 1994 when she spoke as the only caregiver on Hillary Clintonâ*™s nationally-televised healthcare forums. She has also spoken at several annual conferences of the Alzheimerâ*™s Association, and was presented a special award by the American Health Assistance Foundation.