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Remembering Online: Home Pages of Alzheimer's Caregivers, Part 1

© Brenda S. Parris

As early as 1995 or 1996, individual family caregivers began creating Web sites to share their stories and to provide links to Alzheimer's and caregiving information. The new graphical browsers and HTML tools equipped these pioneers to begin projects in honor of the afflicted person in their lives and to fight the disease that had so affected their families. In the past five or six years, some of these pioneer projects have grown amazingly large sites, packed with Alzheimer's and caregiving information as well as personal stories.

The first of such sites I remember visiting was Bob Hoffman's Family Home Page. Bob's wife, Shirley, was diagnosed with dementia of the Alzheimer's type in 1995 at age 50. His pages at http://www.bhoffcomp.com/coping/hoffmann... share the family journal, their thoughts and feelings as the disease progressed, and helpful information about dementia and caregiving. Shirley died in 1998 at the age of 54, and Bob's site remained online as a part of his Coping: Caregiver's Helping Other Caregivers at http://www.bhoffcomp.com/coping/

Though it tells less about her personal experience as her mother-in-law's caregiver, Alzwell at http://www.webcom.com/~susan/ , by Susan Grossman, is packed full of information and opportunities for others to share their stories. Her Anger Wall is a place where many have expressed their feelings about Alzheimer's as they wrote on the wall. Susan's site has been highly reviewed and received several prestigious awards, even appearing in Yahoo Internet Life's Touched by the Net. Susan is also owner of the Caregiver's Ring, the first Web ring that brought together caregiving related sites. After her mother-in-law died, Susan continued regularly updating her site and keeps people informed about updates through her Keepin' Up with ALZwell newsletter.

Another of the first home pages by caregivers was Alzheimer's Disease in Our Family by Marilyn Schaeffer at http://www.rain.org/~caspita/ad.html . A beautiful photo of Marilyn's mother greets us at the top of the main page, and scrolling down find journals telling her mother's story as well as links to information about Alzheimer's, a chat room, and poetry by caregivers. Marilyn's mother died in 1998, but this Web page remains as a beautiful memorial and a source of information and inspiration.

Denise Cooper was another of these pioneers on the Internet with her Coping with Alzheimer's at http://www.geocities.com/HotSprings/3004/ Her site is unique in that it has shared a continuous almost daily caregiving journal since its beginning in 1996. Denise has reluctantly had to place her mother in a nursing home now as she is no longer able to care for her. After years of struggling as caregiver to her mother, Denise now has another battle. For a couple of years now she has put up a good fight after being afflicted with lung cancer.