Other personal homepages of Alzheimer's caregivers, 1996-2009

The following was published in two parts in articles I wrote for Suite 101 in 2001 when I was an Alzheimer's Disease topic Editor for them. Most of these have disappeared over the years, and many of them went away with GeoCities. I am leaving their URLs but not leaving them active if they no longer exist. It is possible that some of them may have been archived by the Internet Archive and they might be accessed through it's WayBack Machine through copying and pasting the URL into the search. I have just discovered that most of these sites, even the GeoCities ones, are archived there. I have copied some images and will see if I can post some with the site descriptions below. I will also work on trying to link as many as possible to the archived sites at WayBack Machine.

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/hoffman 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 ttp://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.

One other pioneer in the community of caregivers is Kate Murphy. Her site, Kate' Place, at http://home.att.net/~katesdrm/ developed out of her experience as caregiver to both her parents, who were stroke victims, for over seventeen years. Her father died in 1998, but Kate has continued to be very involved in caregiver support online. She also has been an editor for Today's Caregiver Magazine.

These are just a few of the earliest personal home pages by caregivers that had their beginnings in 1995 and 1996. I feel very honored to be among these pioneers, as my site, A Year to Remember at http://www.zarcrom.com/users/yeartorem/ also had its beginning in 1996. There are many, many more personal sites about Alzheimer's and caregiving now, and I will cover some of them in part two.

Though there were just a few in the earlier years of the Internet, since 1997 personal pages about Alzheimer's and caregiving have multiplied so fast it's difficult to keep up with them. But I want to cover in this article a few of the most outstanding ones I've visited.

Alzheimer's Outreach by Marsha Penington (aka Tay, or Taylor Austin) at http://www.zarcrom.com/users/alzheimers is a totally amazing site. Marsha's informational directories on Alzheimer's, other dementias, and caregiving issues includes around 250 full-text documents. There is a poetry gallery full of poetry by Steven Stoker, Jerry Ham, Brenda Race, and Dorothy Womack, and Marsha has provided Web space for the various works of other caregivers and Alzheimer's patients throughout her site. At the Alzheimer's Outreach site, family caregivers and patients alike have shared their photos, memories, memorials, thoughts, and the list goes on and on. There is so much this site offers, it's difficult to even begin to describe it all. Marsha's own story of her mother's Alzheimer's, along with beautifully designed backgrounds and graphics by Marsha herself, add a personal touch and intensify the sense of awe I feel as I visit this wonderful site. Futhermore, Alzheimer's Outreach is also the large and very active local community service/support group that is coordinated by Marsha in the area where she lives. Locally through this group and around the world via the Internet, Marsha's Alzheimer's Outreach is for so many an excellent source of information and support at all stages of the Alzheimer's caregiving journey.

Passage into Paradise by Dorothy Womack is another amazing site which can be found at http://www.geocities.com/womack47/. Dorothy's book, Passage into Paradise, is her caregiving journal kept during her time as caregiver for her mother. It is a huge book-- around 200 pages printed out, presented as 25 pages online-- but it is one that the reader will "not want to put down" until finished. Dorothy has given us not only her mother's journey with Alzheimer's, but also the thoughts, feelings, doubts, and pain of a caregiver-- even one who is a woman of great faith. Dorothy's moving poetry and beautiful photos of her mother are also included, and soft nature and angel backgrounds help make the book a pleasure to read. Passage into Paradise has been awarded the Alzheimer's Site of the Week at About.com, was a Suite101 Featured Online Book, and was the 2nd Place winner for the year 2000 at Top Alzheimer's/Caregiving Sites. Dorothy is a writer for Today's Caregiver (Caregiver.com), Empowering Caregivers, and her poems and articles are featured at several other Web sites, including Alzheimer's Outreach, A Year to Remember, and Poetry.com.

Poems, Prayers, and Promises by Brenda Race at http://www.geocities.com/brace03/Mom.html is another wonderful personal site by a former caregiver. Brenda cared for her mother at home until she entered a nursing home in December 1998. She was still with her every chance she got until her mother died about a year later in December 1999. Brenda's site, Poems, Prayers, and Promises, is unique in that it gives a positive look at the nursing home experience, through her poetry and photos. Brenda has collected her thoughts, memories, photos, and poems from all stages in her journey with her mother and Alzheimer's, and she has illustrated them all so wonderfully with beautiful backgrounds and graphics. She also has included some poems that Dorothy Womack wrote for her during her times of grief after her mother's entrance into the nursing home and as the disease progressed, taking more and more of her mother from her. It's a wonderful site, full of beautiful poetry, wonderful photos and graphics, and tremendous spiritual insight. Brenda's Poems, Prayers, and Promises was 1st Place winner for the year 2000 at Top Alzheimer's/Caregiving Sites.

The Long Goodbye: Searching for Comfort, Courage, and Strength by Penny Klein at http://www.geocities.com/Wellesley/Garden is a site dedicated to Jewish caregivers. Penny is her mother's caregiver, and as well as providing links, recommending books for caregivers, and sharing her journal, she also provides spiritual resources for those who are of the Jewish faith. Penny shares that in her rediscovered faith she is finding comfort and strength. One of the books she recommends is one that many of us know and love: Why Bad Things Happen to Good People by Rabbi Harold Kushner. Penny's page is unique in that she is meeting a need for Jewish caregivers, seeking spiritual comfort and direction as well as information about Alzheimer's and caregiving.

A Map for the Journey by Sandra Cobb at http://www.geocities.com/Heartland/7015/ is another great site. Sandra's dad has had Alzheimer's Disease for over ten years, so she has plenty of experience with this disease to share with us, and her site is indeed a "Map for the Journey". She shares information about what one should do first upon the diagosis of Alzheimer's, what to expect as the disease progresses, sources of help for the caregiver, planning ahead with financial and legal matters, and much more. A Map for the Journey is an excellently designed and very informative site from the heart of another caregiver.

Carla's Page at http://www.angelfire.com/ma/alrac/ is a very creative site by Carla, caregiver to her dad and mother of two small children. Her Dad's Page includes his picture and tells his story, and her Kids Page on Dementia is a that helps kids to understand Alzheimer's and how they can help a grandparent who has this disease. Activities are suggested, and instructions for making a gift for the grandparent are included. This unique site by Carla is helping meet a need for materials for children who need help in coping with Alzheimer's disease in their families.

Undying Love at http://denver.rockymountainnews.com/undyinglove is the one of the most beautiful sites I've ever seen. It was created by Patrick Davidson, a journalist, about his mother who died of Alzheimer's. Undying Love tells the story of the toll this disease took on his mother and the whole family through excellent black and white photos, the wonderfully written story, and even Real Audio throughout so we can listen as Patrick shares his feelings. The emotions all of us know as caregivers and family members are expressed so completely, and the beautiful way this story is told moves me to tears, again and again, every time I visit this wonderful site. Patrick's site is a moving memorial to his mother and a place where we can go where we can say "Yes, I feel those emotions", shed some tears, and heal.

These are just a few of the many wonderful personal sites by family caregivers and former caregivers. I could write a whole column on these and other other personal homepages by caregivers alone. Though some of these still walk the journey with the loved one who has Alzheimer's, I have watched as others one by one have lost that loved one. They remain online, their sites become a memorial, and they continue wonderfully sharing in so many ways so that others who walk the same path will be more informed and will not feel so alone.