Personal Homepages about Alzheimer's and Caregiving, from A Year to Remember, by Brenda S. Parris

"The Wind Beneath My Wings"

Pages by Family Caregivers

As I begin again, updating this site,in 2023, I see what I feared has come to pass. Most if not all of these Web sites are now gone, and probably many of their creators have passed away. So I will comment each out and work to find new ones. Nowdays "Homepages" are a thing of the past, and most Web sites have been created by companies, not individuals telling personal stories. Whatever I may find by individuals will probably be in the form of blogs. Most individuals have moved to Facebook or other social media to share their stories, and I have as well, I share my mother's story there but also mixed in is my daily life, my cat companions, my friends, and memories of my family, now most of whom have passed on. I will have to figure out where to link my Facebook and other social media.

Meanwhile, as I comment them out, I want to remember and honor those who were linked here. There was "Bob Hoffman's Family Homepage". Bob lived in North Dakota, and his wife had early onset dementia beginning at age 50. There was Susan Grossman's "Alzwell Home Page" where she gave opportunities for others to tell their stories, do memorials, share poems, and even write on the "Anger Wall". Susan also began "The Caregiver's Ring" which connected other personal homepages about Alzheimer's and caregiving. I have just found that Alzwell still exists, though it is no longer Susan's personal page, and I will link it on another page of this Web site.

There was Denise Cooper's "Coping with Alzheimer's Disease" where Denise shared her story of taking care of her mother with Alzheimer's, and where she also told the story of her own lung cancer diagnosis. Unfortunately Denise had to put her mother in a nursing home and then passed away before her mother did. There was Marilyn Shaeffer's "Alzheimer's Disease in Our Family" whee she told her story of being her mother's caregiver for many years. There was Sandra Cobb's "A Map for the Journey" where she told the story of her dad's Alzheimer's and also about the fact that he and his wife had been caregivers to his mother during her Alzheimer's. There was Elaine Hartman's "Eldercare Site" where she shared helpful information for caregivers as she continued her own journey as her mother's caregiver. There was Mary Barfoot's "Alzheimer's the Thief" where Mary shared her story of being caregiver to both her mother and her mother's sister. There was "Kate's Place" that tells Kate's story of spending fifteen years as caregiver for both her dad and her mother. There was "Sharon's Place Grandma's Page" where Sharon shared her story of her mother who had become bedridden yet still was smiling when with her grandchildren. There was Reid and Dorothy Craig's "DORIED Alzheimer Pages" where they shared knowledge gained through theri experience as caregivers for Dorothy's motherfort, Courage, and Strength" by Penny Klein who was her mother's caregiver and who was finding some comfort in rediscovering her Jewish faith. There was "Bubblehead's Page" by Edyth Ann, aka Bubblehead, who many of us caregivers and former caregivers met on the Alzheimer newsgroup and CANDID chat that were so very active back in those days. There were Dorothy Womack and Brenda Race who . There was "Meet My Grandma" by Tobi where she shared precious memories of her grandmother. There was "The Long Good-bye : Searching for Comboth shared their beautiful poetry as well as their stories of being their mother's caregivers. Some of those poems can still be found here on my site in the Contributed Poetry section. I also had the great pleasure of meeting Dorothy and Brenda and having several visits with them (More about these too later-- Including Dorothy's books). Ther was Carolyn Haynali's page about her husband's Alzheimer's which included how her faith kept her going, so she called her site "Shekinah Glory" God's Presence-- a Place to Rest". And there was "Joanne's Journal" where Joanne shared as she coped with her mother's Alzheimer's.

It is possible that you might find some of these pages as they were or follow links to where they have moved by using the Internet Archive's Way Back Machine. I just found the Alzwell that way, but since it is no longer a personal page, I am going to list it on another page of my site.

The only two I can still find at their old location from back then are Carla's Page and Marsha's "Alzheimer's Outreach". Carla's doesn't seem to have been updated since way back then. Marsha's still is a huge site but I'm not sure it has been updated much lately either. I completely understand. All of us are getting old if we still are alive.

I will begin now collecting new links to existing pages, though most these days are going to be in the form of blogs instead of Web sites. The blog site on the Alzheimer's Association's Web site is a great starting point.

Alz Blog from the Alzheimer's Association -- "The Alzheimer's Association created this blog to allow caregivers and those with Alzheimer's to share their story, and to keep the community up-to-date on efforts to increase awareness and federal funding of research. Our hope is that alz.org/blog provides a place for all of those affected by Alzheimer's--whether a person with the disease, a caregiver, a researcher, a doctor or an advocate--to continue the conversation."

Alzheimer's Outreach Here's another wonderful page, an amazing page, literally packed full of helpful information, as well as being a place where caregivers have shared many beautiful stories and poems. In a relatively short time Marsha Penington has worked so hard on this beautiful site and done amazing things--every time I visit, I say "WOW!!!" and wonder how Marsha can find time to create such a beautiful and in every way, excellent site. As well as having a mother with Alzheimer's, for whom she has been caregiver, Marsha also had a local "Alzheimer's Outreach", a local support group in her town, where she has provided information and support for many.

Carla's Page Carla is her father's caregiver, as well as being the mother of two small children. Her Dad's Page includes her dad's picture, some of his story, and insiteful bits and pieces of a caregivers life, including "A day in the life...(my best guess at what it must feel like to be in Dad's head)".

Love of Dixie, by Lauren Flake, is a beautiful memorial to her mother, Dixie, and shares information on Alzheimer's, caregiving, and grief. She also has another page at Word Press: Daughters of Dementia where she shares support for those of us who have or have had a parent with Alzheimer's or another dementia.

Laury's Story about her mother's journey is on the Alzheimer's Society, U.K. web site. Here mother had early-onset Alzheimer's, with the first signs starting when she was only 50. This is the story of the 12 years since then until she passed away at only 62.

By People with Alzheimers:

There were a few people back then who had early-onset Alzheimer's who were doing Web sites. Diana Friel McGowin was the first person diagnosed with Alzheimer's to do a Web site, as well as authoring the book "Living in the Labyrinth". She was only 45 when she wasdiagnosed with early-onset Alzheimer's, and she became known as LILAUTHOR1 online in her support group for other patients. Tim Brennan was another Alzheimer's patient who was a poet and writer, and two of his poems are included in the contributed poetry section at this site. Laura Smith was taking Aricept and said she was feeling much better. She started the CWPML (Coping with Personal Memory Loss) support group. The only page by an Alzheimer's patient from back then that I can still find is Mary's, and it hasn't been updated since 2011. It is at Angelfire, one of the free hosting sites that did not go away back then. Most were at Geocities and people just didn't try again when it went away.

Kris was diagnosed at 46 and was 63 when she last wrote in her blog in 2021. There is a note there at the top about her having moved to alzheimersdisease.net where she was writing. So far I haven't found here there, though there appears to be many personal stories there. I have subscribed and will keep searching.

Mary was diagnosed with Alzheimer's at age 55, and her very professional looking site features photos and a daily journal. Before her diagnosis she had managed a liscensed day-care for infants. She has missed her work since having to give it up, but she fills that void now with three little dogs (you can see them in pictures at her site), an aquarium, and enjoys feeding birds and squirrels. Her husband, Dave, helps her with her page, and having been on Aricept for two years, she now can type and use the computer again. Thank you so much, Mary, for sharing your life with us.

Memorials:

Again, there is only one left of the Memorial pages from back then, and it is Fanny's "A Tribute to My Mother". But there was Jim Hunt's "Mother Love" which he created for his mother in memory of his grandmother. There was "In Loving Memory of William M. Schutte" which was created by Kim Schutte Holbrook, a former Director of my North Alabama Chapter of the Alzheimer's Association in Huntsville, Alabama, and her brother in memory of their father. There was "Guy Junior Boyd: My Father" by Linda, after her dad passed away at age 67. There was "All About My Grandpa" which Lisa did in memory of her grandfather. And there was a beautiful and very professional site called "Undying Love" done by Patrick Davidson in memory of his mother.

A Tribute to My Mother Fanny's Mother had Alzheimer's and passed away in June 1997. Fanny has created a beautiful site, with pictures of her mother, poetry, and beautiful angel backgrounds--a wonderful memorial for her mother.

Professionals' Homepages:

Barbara J. Bridges "BJB Services" was done by Barbara, an author, speaker, nurse, and professional Alzheimer's educator who spent fourteen years taking care of both her parents and wrote a book titled Therapeutic Caregiving: a Practical Guide. Marianne Dickercan Caldwell wrote Gone without a Trace which was published by Elder Books, and she was executive Director of The Home Safely Foundation and the creator of Birthnet for Wanderers, a free I.D. registry system for the dementia patient. Pam Haisman wrote Alzheimer's Disease: Caregivers Speak Out gathered from a survey on her Web site that many of us who were active online back in those years had responded to. "Joyce's Geriatric Reflections" included poems and other writings that Joyce shared about her work with the elderly as in the geriatric field. Pam of "Pam's Place on the Web" was a nurse who worked at a hospice, and her page was among those of us who were most awarded on the internet back in the day; she staarted the Hospice Care Ring that linked hospice related sites back then. Jacqueline of "Jacqueline Black's Alzheimer's Page" was a licensed social worker who specialised in care of Alzheimer's and related dementia patients as well as having an aunt twenty years earlier who had Alzheimer's. Nancy Walker created "Caregiver's Haven. She was a nurse who told the stories of her patients with Alzheimer's Disease and also added a poetry section and an art gallery to her site. Like my friendships with Dorothy Womack and Brenda Race, my friendship with Nancy also grew and carried over to Facebook until she passed away a few years ago. Sue Griffin was Director of the Laboratory for Research on Alzheimer's and other Neurological Diseases at GRECC, University of Arkansas, and her site provided a "A Caregiver's Guide to Alzheimer's as well as links to Alzheimer's and caregiving resources. Carmen was caregiver to her husband who had Huntington's Disease, another type of dementia (and one that hit my exhusband's family hard, losing his mother and three siblings to it), and she wrote the book "The Faces of Huntington's Disease". I'm thinking Carmen must have also been a health-care professional because I had included hers with the professionals sites.

Theodore Hargrove is a social worker and the creator of Inter-Generations, an internet guide to resources serving older adults in the Cape Cod area of Massachusetts. His Alzheimer's Disease section includes The "Alzheimer's Family Exchange Network", a bulletin board where people in the community can post their concerns.

[HerStory][My Journal][My Poetry][Special Times/Special People][Photograph Album][Reflections][Caregivers' Resources][Alzheimer's Research][Alzheimer's in the News] [Alzheimer's Association Chapters][Alzheimer's Organizations Worldwide] [Family Memorials] [About Me][Site Index][Updates][Home Page]