"The Wind Beneath My Wings"
Pages by Family Caregivers:
Bob Hoffman's Family Homepage
Bob's wife, Shirley, had early onset dementia and was was only fifty years old when she was diagnosed.
Bob sharer stories of other early onset victims and has a list of email address of their caregivers at
his site which has received a four-star (the highest) rating from Mental Health Net. Bob also wrote
a column for Caregiving Online and he was chosen as
a Caregiver of the Year for 1997.
Shirley passed away on August 1, 1998, and Bob's site has become a part of the
Minnesota-Dakotas Chapter of the Alzheimers Association Web site.
Susan's Alzwell Home Page Another site rated 4-Star by Mental Health Net,
Susan's page gives many opportunities for feedback, lets you tell your story, do a memorial, share a poem, and even write on "The
Anger Wall". She began the "The Caregiver's Ring", one of the first of it's kind,
to bring together home pages about caregiving and to make them easy to find.
Susan did all of this while being caregiver for her mother-in-law, who later passed away.
Susan's site has received numerous excellent reviews and awards.
and recently it has joined forces with ElderCare Online to become even
more effective as a community for caregivers.
Denise Cooper's Coping with Alzheimer's Disease
Denise has been her mother's caregiver. She has a very touching page that features her journal entries and also an insightful page called
"The World through My Mother's Eyes--What She Would Say if She Could." Denise's page was also rated tops
by Mental Health Net, Suite101, and others. Many of us would say that a mother with Alzheimer's is about
all we can handle at the time in our lives when we are caregiver, but Denise has had far more to contend
with at the same time. She was diagnosed with lung cancer a few years ago. She continued to care for
her mother at home as long as possible, until recently when she had to let her go to a nursing home.
Denise, who passed away on April 8, 2002, was a very special caregiving heroine,
and she will be remembered forever by all of us who have
visited her site and read her journal again and again.
Marilyn Sheaffer's Alzheimer's Disease in Our FamilyMarilyn's
mother had Alzheimer's and died May 15th, 1998. Marilyn has been sharing her caregiving experiences and helpful information at her site for
several years now. A big beautiful picture of her mother at the top of her main page welcomes us, and her site leads
us to many more informational and inspirational pages.
Sandra Cobb's A Map for the Journey
Sandra's dad has had Alzheimer's for eight years now, and his mother died from this disease. He and his wife, both in their 70s, had been her caregivers.
Sandra's Alzheimer's Page is packed full of all kinds of helpful information all kinds of helpful information.
Kate's Place
Kate was her father's caregiver, was her mother's caregiver, and altogether has spent fifteen years dealing with their care. Kate's Place
place is a wonderful one, full of information, support, and inspiration. Music therapy and pet therapy are a couple of topics covered
at this site, as well as caregiver guilt and how to find respite.
Sharon's Place's Grandma's Page
Sharon is caregiver to her mother who has Alzheimer's and is totally bedridden because she has forgotten how to walk. Sharon says that
in the few years, her mother has become more like her baby than her mother. Yet, she is aways cheerful, and that's what matters, says
Sharon. Visit Sharon's site and see the beautiful picture of a smiling Grandma with her grandkids.
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)". Another unique page at her site, and one that is very needed,
is her Kids Page on Dementia that explains
to children what is happening to a grandparent and how they can help with activities, and even a gift
they can make, starting with a print out from this site. Carla invites kids to click on her email address
and send in their stories about the loved ones with dementia. This is a very creative and unique page--Thanks
so much, Carla!
DOREID Alzheimer PagesWhat a wonderful site this is, full of information about not
only the states of the Alzheimer's patient, but also the emotional phases that caregivers go through.
Reid and Dorothy S. Craig have shared knowledge gained through experience as caregivers for Dorothy's mother, and their Circle of
Life with the Alzheimer's Patient is an excellent presentation of the emotional phases of caregiving.
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 has a local "Alzheimer's Outreach", a local support group in her town, where she provides information and support for many. Her strong and growing group is amazing too, as you
can imaging it would imagine it to be from viewing her site, and people drive many miles, from around her state, to be at her meetings. Thank you Marsha (aka Tay) for all of the wonderful and amazing things you are doing to help caregivers!
"Meet My Grandma" by Tobi is a beautiful expression of a granddaughter's love and concern. She shares a picture of herself with her Grandma, and she relates fond
memories of growing up with her grandmother who lived with her and her parents. She tells of playing games with her, and of her grandmother watching her leave on the school bus every morning.
She describes the changes, and how she wishes she had her Grandma back as she was, of how Alzheimer's is for caregivers and families the "Long Good-bye", saying good-bye to our loved ones every day as they forget more and
more.
The Long Good Bye :
Searching for Comfort, Courage, and Strength Penny Klein 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. Thank you, Penny, for sharing.
Bubblehead's Page
Edyth Ann, aka Bubblehead, is very active on the Alzheimer List and in the CANDID chat, and she is
caregiver to her mother-in-law, Milly. On her homepage, Edyth Ann shares what she has learned about
Alzheimer's and caregiving, and as well as being in the CANDID chat most nights, she also has her
own chat on her homepage. At one time or another, many of us have been "adopted" by Edyth Ann,
who freely shares her life with us. Thanks Bubblehead, for being there for us!
Dorothy's Womack's Page
You've enjoyed her poetry at her
Reflections at Marsha's Alzheimer's Outreach,
at A Window on My Mind, and here in Alzheimer's Contributed Poetry
at this site. Now you can read the book of her experience as her mother's caregiver through her book Passage Into Paradise,
now posted at her web site. Dorothy has also begun the PASSAGE
discussion list, a Christian support group for both present and former caregivers after caregiving.
Nancy Walker has just begun a new PASSAGE site for
this group, which was begun by Dorothy. Thank you so much, Dorothy, for sharing your story and for
all that you are doing for others.
Carolyn Haynali's shares the
comfort her faith gives her at her site, "SHEKINAH GLORY"
God's Presence-- A Place To Rest. Here she shares her caregiving journal, as well as her poetry which you can at several other sites including
The Poetry of Carolyn Haynali at the PASSAGE site. Carolyn is also one of the moderators on the PASSAGE list, where she often shares her poetry, and her cheerful
morning wake-ups, scripture, and prayers are an encouragement to all on that list. Thank you, Carolyn, for sharing yours
and Chuck's (husband's) story, and for letting your light shine to all.
Brenda Race's poetry
has been enjoyed by many at her Insights at
Alzheimer's Outreach, as well as here in the Contributed Poetry,
A Window on My Mind, and at
in The Poetry of Brenda Race at the new
PASSAGE site. Now her at Poems, Prayers, and Promises, her new site. Brenda and
I have a lot in common besides our names. Brenda's mother, who has Alzheimer's, has been in a nursing home since Dec. 1998.
Brenda is also a moderator on PASSAGE. Thanks so much, Brenda, for sharing your beautiful poetry.
Joanne's Journal, a site created by
Joanne as she copes with her mother's Alzheimer's. She is learning well, for she says "Love will endure.....
I notice while visiting with my mother that a tender touch, a kiss, a hug will make her feel calm, a sudden
change takes place, the look a fear or anguish diminishes and a smile appears on her face." Joanne's
page features links to other informative sites, including some done by Early-Onset Alzheimer's patients.
By People with Alzheimers:
Diana Friel McGowin
is not only the first person with Alzheimer's to do a homepage, but she's also the first one to write a book about
her experiences with this disease. Her book, Living in the Labyrinth is a best seller that has been published in eleven languages! Diana is an early onset Alzheimer's patient, diagnosed at the age of 45, and she has a chat
group on AOL for people with early-onset Alzheimer's. Diana, or LILAUTHOR1, as she is known online, has recently updated her homepage, including a picture of herself and
a wave-file that lets you hear her voice. You can write to Diana at: lilauthor1@aol.com.
(Don't forget the 1 after lilauthor.)Thank you so much, Diana, for sharing yourself and your journey with us.
Tim Brennan is a wonderful poet and writer. Two of his poems are here in the contributed poetry section
at my site: My Caregiving Friend and A Very Good Day,
and he has articles at the Virtual Law Office site. Like Diana, Tim has a positive attitude that gives hope to all of us who are children of
Alzheimer's victims. As people at risk, it is wonderful to see such remarkable people who are already diagnosed who are still doing what they can to help others. Thanks so much for sharing your poetry and articles, Tim.
Laura Smith is taking Aricept and feeling much better, even beginning her own homepage, complete with a journal.
Laura began the CWPML (Coping with Personal Memory Loss) support group/mailing list. Her descriptions of where she lives, her border collies, looking for early spring flowers, and the deer she
sometimes sees--paint a beautiful picture of her surroundings for us. And like Diana and Tim, Laura shows us the beginning of Alzheimer's isn't the end of the world, and there is
so much the early-onset victim can do, especially now with the new medications. Thank you Laura, for letting your light shine.
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:
Jim Hunt's Motherlove
Jim Hunt created this page for his mother and in memory of his grandmother who had Alzheimer's.
It is a beautiful memorial, expressing the losses at all stages, yet the beauty that remains in life and in
the memory after the person we've loved is gone.
In Loving Memory of
William M. Schutte William M. Schutte was the father of Kim Schutte Holbrook, the former Executive Director of the North Alabama Chapter of the Alzheimer's Association.
Kim and her brother did this loving memorial which features a wonderful slide show of photographic
memories and a message-board where others can leave their memories. Kim's father died in August 1997.
Guy Junior
Boyd: My Father Another daugher of Alzheimer's, Linda did this beautiful memorial page for her father who died at age 67.
All about My
Grandpa A granddaughter of Alzheimer's, Lisa did this page in memory of her grandfather. As well as being a memorial page, this page also lists the warning signs of Alzheimers
and activities for Alzheimer's victims.
Undying Love
The most beautifully and most professionally done site I've ever seen has been done by Patrick Davidson 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, as he expresses the emotions all of us caregivers and family members know. The beautiful way this story is told moves me to tears, again and again, every time I visit
this wonderful site.
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
Barbara is an author, speaker, nurse, and professional Alzheimer's educator who spent fourteen years taking care of both her parents.
Her page tells about her book, Therapeutic Caregiving...A Practical Guide..., and she has written a very helpful
article on communicating with the dementia patient. Barbara also is available for workshops and media interviews.
Marianne Dickerman Caldwell is the author of
Gone without a Trace, published by Elder Books.
She is Executive Director of The Home Safely Foundation
and the creator of Birthnet for Wanderersa free I.D. registry system for the dementia patient.
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.
Alzheimer's Disease: Caregivers Speak Out
is a new book Pam Haisman has written, including information gathered from many of you as you took the survey at her website. Read the stories shared by other caregivers and learn from Pam's professional experience
as she shares techniques for better communication and methods of creative caregiving.
Joyce's Geriatric Refections
Joyce is an RN working in a rural nursingfacility. All of her nursing experience has been in the geriatric field. she shares poems and other writings that show how she feels about working with the
elderly. These readings also give us some insite into what it must be like to be old and no longer well.
Pam's Place on the Web
Pam is a nurse who works at a hospice, and her page has been one of the most awarded on the internet. She has a wonderful Hospice Page that also
includesCaregiver Resources, and she has recently started the
Hospice Care Ring. I love the Special Poems
at Pam's site, the first of which is really relevant to Alzheimer's caregivers as well as nurses.
Jacqueline Black's Alzheimer's Page
Jacqueline is a licensed social worker who specializes in the care of Alzheimer's and Related Dementia.
Her aunt had Alzheimer's twenty years ago when less was known about it, and Jacqueline doesn't want anyone to have
to suffer as her aunt and the family did then. She welcomes your input as caregivers.
Nancy Walker is a nurse
who has taken on Alzheimer's Disease as her cause, and she is a champion for Alzheimer's patients and caregivers.
at her Caregiver's Haven. Her personal
site, The Garden is also a wonderful site, full
of inspiration to help caregivers cope. On both these sites, Nancy tells the story of her work with Alzheimer's patients
and shares the writings of caregivers in her Poetry Niche, and recently has also added an Art Gallery.
I've gotten to know Nancy well lately on the PASSAGE list, and I'm proud that she is also sharing my
Message Board, helping me to answer questions that caregivers leave there. New!!!-- Nancy has just created
the most wonderful new PASSAGE Site! I am grateful
for all of Nancy's hard work on this site, and I know all of the PASSAGE members are as well. Thank you Nancy, so very
much, for all that you are doing!
W. Sue T. Griffin, Professor of Medicine
Sue is the director of the Laboratory for Research on Alzheimer's and other Neurological Diseases at GRECC, University of Arkansas, and she has a very nice site
presenting a lot of helpful information about Alzheimer's.
Marci's The Elderly Place
Marci is a recent graduate with a Bachelor's of Social Work and a certificate in gerontology.
She is interested in respite care, which she sees as so important for family caregivers in postponing the
nursing home decision so that the person with Alzheimer's can stay at home as long as possible.
She has an exellent Caregiver's Guide to Alzheimer's that includes
definitions, signs and symptoms, behaviors, and communiction tips, and she also provides links to other Alzheimer's Disease and
elderly care resources.
The Faces of Huntington's Disease
is a new book by Carmen, who is her husband's caregiver. Huntington's Disease is a hereditary dementia-
causing disease, and Carmen is helping to raise an awareness, through this book.
Others There are other personal homepages here that I haven't had a chance to add on this page yet. These are listed at the Alzheimer Page at Washington University at St. Louis, home of the Alzheimer List. and also at my Top Alzheimer's/Caregiving Sites List
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Copyright © 1996-2005 Brenda S. Parris
Background and graphics Copyright © 1999 Brenda S. Parris
This page began August 1996 and was updated last January 5, 2000
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