Published in Caregiving Newsletter (Tad Publishing Co., P.O. Box 224, Park Ridge, IL 60068), v. 3, no. 3, September 1997.

Online Caregivers

Remembering My Mother...Online

by Brenda S. Parris

Editor's Note: This month, we're pleased to welcome a guest contributor, Brenda Parris. Bob Hoffmann, Online Caregivers contributing editor, asked Brenda to share her experiences as a caregiver on the Internet. In addition to participatin in several online mailing lists, Brenda also has created and maintained her own web site.

In April 1993, my mother had a stroke, and several months later we learned that she had Alzheimer's Disease. We didn't realize until then that she actually had it for years, and that it was the reason for all the repeated questions and the declining abilities.

At the time of her stroke, I was a graduate student at Florida State University. My sister was with my mother the first year and a half while I tried to complete my degree. But I found it impossible to do; I was unable to concentrate. I was always thinking of my mother and feeling that I needed to be with her.

I also was a lab asssistant in the library school's computer lab. I helped students get online, and when no one was needing help, I surfed the internet myself. In those early days of the Internet, I sought information and support online to help me cope with my mother's illness, but found very little.

Although I didn't find an online support group like the Alzheimer's list that's available now, I did post my concerns on two favorite newsgroups: misc.rural and alt.appalachian. I titled the posts "Going Home", and I explained the situation and asked for opinions as to what I should do. I received many beautiful responses that brought tears to my eyes--people wrote about home, the love of a mother, and things that were more important than school and jobs.

So I came home to Alabama in August 1994, leaving behind the Internet in my friends' apartments and the computer labs on campus. I didn't have a computer of my own, and internet access wasn't available in the rural area near my small hometown. The wiring at my mother's old farm-house was so old and insufficient that it probably would have blown up a computer anyway. So my support and information came from my monthly support group meetings in a town 20 miles away; the home health nurses and aides who came to see my mother; and the books I read.

I was my mother's caregiver for a year and four months. In December 1995, I was so tired that my family became concerned about me. So we placed my mother in a nursing home. She died four months later, in April 1996. Soon after her death, I wrote this poem:

PRECIOUS TIMES

I cry a river
over times that are past,
when I held my mother's hand,
and when I made her laugh.
We walked and saw flowers
and listed to the birds;
She couldn't always understand,
but love didn't need words.
Even in the dark times,
when we were up through the night,
why didn't I see it?
Everything was right.
Why did I give up
and send her to a home?
She sat alone for a while,
and now she is gone.

Copyright © 1996-2005 Brenda S. Parris

A lot of people have told me that I did the best I could and that I shouldn't feel the guilt that comes through in that poem and the others I have written. The guilt, though, is one of the emotions that I think most all caregivers feel at some point. I think that my poetry expresses most of the emotions of caregivers and family members of Alzheimer's victims. That is why I wanted to share it-- to let them know they aren't alone in experiencing those feelings, and also to help others understand what Alzheimer's and caregiving are all about.

For months after my mother died, it seemed all I could do was cry. Getting back on a computer and having Internet access again helped. I found the Alzheimer's list, which helps others like me as well as those currently in the caregiver role. As I told my mother's story, some wonderful people shared words of comfort. I also found the newsgroup, alt.support.grief, and the Griefnet mailing list, which helps those suffering the loss of a parent as an adult, to be wonderful places to share and to receive help.

Then in July 1996, I began working on a home page in my mother's memory. I wanted to share her story through the poetry I had written and the journal I had kept while taking care of my mother. I also wanted to show pictures of her and to bring together links to Alzheimer's Disease resourses.

Working on this page, "A Year to Remember..." has helped me tremendously with the grief. I never expected the kind of impact that my page seems to have on others. I began my page for myself, as a way of dealing with the grief, and I thought maybe it could be helpful by bringing together information about Alzheimer's for caregivers. I didn't expect the kind of E-mail I get about my page. Often people write me that they are in tears as they read my journal. Some even say that they can't read too much because it hits so close to home. They will have to come back and finish later.

It seems that as many people in grief over losing someone to other disease visit my page as caregivers. I've also been surprised by comments from health care professionals (mainly nurses and nursing-home employees) who have written favorably about my page--some of them saying it helps them to understand better what Alzheimer's is like for families.

When I began my page, it wasn't quite as easy to find information about Alzheimer's on the Internet. Now there is so much that it's hard for me to keep up and to accomplish my goal of providing links to as many sites as I can find. I knew of a few personal homepages then, though Bob Hoffmann and Marilyn Schaeffer's wonderful pages have been around since before mine. Now there are many others, too, linked on my page at: http://fly.hiwaay.net/~bparris/homepages.html.

The Internet has so much information and support, and it is growing all the time. No one in the caregiving experience has to feel like they are all alone. They can find everything about Alzheimer's on the Internet--the warning signs, the stages, medicataions, activities for the patient, research into finding a cure--all of this and so much more. They can get online and post a problem or question on the Alzheimer * and Candid mailing lists, and quickly receive responses from other caregivers and professions. They can enter a chat room like the one started by Candid * and talk to others who are going through similar situations, or who have been through them, and to professionals who can tell them what should work. You can even communicate with some early onset victims themselves, who have started their own web pages. Sharing their stories, writing poetry, they give us a better look at what Alzheimer's is like for the victim, and what it may be like for some of us--children of Alzheimer's victims--if a cure isn't found.

I would also like to encourage caregivers to do their own web pages. HTML (Hypertext Markup Language, the authoring language for web pages) is so easy to learn. And, writing about your experiences or sharing pictures, poetry, or information about the disease does help--it helps both the caregiver and other caregivers and their family members and friends. Any of us who have pages will be glad to help anyone who wants to start a page.

Something so unfortunate, the cruel disease of Alzheimer's, has brought some of us new purpose by allowing us to share our own stories. I feel that my home page is a gift my mother left me, a gift that has helped me to survive the past year of grieving, and something that I hope is helping other caregivers to feel that they aren't alone in what they are going through. There is so much help and support available now on the Internet: So many web sites--so much information and so many people to say, "I've been there (or am still there), I know what you're going through, and I care."

*For information about the Alzheimer's mailing list, visit http://www.biostat.wustl.edu/alzheimer. To learn more about the Candid chat room, visit http://dementia.ion.ucl.ac.uk/candid.chat.htm.