My Year to Remember with My Mother
Printed in The Troy Citizen (Troy, AL) in two Parts, February 10 & 17, 1999
She was just getting older, and we thought that normal aging was the reason for Mama's memory problems. For years she had repeated things she had already told, got things mixed up, and had come to rely more on my sister for things like balancing the checkbook and paying bills. Those kinds of things had never been a problem for my mother, who had always been great at math, though she didn't have the writing skills I had. We should have known something was wrong when her math skills began to go.
I was almost finished with my first semester of graduate school at Florida State when Mama had a stroke. After a brief visit home, I went back and finished the semester, and stayed through another year of school and work, though it seemed my feet were stuck in mud and I wasn't progressing; All I could do was think of Mama and how much I needed to be with her. My sister said she would take care of her and that I should stay in school. She hired a sitter to be with her in the daytime, and she was with her all night. In the summer, when she wasn't teaching at the local elementary school, she was with Mama 24-hours a day.
A year and a half passed, and my mother, not recovering from the stroke, had been diagnosed with dementia of the Alzheimer's type. My sister had been her caregiver for as long as she could, so I left FSU, needing 12 more hours to graduate, and returned to Heflin (Cleburne County) Alabama to be my mother's 24-hour a day caregiver.
I knew so little about Alzheimer's that I thought my coming home would make my mother better--not that she would get well, but maybe she would be happier and the behavior problems would cease. I was my mother's baby, her youngest, the one she had spoiled rotten. Surely she would be happy that I had come home.
As I packed to leave Florida, I sent her flowers with a note, "I'm home to stay!" She had not been aware that I had already been moving my things in, storing them in the attic, for months. She would be so happy, because this is what she had been asking me to do, over and over again.
She cried when we read her the note that was attached to the flowers. She seemed to know me that night, as she always had seemed to when I visited. But by the next day she had forgotten me; I was no longer her daughter. To her for the next year and four months I was just one of "the girls"; She seemed to think there were several of us there with here.
I tried so hard, and sometimes I think I must have tried too hard, and she sensed my nervousness and worry--and it only caused her to be more confused. We did have a lot of good times mixed in with a lot of bad times, and both of us especially enjoyed our walks outside to see the flowers I had planted for her. My sister and brothers were there for me, too, and the Home Health aides and nurses who visited, and "Caregivers" my Alzheimer's support group in Annistion was always a source of strength and encouragement for me.
Though we had my mother on a nursing home waiting list, both my sister and I turned down beds when they came open, because we just weren't ready yet. But we both were so tired in the winter of 1995, and as the family got together for Thanksgiving, whispered conversation revolved around something having to be done soon.
My sister-in-law had just completed her nursing degree and was working at a nursing home about 20 miles away. She said it was such a good nursing home, one of the best in the state, and she would see if there was a bed open for my mother.
There was, and my mother went in the nursing home on the day after Christmas in 1996. Though my family said it might be easier to take her there before Christmas, I just couldn't do it.
Mama got sick with pneumonia after her first week in the nursing home, and she nearly died. She got better, but never was as alert or able to communicate as well as before. She did have some good times when we visited when she seemed to love being there, and my sister-in-law said she got so excited and clapped when the cloggers and line dancers came to entertain them.
But then she started fading again. It seemed she could hardly stay awake the last Sunday we visited. It was just a couple of nights later when she died--on April 23, 1996. She'd just had her 80th birthday on April 6.
Being my mother's caregiver was one of the hardest things I've ever done, yet putting her in a nursing home was still harder, and her death broke my heart like nothing before. For several months, as I sat and tried to work, tears would stream down my face. The grief and guilt were overwhelming at times.
In the summer of 1996, I began to seek out support on the Internet, and I found that in the Alzheimer list, alt.support.grief, and Grief Net, as well as information on web sites of the Alzheimer's Association and other organizations and individuals. I also began learning a little HTML, mainly by looking at the source code of other pages to see how they were doing it.
I wanted to do a web page, and my Internet Service Provider, HiWAAY Information Services in Hunstville, answered all my questions and helped me get my page uploaded. It was just a couple months old and consisted only of a few links to Alzheimer's web sites along with my poems, pictures of my mother, and just a month or so of my journal entries, when HiWAAY awarded it as the "1996 Best of HiWAAY Homepage of the Year" in August 1996.
There have been others: USA Today Hot Site, a review in The Net Magazine, among others, including an article in a very popular Japanese newspaper, and most recently, The Homepage Hall of Fame on ZD-TV's cable show, Internet Tonight. People have praised me for what I'm doing, but I always tell them I did my site for a selfish reason--to help me get through the grief over all that happened to my mother. I'm glad that my site helps them, but I doubt it's helped anyone more doing it helped me.
Over the months I got better and grew stronger, and in January 1998 I went back to graduate school, taking my last twelve hours at the University of Alabama, commuting once a week for class as I worked a couple of positions in Decatur. I completed those twelve hours in December 1998, transferred the credits back to Florida State and graduated. And in January I moved to Troy to begin working as Cataloging Librarian at Troy State University.
I am so glad to make my new home in this area because the Dothan Chapter of the Alzheimer's Association was so helpful to me when I was with my mother. Kay Jones, the Director, sent me a copy of "The 36-Hour Day" as soon as I calledher asking for help, and the newsletters from the chapter were always a source of encouragement to me.
I didn't realize, though, that there would be someone at work who had lost someone to Alzheimer's, and she would want me to help start a support group for caregivers. Ann Marie's office is next to mine, and her dad died of Alzheimer's. She has been active in the Alzheimer's Association, raising thousands of dollars each year for the Memory Walk. She and I are starting a new support group in Troy, with the first meeting scheduled for February 16.
Kay Jones, the Director of the Alzheimer's Association in Dothan will be supplying us with materials, and she will also try to come to one of our meetings to speak to the group. I will be bringing books from my personal library as the beginnings of our Caregiving Library, and these may be checked out at the meetings. Ann Marie and I both are in good positions to see what books and periodicals are being published and what videos are being produced, as we work at the Troy State Library, and we can share these. Having a web site and knowing a lot of other net friends who research the Internet for information on Alzheimer's, I know of many resources I can print-out and share. Poetry and children's stories on Alzheimer's are sent to me, and I think that I will read things like this to the group at times. Our meetings will be a wonderful time to share information and to share our stories, where caregivers come for a little respite, and when they go home, the will feel more informed, encouraged, and a less alone in what they are going through.
I invite all caregivers, all family members of people with Alzheimer's and related dementias, please come to our Tuesday night meetings once a month. We've been there, we know what you're going through, and we want to help.
Our first meeting is Tuesday night, February 16, at 6:30 p.m. at Troy Bank and Trust.
( If you have Internet access, you can view my web page at: http://www.zarcrom.com/users/yeartorem/ )