"Stand by Me"

March 7, 1999

Though I've managed to do some updating in the past month, seems like I'm just too tired each time to come here and tell you about what I've updated. I shouldn't be so tired now. School and working two jobs are over. As well as is caregiving, and I know how tiring that is for all of you, because I've been there.

I think I forgot to tell you who the January Remembering to Care Award winner was. It was Sandra Cobb's Alzheimer's: a Map for the Journey. Sandra's dad has Alzheimer's, and her web site is definitely a map for the journey, with important information about what to expect all along the way.

Then in February, the winner was Patrick Davidson's Undying Love, the most beautiful and professionally done memorial site I have ever seen. Patrick did this site in memory of his mother, who had Alzheimer's. Though I have posted his site with the other winners, I haven't been able to find his email address, so if any of you have it, could you let me know. As with many of the sites I've awarded, I'm kind of ashamed of the little award graphic I send out. I really feel that way about Patrick's wonderful site, and the little homemade graphic is just my way of showing my appreciation and letting them know I've linked them with the other winners.

New in the Contributed Poetry (and stories) section is Grandma Doesn't Remember Me Anymore by Lianne Skill. When Lianne's mother sent this to me and I asked if she wanted it added in the contributed section, I asked Are you sure?, because this is something I think is very publishable as a children's picture book. It's a wonderful story, and a true one in Lianne's family.

I've added a Message Board where you can share your thoughts, feelings, poetry, information about favorite books and websites, whatever you'd like to add. I've been thinking about doing this for a long time, but with being so busy in school and with work the past year, didn't think I could keep up with it, but now I've finally added it. You can also go directly to the board.

Another place to share your thoughts, to ask question, to give or get support is the new mailing list created by Dorothy Womack. It is called Passage and was begun to help people in dealing with the end stages of Alzheimer's and life after caregiving.

A nurse I met on the Passages list is Nancy Walker, and today I've added a link her site where she crusades her Cause of Alzheimer's patients and victims and caregivers, and offers a Caregiver's Haven. Wonderful sites--Thanks, Nancy!

I've started a page for the local support group that a girl at work and I have begun in our town. I've also begun adding my Articles in a local newspaper as they are being published. Tomorrow I'm going to a workshop for support group facilitators, and may get some good notes to add as well. I'm really excited about all the opportunities locally. I moved here for a new job but didn't realize there would be so much I could do for caregivers here. Seems like it was just meant to be.

Last, but not least, I've begun a Please Pray for Denise page, linked from my main page and from my Candles and Causes pages. Denise Cooper has a web site: Alzheimer's: Coping with Alzheimer's which has received many awards, high ratings, and good reviews. Though she is still her mother's caregiver, Denise has been diagnosed with lung cancer. Her latest entries in her Journal tell about her diagnosis. Please keep Denise in your thoughts and prayers every day, as she now has this terrible disease to deal with as well as her mother's Alzheimer's.

I think that's all the updates for now, although I have updated several pages--just did a search recently for "alzheimers and caregiving" and added just about everything I found on the appropriate pages. I know, according to some, there would be more value to my site if there were annotations or brief descriptions for every link, but I just haven't had the time yet. There's so much I should do to make this site better, so many ideas I have, but I just can't find the time or energy to do them. But at least I'm doing something.

By the way, there have been several who have told me I inspired them to start a web site. It seems like everyone who does approaches it all in a new and different way and adds new features that others haven't thought of. So now, let me inspire you. You have your own story, your own way of telling it, something special that you can add, so go to my HTML Help page, visit the tutorial sites to learn a bit of HTML, get yourself some web space, grab some nice graphics from the sites linked there (and remember to give the creators credit with a link to their sites), and get started on your own page. Let me know if you need help, and when you get it uploaded, let me know the URL (web address) so I can link it here (one page where I do actually include site descriptions, because these are so special). And if I forget, keep reminding me till I do link it (sometimes I get busy and I do forget).

Now before you leave, sign my Guestbook and tell me about this page you're planning!

February 10, 1999

In the past few weeks I've gradually updated severally pages a little, checking the links and adding a few more, especially the Alzheimer's in the News and Caregiving Resources pages. I've also added another new poem by Dorothy Womack in the Alzheimer's Poetry section: Most of All, and this is one Dorothy wrote just for me! She wrote it as what my mother would say to me, and as you can imagine, I really cried when I read it. Thank you, Dorothy, so much for this poem. Dorothy also has a site herself now, a page where she offers her three books. I've just received two of those in the past few weeks, and read them, and loved them, and I'll try to have a review for you as soon as I can.

I have finally written a couple more Book Reviews. I should have written the review of Faces of Huntington's months ago, after Carmen Leal-Pock, the author, sent me a copy--but I was just so busy with school and work. I finally have it there now, with a link to Carmen's Faces of Huntington's site. As Carmen has said, "Though the name of the diseases are different, many of the symptoms, caregiving challenges, and emotions are the same." Carmen has done a wonderful job of raising an awareness of this related dementia, which is heriditary and not so well known as Alzheimer's.

I've also written a book review of Grandpa Forgot My Name, a children's book by Nancy Gruenwald, which she recently sent to me. It's a wonderful children's book, and I look forward to reading it to the group at one of our Alzheimer's support group meetings. Our first one is next Tuesday, and we are very excited about it.

More reviews will come soon, as I've received several other books from the authors recently. I love getting these books and sharing them, in my Bibliography, which I've also updated recently, and writing reviews on them, though I may be slow at getting that done sometimes.

Also more poems by Dorothy to come soon, and a poem (actually another children's story) that someone has sent, and I'm still, slowly but surely trying to get the broken links fixed and all the pages updated. It's a big job, maintaining a web site in my spare time, but it's worth it. There have been times I've thought of taking it down because I've felt (especially last year when I was back in school) that I just didn't have enough time to do a good job of updating it. But no--maybe it's not the best job, but it's something. And I've got to do something. One can't live through being a caregiver without being changed forever, and I think that one of the results very often is that we feel like we've just got to do something for other caregivers. I've tried here with my site, and will continue to. And now another opportunity has presented itself, a local Alzheimer's support group! Again, we welcome any suggestions any of you might have for our support group meetings.

January 27, 1999

No more updating done to the site yet tonight, but I'll get started on it in a few minutes. I just had to let you know some exciting news first--a little more about the support group meeting that a co-worker and I are starting. The first meeting will be Feburary 16, and my co-worker, Ann Marie, has arranged for a building, put an announcement in the local paper, talked to both local papers about possibilities for promoting Alzheimer's awareness in the area, and has been talking to the South East Alabama Chapter Director, in Dothan, about it and is arranging for her to come to probably our second meeting, and to be interviewed by a local newspaper when she comes! I feel like I haven't really done anything yet, but I plan to try my best to do my part at each meeting. I didn't feel like going to support group meetings after my mother's death, and I was so busy with working two jobs, and then this past year, going back to grad school as well. So I didn't get involved in the North Alabama (Huntsville) chapter other than walking in the Memory Walk the past two years and going to one conference, along with providing just a bit of space on my web site for materials they provided, meeting times, and announcements.

I was excited when I accepted the position at Troy State for more than career reasons and the fact that it was a nice small town I thought I would like. I'm also near the South East Alabama Chapter of the Alzheimer's Association in Dothan (well, kind of near--actually a little over an hour's drive away, I think), and they were so helpful to me. Kay Jones, the Director, helped me so much when I called her asking for help while I was my mother's caregiver, and she sent me a copy of The 36-Hour Day right away, as well putting me on the excellent chapter newsletter's mailing list. I was excited when I found out I was moving here, because I would have a chance to help this chapter a little, with the walkathon, and whatever else I would have time for, now that my life would be settling down a little and I would have more time.

I had thought I would like to get involved in a local support group, but I didn't realize I would be helping start one. My co-worker has tried starting one in the past but somehow it never caught on. I don't feel very skilled at this and am not sure I know what I'm taking on, but I do know that this area needs a support group. Ann Marie says she's not good at getting up in front of a group, and neither am I, in fact, she seems much more outgoing than I. But I can tell my story, my mother's story, tell them about books and web sites, and most important of all--I can listen when they talk. Ann Marie can tell her story too (her dad had Alzheimer's), and we can show videos, and invite in speakers, like Kay Jones. We can tell them about conferences, maybe provide transportation to some conferences and to the Memory Walk (by the way--Ann Marie raises a couple of thousand dollars for the Memory Walk each year!--and I thought I was doing good with my $200!), and pass out materials that the Chapter in Dothan provides us. I'm really excited about it. I know that many of you are probably much more experienced with this kind of thing than we are, so please send me ideas, suggest materials, or tell us your experiences. This is really important to both Ann Marie and me, and we really want to do a good job.

Ann Marie has called me twice at work lately (she leaves an hour before I do), once when she went to visit the local papers, with the announcement and to talk about promoting Alzheimer's awareness--she called me because she was so excited about it. And again today, she called and told me she'd just got the South East Alabama Chapter newsletter (I haven't got it yet; forgot to change address, and my mail is slow getting to me anyway since the move), and that on the front page of it, there was an article by me. I said "What?", and she said "Yes--It's My Support Group Meetings, and there's a poem by you inside, Come Spring!" Thank you, so much to Kay Jones for this wonderful surprise! I haven't seen it yet, but Ann Marie is bringing it to work so I can see it tomorrow. And Kay, I'd love to help any way I can. If you'd like some space here at my site, for announcements, support group meeting times, whatever--until you get a web site started for the Chapter--I'd love to provide that! Thank you so much, too, for all you did for me when I was with my mother--especially for that copy of 36-Hour Day you sent me!

I wasn't ready right after my mother's death; It took some time for me to heal. But I'm ready now. And I want to do all I can to help caregivers. And again, any suggestions, advice, information on how to start and maintain a support group are welcome and will be appreciated so very much.

January 26, 1999

I graduated Dec. 12 after spending a very hectic year back in graduate school, commuting 6 hrs. once a week for classes and working two jobs. And my husband and I moved from Decatur, AL to Troy AL during the holidays (actually didn't finish until the second week of Jan. and still aren't unpacked), and I began working at Troy State University on Jan. 4.

I love my new job and enjoy living in Troy, but I am soooo tired. I've fallen so behind on updating my web site, on answering email, and I know I still owe someone the Remembering to Care Award for December. I will try my best to award one more deserving site by the end of January.

I haven't managed to do much updating in quite a while, but I have added another one of Dorothy Womack's beautiful poems in the Contributed Poetry section. This one, "A Light on in the Window" especially touched me as I thought of my mother, waiting with the light on in the kitchen window when I was coming home, and then her coming to the back door, opening it, waiting to greet me with a hug. Dorothy's poem brought me to tears, again, and I had intended to add it before we moved but there was so much going on at the last minute, so much to get done (I didn't even have Christmas Eve or New Year's Eve off work). Anyway, I've added it now, and also on the pages with each of her poems, I've added a link to Her web site where she is offering three of her books.

In the past couple of days I have checked the links on a few pages, mainly Alzheimer's in the News, and Caregiving Resources and to update them a little. I'm also trying to achieve more consistency in my site, to choose some better backgrounds (I can never get satisfied with the ones I've made, so will try some others on some pages), and to take off the counters on all but the main page--in preparation for moving my site. Since I've moved away from the Huntsville area, I should move the site from my former ISP (who I am still paying though I no longer am using them as an ISP) regretably. HiWAAY Information Services has been a wonderful ISP and I really hate to move the site, but I suppose I must. I do have a lot of preparation to make though--a lot of counters to remove, and maybe some better organization, maybe a subdirectory structure, and I'm still looking into where I will move it. I will leave behind a re-direction and try to notify all the search engines and directories when it happens--which still may not be for another couple of months.

A few months ago, I was interviewed through email by ZD-TV's Internet Tonight about featuring my site on their cable TV show. We didn't have access to ZD-TV in Decatur (or at least I don't think we did--we didn't have TV cable there--didn't have time to watch for the last year, or the money for cable TV). We didn't plan on getting it after moving, at least not the first month, but just did it on impulse. We had just got it, and just discovered that the cable TV our apartment complex had carried ZD-TV, and had just watched Internet Tonight for the first time. And then the next night, about an hour or so before the show, saying that my site was going to be featured that night, on the January 15 show. It's linked there on their page, about half-way down in the center, for "Homepage Hall of Fame" for that day. I was really impressed and touched by the way they presented my web site, and when it was aired again three times the next day strugged to try to tape it but didn't make it: Left work at lunch to buy a blank tape, then discovered the cable for the VCR was missing, so my husband bought a new one, then we discovered we'd need a box from the cable company because the VCR is older and doesn't have enough channels. So if anyone happened to tape it, please let me know if I can buy a copy from you, ok? :)

It's late and I'm exhausted, again; actually I stay that way lately. It's like I made myself keep on through all last year with work and school, and then the moving, and now it's like I can hardly move. We have no furniture (were living in a furnished apartment in Decatur, and now are in an unfurnished one), and we're just waiting for my first paycheck at the end of the month before we can buy any. Sleeping on the floor hasn't really been restful, but soon that will change. Soon will be rested I hope and can get back to updating this site. More to tell you about an Alzheimer's support group a girl at work (her dad died of Alzheimer's) and I will begin locally next month; We're really excited about it. But so tired now. Thanks so much to all of you for being patient with me through the past year. Gosh, I'm sorry--I've even lost touch with some of you I was writing to regularly.

JoAnn--I've lost your email address again--please email me. Carol B., I lost your email address months ago. I found a card from you when I was packing, but I can't find it again now (with no furniture there's no place to put things and get organized)--please email me again. There was someone who wrote me about this time last year, about adding a poem to my web site, but then we had a computer crash (had two early in the year) and I lost it before I could add the poem or reply or print it out--Dear Sir, I didn't ignore you, so please write me again, ok? There may have been other emails lost with the crash. And there were a lot of you who signed my guestbook around Thanksgiving the year I started my page-- I wanted to let you know, too-- the guestbook service I was using then crashed (or intentionally lost everything in order to begin charging for the service). Things like this have happened all along, and there have been many times I've tried to respond, but your email has bounced back to me. Things like this, and then this year I've been so busy I've had the hardest time keeping up with anything (even lost a bottle of expensive prescription medicine once during the year and never found it); I'm so sorry I haven't been good at keeping in touch with so many of you. I'm sorry, and I'm going to try to do a lot better in the next few weeks and months. Forgive me, and write me again, ok?

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