To MFS: I figured out not only a brand new way for everyone in the family to keep up with us...
...but also a central place to store important information for easy access by everyone if anyone should ever step in for me. I started an online "Caretaker's Journal". Have you ever heard of weblogs (it is all one word, now, I think, although it started out as two; also called a "blog"). Well, they are web journals that, supposedly, anyone can have access to, unless you privatize it, which I haven't. It usually includes the activation of some sort of software that allows the owner to post entries to the journal, which are timed, dated and published at the person's own website. My ISP provided weblogging software allows me to create a variety of pages. You can also upload your own hand coded html pages. I will probably be doing that for some of the site, soon. Their templates are not at all flexible, but it allows a certain uniformity to the presentation.
    Anyway, I post in my journal at least once a day. It is always about Mom's day, Mom&Me, just whatever I think of writing. I purposely include detail about doctor's visits, test results, and lots of funny stories, conversations with people, musings, etc. Sometimes I write out in the journal the things you and I used to talk about and write about. When I started doing this I became curious about the existence of other caretaker/giver journals on the web. There are a fair number of eldercare-related website, even though Web of Care is gone. And some of those have places for members to post their caregiver journals, so doing this is not unusual. All of them are conceived completely differently than mine, though, and most don't have much material. I started it in the middle of May, then stopped it for a month, then restarted it in the middle of June. I've added lots of things. There is a complete Mom's Medication Page that includes all kinds of information about and besides her medication schedule. It also includes decisions made about the administration of certain medications, supplements, etc., records those medications to which she reacts badly, gives countermeasures to alleviate the need for some medications, and I update it scrupulously. That is there for everyone's edification, including mine.
    It will also include pertinent experiences we have with health care providers that I think everyone should know about. It will include, for instance, at least mention of my review of the Colonoscopy Decision (which is an open decision). That, however, a lot of it, will be covered in another part. MFS, because of the wealth of information and anecdotes contained in the emails I've written to you and to MFASRF, and because I think that making those available not only to our family to but anyone who is wondering about what eldercare is REALLY like, or wants to read something within which they recognize themselves, their loved one and/or their situation, I've begun scanning (literally, by using search words like "mother" and "mom") all the letters I've written to people about Mom of which I still have copies (I lost some when my machine crashed in December; which is probably good because I've got loads of stuff as it is) pulling and compiling those sections. I'm publishing them within these journals site as Histories. I want to give both an accurate and detailed account of Mom's and my caregiving experiences, so I am including a lot that gives a flavor of relationships and relationship events that happen within the family, anecdotal accounts of Mom's "progress" through old age, accounts of my personal reactions to situations, etc., as they crop up. I also have an Information & Resource page. It has very few links, so far. I am trying to get this site listed with some of the eldercare publications on the web. Diarist.net has listed it, and one eldercare site has responded that they would be "honored" (probably a stock response) to list my journal, but it hasn't gone up yet. There are a few others I've contacted, as well, about listing it.
    In The Histories, by the way, I've disguised people and have only glossed over heavy duty relationships and relationship events. I also do not include other people's letters. In some cases I will be including notes I occasionally write to myself about Mom. I don't want to hide the stresses that a caregiving situation adds to a family and I don't want to air dirty laundry, at least not with the name tags attached. I think I'm being careful.
    Anyway, you'll note, when you get there, that there are already volumes and volumes of words. I really am not expecting anyone, friend or stranger, to actually read the journal all the way through, especially since it is continually expanding, so I've added a really good, site specific search engine. I reindex the site at least once a day, so it is always up-to-date. MFS, you can type in anything and it will bring up locations of where that thing has been written about. Say, for instance, you want to review blood test results. Type in "blood test", or, more inclusively "blood", in either a simple search or an advanced search, and you instantly have access to a short history of Mom's blood tests! Although I do not have these specific incidents in yet, say you want to look up and see when it was that Mom was having very bizarre episodes (burning toilet paper, trying to smoke cigarettes covered with Taco Bell Mild Sauce, etc.). Type in anything you can remember, "toilet paper", "matches", etc., and you'll probably find that episode, and it will be dated. Well, not those, yet. I'm just now compiling 2001, and that was the year those happened, so those haven't been uploaded, yet.
    Aside from helping to bring caregivers out of the closet, so to speak (although our situation really isn't that dramatic), I think it will be a wonderful way for the family to keep up with Mom and her journey. I want everyone in the family to at least know about it, even though they may not often go there. Just to keep it active enough to make sure places who list journals will consider it a worthy entry, I have and will be posting to it every day, if nothing else. Aside from it keeping a running tab on Mom it also is wonderful therapy for me. It allows me distance, which I sometimes sorely need.
- posted by gail rae @ 08:42   email...this post