Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
Well, at least for me. I have established a domain name for these journals. Unfortunately, I was not able to retrieve my former domain name, despite that its ownership by my previous hosting ISP expired as of 8/12/08. It seems that expired domains are held in a sort of domain limbo after expiration for 90 days, which I just discovered. Considering the present circumstances of my mother's and my companionship and my caregiving for her, 90 days is just too long to wait. I've already waited long enough to set up on an independent server.
The new domain name is very similar to my old: "themomandmejournalsdotnet.net". You'll notice that I have not established a link to it. I'm in the process of experimenting to regain my ftp publishing skills and in discovery regarding Blogger's handling of former Blogspot blogs. It seems that Blogger has developed a facility whereby former Blogspot blogs keep a placeholder that allows redirection to the new blog home. This redirection isn't automatic...you have to click a "yes" (or "no") button in order to be redirected. But, at least you'll get there. I haven't yet discovered how long this redirection service lasts. If and when I find out, I'll post that information here.
The process of transfer will be slow...it may take more than a couple of weeks, as I'd like to think that I'll be able to restore my files to my Mac, as well, within that time, and access my old reader list so I can notify everyone who left an email address with me at some time what's going on now. We'll see how that goes.
You may wonder why I'm switching back to an independent server, considering that Blogspot space is free but independent server space isn't. Two reasons:
- My former in-site search engine, which is superior, doesn't work with Blogspot occult blog publishing commands. This is a big deal for me because I probably used the search service more than any reader. Blogspot does have a search engine attached, but it is woefully incomplete, which I've discovered many times. It doesn't even respond to "tricks".
- I want to be able to quickly and completely back up my journals onto my computer without having to go through the possibly dangerous procedure that Blogspot has devised for this.
Speaking of which, this is part of why I am going to take my time transferring material. I want to fix as many broken links as possible immediately after transfer. I'm sure, for awhile, depending on how deep any particular reader decides to go back into posts, broken links will occur. But, eventually, everything will be fixed.
I will also be establishing a new domain email address shortly, which I'll publish here and to which I'll link the "Email......me" area over there to the right toward the end of the links section. However, I have no problem with people continuing to use any of the addresses through which they are used to contacting me. I retain them all (except my former domain email address) and check them all.
And, yes, I will be posting a review of Dancing With Rose soon. It seems that the process for getting permission to quote text from the publisher (which is required...author permission, alone, on this book, is unacceptable, according to the flyleaf instructions) is a bear, so I'm trying hard to write it without quotes. It's not the easiest process. As I write, I find myself accidentally quoting the book without realizing it.
Anyway, it's getting late and I've got to get some sleep. I have an important errand to run early in the morning (oh, but it is early in the morning, already...but, not late-early enough).
Catching Up #1
Some posts ago I mentioned that I wanted to post about some discussions that the Hospice Nurse and I have had over the last two visits. This post covers one of those discussions.
One of my concerns has been that my mother would outlive her Hospice prognosis and, in being evaluated for a continuation of Hospice, would "fail" to qualify. I've had this concern because my mother seems to be "declining" so slowly that her "decline" is almost imperceptible.
Our Hospice RN wanted to know if any biopsy had been done in order to reach the initial determination and I told him that none had. During our discussion of this at the first of the two visits I asked if there is such a procedure as a needle biopsy that could be performed on her, if necessary. He responded that, yes, there is. I mentioned that I would be amenable to this type of biopsy on my mother.
In the interim between visits I wondered why a needle biopsy, at the very least, wasn't done on my mother once the CT scan showed what appeared to be clear evidence of a tumor. So, as usual, I researched needle biopsies of the lungs. As I said to our Hospice RN when I told him, last week, of my research, "The Hospital made so many mistakes when they were treating her for what turned out to be pneumonia that sometimes I think, wouldn't it be funny if the diagnosis of lung cancer was a mistake?!?"
First of all, there's an excellent chance that my mother would be a poor candidate for this procedure because of the pain involved. The pain isn't, as I understand it, unbearable, but is sharp and definite. Although my mother used to react to pain stoically, now, even when verbally prepared for it, she almost always reacts physically. This isn't a good thing. Secondly and even more seriously, lung collapse is a frequent side effect of needle biopsies on the lungs. To quote Wikipedia (which is the less technical of all the research articles I accessed): "...collapsed lungs are more frequent and more serious in patients with severe emphysema and in patients in whom the biopsy is difficult to perform." Describes my mother to a "T".
So, last week I told our Hospice RN that I have reversed my position on needle biospy and would not approve it, and told him why. He didn't counter me. He's a great RN. He sits back, answers my questions, no more, no less, takes in what I have to say, then adjusts according to what I discover and what I have to say about where my contemplations of these discoveries lead me. This, by the way, is the reason I refer to him as "our" RN. He is a wonderful resource for me as caregiver, as well as for my mother.
In response to my obvious (but, gratefully, low level anxiety) about her lack of fitness for the usual Hospice qualifying procedures and what this might mean if my mother outlives her Hospice prognosis, he mentioned that cancer diagnoses are given a lot more leeway in Hospice, primarily because each occurrence of cancer tends to be unique. He continued that, if necessary, another CT scan would be performed to document growth of her tumor. Considering my mother's lack of fitness for general anesthesia, a biopsy requiring such would most likely not be required. Considering what I'd discovered about the dangers to my mother of a needle biopsy of her lung, he understood why I reversed my position on that procedure.
I'm very pleased to know that Hospice is much less likely to "go by" any kind of "book" in regard to keeping cancer patients on Hospice. Hospice medical care is exactly what she needs. It's exactly the kind of medical care she's needed for some time, in fact, and it is a relief to me to not have to fight the medical establishment for it any more. It's funny, too, because our Hospice RN mentioned to me as he left, last week, that it's not uncommon for his colleagues to wonder out loud why his patients don't decline. Although he answered this with a mere shrug, my guess is that he has a lot of cancer patients.
He also confided to me that, so far, Mom (and I) are "easy" because my years of medical advocation and caregiving have prepared me so well that I can handle a lot of things between Mom and me without outside intervention that are new and confusing to lots of caregivers. As I think about this, I realize that many, many people who are managing a loved one under Hospice are probably often caregiver "newbies" and are unprepared to think about either the death of their loved one or the care that their recipient might need. That hadn't before occurred to me. Last week, though, a blip occurred in my ability to handle many occurrences without outside help. At the moment, I can't remember what it was, it was that minor, but I called our Hospice RN and left a message to have him check back. Then, I calmed down and handled the situation lickety-split. I felt like a dope and apologized to our RN for calling. He told me that, throughout that week he'd gotten lots of similar calls involving people freaking over minor details of care...he blamed the moon. So, as it turns out, I'm a bit more comfortable, now, about the possibility that I might misjudge my abilities, from time to time, courtesy of the moon, and put in an occasional unnecessary call for help. That, as well, is a relief to know.
Two people I know have suggested, when I've discussed my anxiety about my mother's overt lack of very obvious decline, that I should lie about what I observe in order to keep her on Hospice. But, you know, aside from the fact that it would be difficult to do this considering how often Mom is monitored by our Hospice RN, I have a natural negative response to the idea of relaying information that isn't true, as this could alter treatments in a way that would not be to Mom's benefit.
Oh, one more thing. Happened today. I have to set this up a bit. At breakfast this morning Mom and I read a "Dear Abby" letter sent by someone who wanted to know how to handle a hypochondriac. "Abby's" response was to tell the culprit, the next time the writer saw her, how "horrible" she looked and how awful she must feel. "Abby" assured the writer that the hypochondriac would "love her for it," thus becoming much more manageable. Mom and I spent a fair amount of time reminiscing about her hypochondriac sister-in-law, remembering that, indeed, this woman always responded favorably to being told she looked bad. Later I escorted Mom in for her nap. She was very, very tired, even though she hadn't been up long and had gotten a good sleep last night. She noticed that she was slower "getting around" than usual and was finding it unusually difficult to "pick up" her legs as she walked. I had noticed this, too, earlier, and, just prior to her heading from the rocker into the bathroom, had offered the wheel chair, "just in case". Stalwart that she is, she refused, with a glance of consternation aimed at me. Anyway, to tease her, after she wondered aloud about the seriousness of her movement difficulty, I said, in a mock dramatic voice, "Well, of course it is! You have a horrible, debilitating disease and I doubt that you'll make it halfway to your bed before collapsing!"
She grinned, then shot me a look that I can only describe as cautionary and said, "Well, I do have lung cancer, you know."
So, she knows, now, and remembers, often enough to waggle her diagnosis at me in lieu of a scolding finger. I was surprised but not taken aback. It is, after all, her tumor. She has every right to own it and its effect on her.
So, on we go, Mom & Me & Mom's Tumor. There are times when I feel as though I should name that being inside her left lung since it is a definitive partner in our life...as it turns out, a long time partner.
Turns out, even without access to my Mac files...
...(that's right, I still haven't restored those files), after much fooling around in the archives trying to find what I thought was a third transcript (I misremembered how many podcasts I transcripted) I discovered an easy way to restore the Podcast index. I searched Google for a cached file of the old Mom & Me index page template and, damn, up it came! I had to change the two links to the transcripts to point to their new archive positions, but, other than that, it appeared intact. I guess it's true, you can find anything on the internet...even stuff that no longer exists!
We haven't done a Gene Kelly movie day, yet. Mom discovered that I'd taped Evan Almighty for her a while back. When she noticed it on the DVR index earlier today as I was scanning dance movies she asked about it. After I described it to her, including the controversy the film generated, she decided she wanted to see it first. I have to say, despite the spiritual silliness and confusion of the film, I was surprised how much I enjoyed Steve Carrell, so the afternoon wasn't a waste for me. Post-nap (we're doing those late, late days, again) we'll be watching a review of Gene Kelly's career that I recorded and, probably first, Singin' in the Rain, which I love inordinately, especially, like everyone else, I guess, the "Singin' in the Rain" masterpiece dance. Looks like we'll be lingering over Fred Astaire/Ginger Rogers and Gene Kelly for more than the weekend. Well, that's good. They are keeping my mood up.
Almost time for An Awakening, late supper and a movie. Or two.
I'm asking forgiveness from one reader in particular...
...of whose identity I am unaware, and a few others I've noticed, as well. It seems that, while I've been trying hard to keep up with changing urls on the index page of this journal, there's one that eluded me until just a few minutes ago: The url for the Apologia for these journals. I forgot to "send" the link to the proper archive. It's fixed, now, in case you want to go over there. So sorry about that. I also need to reestablish the links to the podcasts. I took those off some months ago in order to change out their server locations. I managed to do that, but, then, I got caught up in Mom's Pneumonia/Lung Cancer adventure and have been putting off resetting the podcasts. Think I'll start working on that, right now, while Mom's taking a nap.
Anyway, very sorry about the errant Apologia link! It's working, now.
Oh dear, what can the matter be?"
Actually, I know what the matter is. It involves a phone call, a dream, some points made in Dancing with Rose (which I have finished, about which I will be writing, probably later this week and with which I was fairly thrilled and, alternately disquieted) and probably "the planets", all elements converging sometime while I slept Friday night and throwing me into a horrible, sad mood before I awoke Saturday morning. I'm sure I'll post about that, later, but first, I want to write about the beginning of the resolution.
Off topic prologue: While I was searching for the lyrics to the song title I've used for this post (which is a song my mother started singing after I'd awakened her yesterday morning and told her that I was not in a good mood), I noticed some alternate lyrics (which, I assume, are accompanied by the same melody, but I'm not sure) I thought my readers might appreciate. The immediately previous link takes you to them.
So. Before I awoke my mother [an hour later than usual, when I thought I could face, with only slight difficulty, caregiver duties, which occasioned me discovering how to clean a particular item which I'd never cleaned and dreaded: Her bed wedge; turns out it was incredibly easy], well, you can read about that here, where I posted a bit about yesterday, since the entire day involved Mom's Movement Profile.
Super idea, even though launched in desperation, taping the Fred Astaire/Ginger Rogers movies. Although I wasn't sure they would do anything for me, they did. I'm still sloshing through the dregs of my mood, but at least I'm not in the teary doldrums. That helps. Today I'm taping TCM's Gene Kelly Day, for the same reason. It's just one of those weekends.
Again, I find myself stalling in awakening Mom, not because I don't trust that she'll come through for me again (companionship, even that which involves caregiving, is, truly, a two way street), I'm sure she will, even though I'm not feeling so awful that I'll be announcing my mood before she completely opens her eyes, but I'm continuing to slosh through Dreg Soup, so much so that, although my intention is that we won't take another Stat Vacation Day (which we did yesterday; it was liberating, but I haven't yet decided whether to extend this), I expect we will be eating fast food, Mom's choice. Oh, damn, that's right, I forgot to record Friday dinner over at The Dailies. Better get over there. It was another fast food night. She's been craving our Fast Food Rounds, lately, and I'd been holding off because of the desserts she's also been craving, but I finally relented Friday night.
Hmmm...anyway, I've written a bit differently than I expected, and, I see, with all the interruptions, I've accomplished little, so I think I'll sign off, correct Friday's Dailies entry, and awaken Mom, again an hour later than I intended but, considering how well yesterday went, I expect that we'll both be appreciative of this.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson