The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

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.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Saturday, September 27, 2008
As the day has progressed...
...I've been adding information to the immediately previous post, as I remember this or that piece of conversation or information. I hope I don't drive those of you who subscribe through RSS crazy. I just want to be especially meticulous about reporting this episode, for myself, chiefly, as I imagine we have more episodes in our future, however short or long that future is.
    As I reported over at Life After Death Sentencing for today, Mom's restless night is dictating a day a bit less energetic than yesterday. She forced herself to stay up for the entire showing of Close Encounters of the Third Kind on TCM. Well, I don't think she had to force herself. The movie fascinates her. It's one she never remembers seeing. Today, her comment was that the movie is "mysterious". "I'm not sure where this is going," she mentioned.
    I'd already noticed the tiredness pulling at her lower lids, swelling her eyes. "Are you bored?" I asked. "I taped this, so if you want to come back to it, it's okay."
    "Oh, goodness, no! I want to see if I can figure out what's happening!" She stayed with it all the way through.
    She's sleeping, now, a much more restful sleep, I can tell by the monitor, than happened last night. It occurred to me that last night was analogous to the breathing crisis she had in the hospital late at night after the first day of her treatment for pneumonia: The anxiety about which I was contacted by the nurse in the middle of the night when Mom was having a breathing crisis and calling for me. The nurse was seeking permission to administer Ativan or Xanax or morphine, all of which I vetoed in favor of me coming in and holding Mom's hand, sleeping right by her side and reassuring her, which performed all the tricks that the medications were supposed to have performed. The difference, last night, was that Mom was in her own home, in her own bed, The Little Girl was sleeping with her, and Mom knew that I was near and listening (she is quite impressed with the monitor and has not forgotten that I listen to her when she's sleeping, so I keep her updated, after each sleeping session, on what I hear) because I went into her a few times during the night, provoked by what I was hearing on the monitor, to see how she was doing, help her change position for easier breathing and to reassure myself and her that "everything is fine", so there was no anxiety involved in her crisis; just restlessness.
    Funny thing, too, about the monitor. Since I've insisted on having it on and close every time she's sleeping, I've become acclimated, very quickly, to Mom's breathing moods. I was hoping this would happen. Although we've had it less than a week, I find I can fall asleep easily, knowing that my brain will register anything that sounds odd and alert me to awaken and check on her. I can even tell when she's merely coughing in her sleep versus when she's coughing because she's arising. I hear the oxygen compressor cycling, too, and sometimes I here her talking to The Little Girl. This morning I heard what I thought was was this, so I peaked in. She was fast asleep, though, and I realized, with surprise, that she was talking in her sleep. Unfortunately, the sound quality of the monitor wasn't such that I could make out what she said. I've never known her to talk in her sleep, though. Possibly, it's something that she does only when she's restless.
    Tonight we're planning pizza night and a showing of The Sting in honor of Paul Newman. Mom was as saddened as I by the announcement of his death. It was her idea to honor him tonight. Although we only have one of his movies in our collection, she and I have seen several. I'm actually not sure why we don't have more of his work. Cool Hand Luke is one of my all time favorites. I also love The Verdict and have a soft spot in my heart for Hud, as it was recommended to me soon after it was originally released by a then best friend of mine. I never understood why she recommended it, as she also recommended Shane and the two are quite different.
    So, anyway, it looks like it's going to be a laid back though we don't always have laid back weekends here!
Pneumonia X 2
    I'm going to assume you haven't been keeping up with the Life After Death and Dailies journals. Even if you have, you'd be only obliquely aware of what's been going on over the last few days, as I haven't been posting; I've been too busy caring for my mother. I up-to-dated both journals up this morning, but only bits of pieces of the story of our last few days exists in them, so I'll weave together those threads with others here:    This was my first experience at deciding whether to medically treat acute symptoms since we've been on Hospice. I am full of gratitude to our Hospice company for the patience and compassion Mom and I were shown as I worked things through out loud in order to arrive at a decision. My fears of hospitalization have finally been allayed. I was assured by three separate nurses, during this episode, that all efforts are always made to avoid hospitalization when this is the desire of the client. I was astonished that even the minutest of my concerns and questions, such as whether the On Call Hospice RN had, in her experience, encountered people who died without ever having reached resignation, found detailed, concerned response. Once I decided to treat and settled on a course of treatment action was immediate. Finally, I was never "warned" about anything, merely informed of what could be taking place and what I might experience with my mother from this point on.
    Interestingly, although I didn't even think to consider pneumonia until the tongue thickening happened, once that possibility appeared, I didn't freak, nor did I buckle, at all, at the possibility that this is most likely going to be typical of my mother's trajectory and that more "To Treat or Not To Treat" decisions will probably be littering our path with increased frequency. As well, I am pleased that, during the worst of her weakness, I quickly figured out a way to use my body to support my mother's weight during transfers when it was obvious that she couldn't, and managed this without doing it in such a way as to compromise my back. On Wednesday, while chatting with the Hospice Social Worker after his visit with my mother, I reported to him that my next "fear on the horizon" was the time when my mother wouldn't be able to help in transfer and would become bedridden. He assured me that as long as my mother could sit up, there would always be some sort of "trick" to help her move from spot to spot, even if she became to weak to help in her own transfers. That, he said, is what the OT people are for. Then, less than 12 hours later, I found myself in this position and discovered a trick for myself, on the fly. This gives me great confidence; not that it will be easy, but that, no matter what happens, one way or another I will be up to it.
    Oh, wanted to mention, off topic, just so it's here, my mother did develop a knot on her back where her tailbone used to be (she broke it and it was removed when she was in the Navy) from the "cleaning drawers" collapse on Thursday. It doesn't hurt her, though, even when I press on it, and doesn't seem to keep her from sitting comfortably or, as we discovered yesterday, from moving, when she's of-a-body to move. Her left arm continues to improve. Although, when concentrating at my direction, she still doesn't seem to be able to raise it enough to use her slip-on blouses, I noticed, last night, when she was in the bathroom before retiring, she was raising her left arm so that her bicep was at a 90 degree angle in order to preen her hair (which needs washing).
    I also want to mention, so that I remember, when she was "fever sweating" over the last few days I detected a sharp sweat odor after each episode. Her sweat (little that there is) usually doesn't have a noticeable odor. I've never noticed this one, although it's been a looooong time since she's had fever sweating episodes here at home. The last ones were at the hospital and the rehab facility, respectively. During these times there were so many other competing odors that I never noticed this one. This morning I took extra whiffs when I was close enough to her to do so without being detected. Nothing, other than the usual odor of underwear that needs to be changed. Her forehead felt, as she often says, "cool as a cucumber". I can hear through the monitor that she has been settled down for awhile, now. Depending on how she appears when I enter her bedroom to awaken her at 1300, I may let her sleep until 1330 or 1400. I know the extra sleep, especially if she is in peaceful repose, would probably be good for her.
    So, on we go, hopping down The Tumor Trail. It doesn't seem as though she's "dying". It just seems as though she's living, more slowly, with a bit more difficulty, but continuing to live, nonetheless. You'd think, by now, I'd have developed some sort of idea how her life will end...but I haven't a clue, and, frankly, I'm glad I don't. Mom & I both like surprises.
Thursday, September 25, 2008
Today I eased into a nap to the sound of my mother breathing.
    We received the "nursery" monitor, to which, I think, from this point on, I'll refer as the "nursing monitor", as my mother's bedroom is certainly far from a "nursery". Before we received it I worried, a little, about what it would be like to listen to my mother breathing. I was sure I'd hear it, since she breathes so loud and so quickly. I was concerned that it would create a less than restful sleep environment for me. I was exhausted, today, though, after the tight and demanding schedules of the last few days, and knew I'd need a nap. I was surprised to discover that although my mother's breathing is heavy, normally, and loud enough so that I can hear each breath through the monitor, it's also regular, rather than ragged or forced and, surprisingly, soothing. I was so delighted to discover that it is not at all disturbing to listen to her breathe that, just as I dozed off, I found myself thinking about how one of the methods of learning to meditate is to concentrate on one's own, I wondered, what class of meditation is involved in concentrating on someone else's breath?
    I also recalled, while settling down, using a technique I'd learned from drummer Mickey Hart on a PBS interview involving synchronizing one's heartbeat with that of someone who needs to be calmed, then soothing their heartbeat by consciously slowing your own down. This worked, once, when I tried it; it involved laying down with the person with my chest up against the person's back. I wondered if I could do something similar with my mother's breathing.
    Anyway, it's fascinating to listen to my mother on this transmitter. Tonight I listened to the sounds of her settling down into sleep. I noticed that she quietly clears her throat several times, then, suddenly, the clearing stops. I assume that this signals that she's "under".
    Speaking of breathing, the Hospice Nurse today recommended two things:    She also brought a "chair scale" on which to weigh my mother, as I am not the only one who was questioning her loss of 20 pounds since having been released from the facility. Turns out, today, she weighed in at 147, rather than the 140 she registered on the standing scale. This seems more likely. I'm sure she's lost weight, but I was also fairly sure she hadn't lost 20 pounds. The nurse also noted that at least a few pounds of that was probably water weight from the edema she's experiencing at the moment, but that she strongly doubted that 7 lbs of it was water weight.
    Abrupt end, tonight. I'm pretty wasted, even with the nap. And, I should get up early tomorrow, in case the Construction Guy calls to let me know he can install the cross grab bar tomorrow instead of Friday. When he left this morning he still wasn't sure if the bar which is being specially made, would be ready.
    Oh, I should mention, the non-emergent paramedics were called, again, this morning. You can read about it here.
Tuesday, September 23, 2008
Today we are having safety bars installed... the bathroom and through the hall. All, I think, but one will be installed today before my mother arises. We've postponed the nurses visit so that we can get these in. I know, I know, this is something we should have done some time ago. The absolute necessity of the bars happened yesterday, when my mother's incredible grip and arm strength pulled the towel rack, which we've been using for ages successfully, from its sockets, yesterday. She wasn't hurt. Nor was I (I was holding onto her, at the time). Here is a rundown of the incident.
    In case you've not ever run across this necessity but expect it to appear in your future, you might be interested to know that "handicapped" grab bars are, astonishingly, not manufactured to fit from stud to stud, in most cases. This is the primary reason why bars are often installed on the diagonal. I discussed this with the Construction Man we've hired to put in the bars. He was the one who brought it up, when I mentioned my concern that my mother has, in the past, not been handy with diagonal bars and, at this point I am more than reluctant to expect her to adjust to something which has always felt unnatural to her. We are solving the problem, in part, by installing two bars here and there where, if handicapped bars were made for normal houses, one would do. In once case, we are having the Construction Company make a bar to fit.
    So, my mother will no doubt be delighted to know, I am going to let her sleep in until the bathroom bars are installed. This probably won't be much past her 12-hour-sleep-mark, but she always appreciates extra sleep, no matter how little or how much.
    I'm relieved to be having this done. Although I trusted the current arrangement enough to rarely think about it, I also always autonomically braced myself for a possible malfunction in the bathroom. Luckily, our bathroom is so small and close and I am always so THERE with my mother (in the bathroom or out) that the malfunction that finally occurred didn't throw us. But, you know, it's time, finally, to do something about this. Last night wasn't really much of a problem without the usual support, but I'm looking forward to being able to relax a bit more and use my body a bit less in the bathroom with my mother, now.

    An interesting "sidebar" (excuse the pun, which is intended: The Construction Man (who is one of two owners of the company) told me that he and his brother (the other owner) briefly considered devising, manufacturing and selling support bars to fit existing studs (which are pretty uniform throughout building construction, even going decades back). Upon researching the possibility they discovered why no one else has leapt to fill this obvious need: Aside from the patenting process, with which they were prepared to deal, a variety of other government agencies are required to be involved for "safety" and "certification" purposes. In fact, one of the bars, the one that the company will be making for us, will neither be certified nor is it regulated, but it is exactly what we need.
    As well, our Construction Man told us that the companies who manufacture and distribute these bars will tell you flat out that installing them during the construction of a building is the preferred method because of their "off-stud" size.
    "But," I said, "I would guess that this hardly ever happens! How many people build custom homes when they are at the age where they anticipate needing support in their elderly years?!?"
    "Exactly," he confirmed. "Although we build homes, too, and have built a few with stuff like this installed, almost all our grab bar business in in existing homes." He also told me that, although there is a "trend" toward building homes that already have supports like this installed, it is not a healthy trend and these houses don't sell as well or as quickly as homes without pre-installed support devices. "I think," he added, "most people, when they're buying a home, aren't interested in thinking about what they're going to need when they are old enough to need support to get around. It's probably a turn-off. I built the home for my family and I didn't think about this, at all."
    Although "The Media" is trying hard to turn the public's head about this dilemma in regard to buying houses already fitted for future support needs, truth is, you can't fight human nature. What I find curious to contemplate is that the support device industry, at least in this country, completely ignored the basics of building construction when designing support bars in the first place. I mean, it certainly wasn't a was simply a lack of foresight and competent construction thought.
Monday, September 22, 2008
I haven't been absent...
...really, I've been here but buried in the other sections of these journals, now known as the "Archives". I've been correcting links, going forward archive by archive, and reattaching search engines to everything as I go. I've just started on the fourth archive, the one for 2006. It's going quickly, since I'm not reading posts, just scanning for links, checking them, correcting them, if necessary, and going on. I'm even checking and correcting external links and adding links to articles I cite from the New York Times, since they have opened their archives to the "unregistered" public within the last year. It's surprising how many websites either rearrange their pages, move or extinguish over time.
    A fair amount of what has been going on in our home is showing up over at The Dailies or at Life After Death Sentencing. If you haven't been over at either, Mom is recovering slowly but surely. She's having a few problems with feet swelling (minor), which, I think, is due to the fact that it's been difficult for us to figure out a strategy for getting her up to pull her slacks down, but I think we may have overcome that tonight. Since she was having trouble raising herself from her rocker for a moment for me to pull down her slacks, we tried having her rise with my help then attaching her to the walker, but she's got the heebie jeebies about the walker, right now (I don't blame her; she fell while she was using the walker), so, as soon as her hands were on the grips she'd fall back into the chair, giving me no time to grab her slacks and pull. We tried having her hold onto my shoulders, too, while I pulled her pants down, but I almost fell over backward from the weight of her leaning on me, so we decided that wasn't a good idea. We tried standing her with my usual assist and transferring her hands to the arms of the wheelchair but even with the wheels locked it isn't sturdy enough to stay in place while she leans over it...and, again she collapsed back into the chair before I reached the back waistband of her slacks. I'm having her attempt to raise her arm straight out in front of her at odd times during the day. I also take hold of it, have her relax, and stretch it out and move it up. The results are better when I'm doing it, but she is recovering some movement on her own. I am now convinced that she didn't fracture anything...just received a very bad muscle whack. Her shoulder isn't a problem at all, anymore, just the back of her bicep and sometimes her forearm, which occasionally aches from the additional load it's taking on when she rises or walks. She's on pretty constant acetaminophen, 500 mg at a time, four times a day. She decided to refuse it, tonight, but after the transfer from the rocker to the wheelchair in the living room as we were heading in for night prep, she commented that her legs were aching from "all the exercise" she'd gotten today. When I asked her, again, about "taking a Tylenol", she assented.
    She is still completely enwrapped in Touched by an Angel episodes. I'm not sure what we're going to do when we get through the four seasons that are available. I'm hoping, if she's still heavily into them, that she'll have viewed so many that repeats will work. Otherwise, maybe I can get us back to reading, again. I've tried over the last week and Angel episodes are continuing to trump books.
    I'm seriously backed up on stuff I am planning to post; a couple of book reviews, another essay, etc. But, I suppose, it's probably better to be behind than to have nothing left to do!
    Maybe I'll do a little more link checking before turning in. I'm figuring that I should be able to migrate this journal over to the domain in a week or less. I'm not going to wait to check links in The Dailies until after everything is securely domained. Between the archive and the current area on that section there are 1500 posts and counting. The minor sections, like the food section and the moving archive, will have to wait, too. So will the movies section. I'm figuring I should be able to migrate this journal and reattach the search engine in about a week...then I can breathe a little more slowly and take the rest of the link checking as it comes.

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