The first I've heard about NPH...
...at least the first I'd registered, was a startling commercial, did you catch it, which I saw for the first time a few nights ago: An older man, in 30 seconds, takes us from being senile and infirm to being vital, vigorous and aware. Nothing, of course, is explained about NPH, the acronym is just mentioned.
    Last night I searched it. Several references came up but I chose only one; I wanted fast information: All About NPH. From what I read, the NPH profile sounds very like my mother; but, my mother easily fits more than one dementia profile. Oddly, the one she doesn't fit is the Alzheimer's profile. I also noticed, in scanning the other references in my search, that the word "diabetes", even the phrase "elderly diabetes" came up a lot in the literature, although I didn't go into any another links last night.
    I excitedly read about the shunt procedure. Then I read the section about diagnostics. The two most critical tests, cranial CT and MRI, were performed on my mother in September of last year when she was hospitalized after her blood pressure crash. I noticed that the material I was reading was copyrighted 2001-2003. The results of both of these tests clearly showed my mother had suffered a small stroke to the back left lower section of her brain some time in the distant past and showed "nothing else", including that her crash had been another stroke. You'd think that if NPH were evident it would have been mentioned. I will ask her doctor about this next week during our appointment.
    From the little I've read, though, it looks as though my mother may not be an NPH sufferer because her dementia appears to be related to a variety of other factors and loosens its grip as these factors are addressed.
    The procedure sounds more than fairly risky with a variety of high risk complications after the shunt is installed, most of which appear long after the procedure. Behavior may revert as the shunt needs to be adjusted. As I read through the material I got the image of an extremely risky and pricey operation that probably is never done on an other than voluntary basis, which is, thus, likely, not covered, or not well covered, by insurance.
    I wondered why I'd never seen the commercial before or heard about the condition in all my readings about dementia; I've probably run across it, but it hasn't been highlighted. It's been noted and addressed for awhile, it seems. Maybe, I mused, since this material was first published, some of the riskiness of the operation has been addressed, some of the trickiness to controlling dementia through shunt adjustment has been alleviated, so the medical establishment is now promoting the procedure.
    I'm thinking, from what I've read, that my mother is not a candidate, which saddens me. I cannot get the panoramic image of Frail Man to Robust Man out of my head. I would love this for my mother. I'm sure the advertising agency had this in mind when they crafted the ad. It addresses everyone's hope against hope, those of the charge as well as the caretaker.
    A funny Thank You Thing: There's been minor tension here the last few days. I think my mother's been feeling especially dependent and not liking it so she's been gently but firmly putting up boundaries. I've, of course, been stepping back, as much as I can without endangering her. It's part of the dynamic of our relationship, the part where she creates distance between us, which, curiously, is the most hopeful part of our dance.
    One of her methods of expressing distance is upping her use of the phrase, "Thank you". When she is irritated and marking off her psychic and/or physical territory, when I do or say something that she considers an invasion, usually a direction I need her to follow that we both know she doesn't want to follow, she'll say "Thank you". Most people would, under these circumstances, say it icily, but not my mother. She says it as though she's enlarged the letters a bit, but when she says it, it's not a pose. I realized, yesterday, her saying it is actually like a mantra that helps create within her the grace to be grateful for being able to define herself in opposition to others, and that there is someone in her life with whom she can do this, safely, on a daily basis.
    Whenever she slips into this "Thank you" mode, I am always, well, not exactly chastened, but I become instantly thoughtful about my own perceptions of periods of trial with her. During these times I redefine what the word "trial" means, and find my scale of grateful acceptance rising to task of being my mother's final companion.
    Thank you. That's all I have to say. Just, thank you.
- posted by gail rae @ 11:20  0 comments   email...this post

 
...a jumble of thoughts. My mind is...
    The holiday began with no plans. July 4th is not a Practically Guaranteed Family Celebration Holiday in our extended family. More often than not contingents are traveling or camping. Yesterday afternoon Mom and I were thinking it would be a relatively quiet day, "relative" being the operative word since, from my point of view, being on the periphery of all of my mother's days is a quieting affair.
    Nonetheless, MTNDN, whom I adore without knowing much about her (sometimes, you know, people just click) celebrated Thanksg...[I've been doing this for a couple of days, now, referring to The Impending Today as "Thanksgiving"...I don't know why, but I ran into someone else last night who's been doing the same thing.] the Fourth of July with her burgeoning extended family in Payson last weekend so is at loose ends this weekend. I dreamed up an interesting July 4th dinner for Mom and me yesterday featuring chicken breasts baked in a crust of spiced, left over crumbs and such and a blueberry cobbler with the last two cartons of the flat of Every One Of 'Em Perfect blueberries...and some kind of pucker-tart slaw. I ran into MTNDN this morning during Late-Morning Paper Retrieval. She was at loose ends and not interested in cooking so she's coming by later for dinner and a movie. My mother is so thrilled she's getting in an extra nap this morning. She tried to sneak it without oxygen, but failed.
    I have much to do. I tested out my auto-pull-arrange-place-publish data system last night with my ISP's proprietary web page design software. It seems to have done a great job. I noticed that History: 2001 was halfway uploaded last night when I checked on it, quickly worked up an Update page, turned the computer off and went to bed. This morning, I notice, the detail looks good, I only had to make a few minor adjustments to the pages. So, I'm here to set this off and running, today, and then run on, myself.
    Hmmmm. Holiday. Happy. Sounds like a good and tolerable combination for a salutation.
- posted by gail rae @ 10:37  0 comments   email...this post

 
Eat. Drink. Old. Woman.
    That's what it's been like, today. Over the last month or so I've been priming her, nutritionally, for her blood draw this morning. She almost sabotaged me yesterday with one of her days of extreme lethargy although she wasn't terribly pale. I had to tempt her to eat with things like nachos and a homemade lemon-ginger-blueberry sauce that is just this side of jam thick. And popcorn. We go through a lot of popcorn in this household. So much that I think the high temperatures it creates in the microwave may be slowly killing our 1985 model. Yesterday, popping popcorn blew a kitchen circuit.
    I needed to make sure her hydration level stayed fairly decent, since I expected them to take three vials of blood, as usual (they took only one). I tempted her with a root beer, something she hasn't had in months, maybe even a year or more. Luckily, her blood glucose medication can handle it.
    I had to keep her awake yesterday long enough to aid digestion so that the sleeping in which I knew I'd be unable to prevent her indulging would not back up her system.
    What with today being hair day, though, and including an appearance before the world at the lab, and getting a fast food hamburger afterwards in order to lure her to eat, she looked good, felt good, moved a little slow but denied any hip or thigh pain, talked back to the television during Charlie Rose and Dr. Phil, and is now observing Sacred Nap Time with her acolytes, our cats.
    I let her lay down without oxygen, since I know she'll be up shortly and she relaxes better without the cannula. It was her dismal expression that did it, when I arose and headed in the direction of the compressor.
    "Can't I just lay down for a little bit without that thing in my nose?"
    Yes, you can.
- posted by gail rae @ 16:33  0 comments   email...this post

 
"Put that in your journal about me," she says.
    So, that's what I'm doing.
    I'm trying to hydrate the woman. If you're a regular reader, you know keeping her hydrated is a struggle. She simply doesn't often register thirst and when she does, wetting the inside of her mouth feels the same to her as replenishing her system.
    We're having blood drawn, today, probably two vials, possibly three. Yes, Mom, drink that extra glass of water before we go. You'll need it in an hour or so.
    She thinks it's funny (curious and ha-ha funny) that I am maintaining a journal about her, my caregiving experience with her and my 'thrival index' as she and I continue. But, at least once a day when I'm on the computer she asks me, "What did you write, today? What part of our history did you add?" I tell her.
    It's not like she doesn't already know everything that goes on, here, including the internal stuff, both hers and mine.
    I'll probably pop back in later. Looks like I'll have some time, today, to work on this.
    "Drink water."
    "Yes m'am."
    "Now. Pick the glass up and drink some now."
    "Yes m'am."
- posted by gail rae @ 11:22  0 comments   email...this post

 
I force myself...
...sometimes, to come here and post. I do this on purpose. If I rely on "inspiration", I notice, my posting is heavily impressionistic. If I come here with a sense of duty, my posting leans toward the informational. This morning, I am here with a sense of duty, as I'd much rather be doing some of the "dirty" work of site maintenance, playing with code, etc. I've decided to download the pages I've created through this proprietary software onto my computer and see if I can break through some of their HTML in order to utilize space more efficiently on the pages I produce through it.
    One of the more important people in my mother's life is her oxygen and breathing medications guy (not his official title, which probably includes the words "technical" and "therapist"). Although we haven't been seeing him often, most of the parts of her equipment need to be maintenanced and/or replaced on a regular basis. The more she uses the oxygen and her medications, the more we see him, so our visiting quotient is on the upswing. I mention him because he called today and, in talking with him I was reminded of a few oxygen related "things" I wanted to post.
    Increased alertness and energy is the destination of oxygen and pleural medication therapy. As these are approached, the game changes. Because of the volatility of oxygen, in dealing with an unrepetant smoker, knowing about these changes ahead of time might help avoid a problem. The following is an anecdotal example of what I mean:
    This morning, again, I arose to find that my mother had awakened sometime in the night, removed her cannula, draped it over her rocking chair and apparently sat up for long enough to drink 8 ounces of water and 4 ounces of coffee she'd left on her TV table last night. It was also apparent that she looked for her cigarettes, although this time she didn't find them, as, last night, I hid them close to where I sleep. I finally remembered that the night before (I believe that's when it was) when she took her cannula off and found the cigarettes I had hidden in the regular place. But, she's too alert, now, for me to do that, thanks to oxygen therapy.
    There was one difference, this time, about her night respite (so to speak; a respite from sleep, which for her, is, in a way, a vacation). I had mentioned, night before last, that it would be nice if, when she removes the cannula in the middle of the night, she turn off the machine because of the electricity it consumes. Last night she remembered to turn it off. On the one hand, her increased alertness thrills me. On the other hand, this means she is becoming alert enough to remember what I say about mundane concerns. She may, at some point, decide that she is alert enough to be allowed to smoke cigarettes "responsibly" in the middle of the night. This highlights a problem with oxygen therapy that seems to be true of all therapies. When a person needs oxygen therapy the most they are unlikely to sabotage it because they have so little energy and are not very alert. As alertness and energy increase there is a tendency to think that it is okay to continue with behaviors that put the cannula in one's nose in the first place. When one is not very alert or energetic one ignores, or perhaps doesn't even feel, the physical lure of nicotine addiction. When one is alert and energetic one also becomes alert, as well, to the symptoms of withdrawal from cigarettes; and, subsequently, becomes alert enough to manage smoking and oxygen at the same time. Granted, this significantly reduces cigarettes smoking, but it also practically guarantees that the oxygen client who is a smoker is going to continue smoking, even if in reduced amounts.
    I am hoping that a similar process as took place with Chocolate/Sugar Reduction in our household will take place with smoking (although I'm realistic enough to know that Chocolate/Sugar 'addiction' is quite a bit less volatile than addiction to nicotene). As my mother quietly considered the ramifications of continuing to consume at least a pound of chocolate a day and untold amounts of sugar she began to naturally cut down, until, today, we are at the point where she often refuses offered sweets and it is hard to find any sweet substances in our house. More often than not, when I need sugar in a recipe, I have to make a special trip to purchase a 1 pound box; which inevitably gets passed on to someone else in the family who has an ingredient crisis while cooking [Has anyone ever researched why sugar is such a ubiquitous crisis ingredient that borrowing a cup of sugar has become socially iconic?].
    Whether or not I'll be able to depend on this subtle habit-change-from-the-root in regards to my mother's smoking is another matter. Obviously, this particular renewal of my mother's reality-centered mind is going to require some increased creativity on my part. I'm looking forward to it because it also means I can deal with my mother rationally, talk to her about all aspects of her care, and rely on her judgment in regard to her treatment and her habits. We are always much more productive [Is this the right word? No, but I'm in a hurry and am not going to search for the right one.] when she is an active member of our partnership.
    So, the moral to, or, better yet, the direction attached to this posting is: Celebrate the changes in your charge when oxygen therapy kicks in by looking forward to your charge's renewed involvement in her/his life. Yes, remain careful and vigilant, but allow yourself to be pleasantly surprised by working your charge's involvement in their own life into your routine.
- posted by gail rae @ 10:53  0 comments   email...this post

 
I smile every time I imply...
...in this journal that I am talking to someone, an audience of more than two or three including people who know me. But, not only when I journalize (forgive me for hating the word "blog" and refusing to use it, but, I do and I am) here, I write to an imaginary audience, one that is indistinct because, truthfully, I can't imagine caregivers having the time to read someone else's journal. I don't. I'm surprised I am finding time to write this one...it is strictly my shamed capitulation to the use of automated software on someone else's servers that is allowing me to do this. Well, and that I type fast. And that I know, reasonably well, what I'm doing around computer software. And my fingers are exquisitely suited to writing, quickly, whatever I'm thinking, and I form thought into language, quickly...well, the point of this post is, since it looks as though I'm going to have a go of this, I will be setting up an Updates page, a 3 column thing with little blurbs about, well, what I'm updating. What I'm adding. Or, subtracting, if need be.
    So I'll remember it, I think I'll mention that I also plan to direct a set of instructions for visitors on sorts of things for which they might want to search my site. There is, already, at this early date, a wealth of usable information and ponderable ideas and considerations in here about topics that can be brought up with simple searches for the obvious. A search for "dementia", for instance, well, I've written a lot of detailed observation and confessed many of my reactions to my mother's slide rule dementia, although on that topic I may not have much hard information, like resources, etc. But, I can't imagine you visiting this sight without having an interest in some of these things. So do I, which is why I put up this site.
    So, for anyone out there who's reading, look for minor, continuing changes in both structure and content, as I continue. I'll figure out several ways to keep you posted of novelties.
- posted by gail rae @ 23:27  0 comments   email...this post

 
I almost thought I wasn't going to make it, today.
    It's been busy; refreshingly so, although part of it involved a substantial bill for more a/c work. Some of it, though, I was able to knock off by doing some of the work, myself. The fan and fan housing for the blower needed cleaning. If it had been cleaned in the 22 year life of the unit, I'd be surprised. The company was going to charge extra to clean it and there were other things the serviceman needed to do to the unit so I offered to hose and brush it down. My mother really perked up at that. Do-it-yourself-if-you-can is definitely her style and, even though most of those things she can't do herself, anymore, she loves to be around people who can. I believe her witnessing of this event granted her a few more hours of being awake, today. Her spirit seems revived by having to confront money matters again, since they were taking place in front of her, which rarely happens, anymore. It is a pleasure to see her working out the detail of invoices and charges, questioning this and that, even though I know she won't remember anything she's doing; may not, at the end of this week, remember that our a/c was worked on again within the space of a little over a couple of weeks.
    I've had it in my mind, in the last 36 hours, to muse about a few things, but they all seem to have gotten shot down by reality. I noticed, for instance, a few nights ago, that I could practically hide my mother's cigarettes under her nose at night and it wouldn't matter, she wouldn't find them and accidentally combust herself in her veil of oxygen in the middle of the night. Well, yesterday morning I awoke to discover her cannula smartly draped over the back of a dining room chair and evidence that she'd indulged in a cigarette break during the night. At least she took the oxygen off, although waiting 20 minutes for the oxygen veil to dissipate is the best strategy, and I know she didn't practice that one. But, to me, the point was, the night after I'd decided hiding her cigarettes was fairly easy, especially since she often forgets, early in a search, what she's looking for, she found them.
    I thought I wouldn't be mentioning noticing her swelling, again, for another week or so, since that has been the schedule she's been keeping in the last month. But I'm mentioning it, less than 72 hours after giving her 10 mg of furosemide. If the foot rub doesn't work tonight I may be giving her another 10 mgs in the morning.
    Seems I thought a lot of things wrong in the last few days. My mother never said there'd be days like this, but someone's mother did.
    I have been, well, wandering mentally, lately, around the condition of dementia. I wonder, in regard to the extremely nebulous condition of what I recently heard described on a prime time family drama as "old-age dementia, not Alzheimer's", how much the urge to relax into dementia, versus the urge to fight it, plays in the quality and amount of dementia experienced by The Ancients. My mother is still capable of sounding completely competent to conduct business on her own behalf over the phone, and not just because she's good with the yeses and the noes. She listens, she asks questions, she repeats pieces of information, she sounds like she's writing things down, it is amazing to behold. Then, with equal dispatch, immediately after taking a phone call, she can sink into a demented reverie that has been known to drive relatives wild. The key word, though, is "sink". She relaxes into it, as though relaxing into a bath. I sometimes wonder how her dementia keeps her occupied. I think of it as a kaleidoscope of her memories playing for her on her main screen, and a few others, as well, now. She used to say she was afraid of dementia, although, now that I think of it, she never really said she was afraid of losing what she thinks of as her mind; she has, however, indicated that she is afraid of losing herself. Losing oneself, I'm beginning to learn, is a different type of dementia than what my mother experiences. I don't think dementia necessarily means a loss of self, although it can, if it is a dementia peculiar to self-concept. Alzheimer's is one of those dementias, I understand.
    When I imagine my mother's dementia, though, I think of something I read nine months ago about the Hindu concept of the ages of a human being. The Age of (the) Old, is described very directly as an age in which one feels the need to release bonds and to ponder one's existence by, well, wandering, studying, etc. The description, although I can't remember it verbatim, mentions that this is also a time when one either should have provided for their livelihood ahead of time or it should be provided by relatives and the community. Whether or not this happens in actuality isn't my concern. Rather, I think of this as a description of what my mother is doing with her intellect, maybe her emotions, perhaps even her soul; loosening her bonds, not to earth, so much, but to earthly concerns, in order to see what perspective they offer when they are not driven by survival/nurturing.
    Sometimes, I think about this...
- posted by gail rae @ 23:08  0 comments   email...this post

 
Earlier today I gave my mother...
...10 mg furosemide. Her feet aren't swelling but there was something about the way her slacks fit her around her belly this morning...it just seemed like she might be retaining water in her torso without it yet affecting her feet or face. I figured, 10 mg wouldn't hurt, especially during the day. I'll just make sure she stays hydrated and changes her paper underwear often.
    She's been reasonably lively and active. It's a "hair day", and I expected that she might want to go out to lunch. She didn't, but she didn't nap until about 45 minutes ago, in the livingroom, in the sun, her cat self napping, and now she's up, mentioning that she's glad she didn't sleep through Oprah.
    I'll be uploading (slowly, probably, well, I'm not sure...I've set up a data sort and transfer method to deal with all the material and 2000 was sorted out and uploaded pretty quickly) 2001 soon. I'd say there is about three times as much material for that year as there was for 2000. I wrote more people more often. Most of the entries are from emails, although some are from letters and some from notes that later became emails.
    Oh! This is interesting! I've been obliquely watching Oprah. It was a segment centered around a woman who wrote Oprah that her husband had lost his romanticism after 10 years of marriage. I wasn't paying attention and would have completely trashed anything I'd heard except that, when the segment was over, ending with the husband successfully recapturing the romance in the couple's marriage, my mother rose from her chair, turned to me at the computer with visible tears in her eyes (a shock in itself) and said, referring to the show (I quickly realized), "Well, that's nice, but it would have been even nicer if Dad had done some of those things for me."
    I was surprised. I guess Dad didn't do much in that area, although he was incredibly sentimental, the most sentimental of the two and perhaps the most sentimental in the family. He loved celebrations, tried and true or impromptu, was into affectionate nicknames and hauling out family stories at the most inappropriate times then misting up over them, but wasn't ever the producer of calendar events, although he was a willing participant in creation.
    The tears didn't last more than a minute. She was wiping them away as she talked to me. I don't think I was meant to notice them. "I guess Dad wasn't very good at that, was he," I said.
    "Most men aren't," she said, shaking her head and returning to her rocking chair. "I know MPBIL isn't. I'll bet MCS's husband and MFS's husbands aren't, either."
    Wow. I didn't realize how important romantic expression is to my mother and how awkward my father was with it, even though he fairly boiled with passion about practically everything including my mother.
    I've always been lucky, in a way; most of my lovers have been far more sentimental than me. I tend to be more verbal, especially written, with my romantic expression, but it rarely follows a calendar. I never realized that my mother is a calendar person when it comes to romantic expression. Too bad none of us ever picked up on that and clued Dad into what we were doing and that it might be nice, on occasion, if he'd done it all, himself, just for his wife. He did take her out fairly often but, I don't know, I guess he was missing something. Maybe it was the element of surprise. I recall him discussing with her all his anniversary presents to her pre-gifting and ad infinitum. Maybe that had something to do with my mother's dissatisfaction with his romantic technique.
    Interesting.
- posted by gail rae @ 14:32  0 comments   email...this post

 
I couldn't sleep...
...so I did some polishing and a little updating on this site. I'm in the process of targeting the individual segment titles on the yearly History 'home' pages directly to the segments, as well as to the pages where a number of segments are published. I also did intra-page targeting on Mom's Medications page, and I'm prepared to begin uploading History for 2001.
    In the meantime I spent a lot of time with my mother being up today. It was such a pleasure. We went out to eat this evening to a new restaurant. Background noise and visual confusion take a quick toll on her, these days. When we arrived the restaurant was close to empty, quiet, the interior looked interesting and the wait staff was solicitous. Mom liked the restaurant, liked the view, the menu selections, and suggested that we put it on our list of places to eat. We had arrived, though, just ahead of the dinner crowd. As the interior filled, conversations bounced off the walls and ceiling and lots of people began moving among the tables. She quickly became distracted and irritated. Suddenly she couldn't remember where we were, what she'd ordered, why she'd ordered it...now, mind you, this isn't unusual. Tonight, though, she seemed particularly acute mentally, especially since she'd just come off oxygen about an hour previous to visiting the restaurant. But, even in a peak environment, she still falls victim to the other curses of old age: unreliable hearing, eye-sight that isn't as quick or as correctable, if you're reading this, you probably know that drill. This time, though, she was aware of the quick erosion from alertness to fogginess and she wasn't pleased about it.
    So, I realized, even when she's doing well, she still exhibits The Ancient's sensitivity to aural and visual confusion (I'm thinking of it as analogous to The Princess and the Pea), and can be thrown off a promising mental course by environmental distraction.
    Dementia is such a tricky business. It's too complicated a matter to call it all "Alzheimer's", load every case of dementia into a nursing home and allow it to deteriorate without observation and experimentation with behavior and environment (including the environment of one's body).
- posted by gail rae @ 00:53  0 comments   email...this post

 
Today's character still eludes me.
    Usually I have it figured out by now (even though any particular day may, later, prove me wrong). My mother has been up twice, since before 0700 for 45 minute intervals, insisting on smoking (and enduring the waiting period while she comes off the oxygen) but trotting off to bed when I begin to prepare breakfast. I think both arisings were spurred by her subspace noting, in her sleep, of the car engine, as both intervals occurred about 10 minutes after I arrived home from car-borne errands.
    She looks good, sounds good, but isn't ready to face the world, yet, I guess. She confirmed that it is Sunday, a funny thing, actually. She always asks, of every day, "Is it Sunday?" or she'll state it. I used to think she did this because every day seemed like a pastoral Sunday (which I wasn't sure was good), but, because her reactions vary depending on what day of the week it is (i.e., if it's Monday or Friday she's enlivened, as these are both hair days; if it's a doctor's appointment or a blood draw day she wishes it was Sunday), I decided it may be that, to my mother, now, every day begins with the potential of being a Sunday, but she's not disappointed if it's not.
    Well, today, it is Sunday and she seemed quite pleased, as though she had partied all night and felt no guilt about sleeping in.
    I will be going out a few times, today, a supply run and a short friend run. I'll wait until after her breakfast, which will probably take place in an hour or so, to remind her of my plans. Her complexion was rosy. She may want to accompany me on one or the other trip...I can hear a resounding "Naaaahhhh..." from the peanut gallery. You never know...it's days like this that are the most promising...
    For myself, I'm not computer inclined, today, but I wanted to check in. I have some thoughts about my mother's sleeping environment I want to muse about on the keyboard, but, later, I think...we've still got a few of MCF's movies, and I was much encouraged, last night, that she was fascinated with X-Men. There are two more action/adventures, one psuedo-science fiction, and I've got a few books that look good. Sure sounds like a Sunday to me. Good thing it is a Sunday.
- posted by gail rae @ 10:29  0 comments   email...this post