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.
We broke open the Cold Pack last night...
...although we, gratefully, didn't have to use it. Last night my mother experienced an episode of sudden, extreme, unusual pain which started at about 2215. It was immediately obvious to me from her movements in the rocking chair and the expression on her face that something was horribly wrong. She had jerked herself into a leaning position on the bedside table in front of her and she was wild eyed. In an instant her breathing had gone from easy and quiet to labored and loud. I did not have to ask her what was happening. She fairly shouted, "My back! It hurts!"
In less than two minutes I had determined that the pain was across her lower back, it had begun suddenly, although she'd been mentioning, throughout the evening, a minor lower backache, her "usual" (I asked her this earlier), but she'd refused a regular strength acetaminophen with dinner. Sometimes she'll take acetaminophen, sometimes not. Sometimes I can tell, even in the face of her refusal, that her "minor lower backache" is a higher degree of minor than normal and will not ask if she wants acetaminophen, I'll insist. I did not believe this condition existed last night. Once the surprising, hard pain struck, in the above mentioned span of time I gave Mom an extra strength dose (500 mg) of acetaminophen and called Hospice. The on call RN (one with whom I'm very familiar and with whom I enjoy working; I discovered last night that she is always on call at night, Monday - Friday, which pleases me) returned my call at 2229. Within that 14 minutes it occurred to me to have Mom attempt to rise from her chair with assist to see if she retained the use of her legs and/or if this kind of movement affected the pain. She rose, and sat, without difficulty. The attempt had no effect on her pain...it neither lessened it nor increased it.
As the phone call began, Mom reported that the pain remained, steady and harsh. The acetaminophen either wasn't working or hadn't kicked in. The RN could hear my mother's distress over the phone while talking to me. She quickly had me assess the exact location of the pain: lower mid back, just below her rib cage, about waist level, extending from about 5 inches on either side of Mom's spine across the spinal column. "We can say it's in the lumbar region," said the nurse. She had me ask Mom specific questions about the nature of the pain. The only one I remember was whether it felt like something was tightening and loosening, in order to determine if it was a muscle cramp or spasm. Mom's answer was, no, it was steady and of the same intensity throughout. Time to break out the Cold Pack and access the Morphine Sulfate Oral Solution (Raspberry Flavor: Funny what you notice in an emergency...my immediate instinctual thought was thank the gods it isn't cherry flavored. Mom hates cherry flavored medicine!). I had anticipated this. It was why I called Hospice.
The first thing I discovered, which did much to alleviate some of Mom's distress, was that in her twisting and turning and bending attempts to lessen the pain she had dislodged one of her cannula spouts completely out of one nostril, which put the other into a tilt that blew most of its oxygen past her other nostril. Fixing this flooded what was a previously pale face rimmed in Distress Red with a more normal shade of pink, although the Distress Red did not disappear.
By the time I had been given full instructions on how to administer the morphine, my mother announced, with astonishment, "The pain's gone!"
Apparently, the acetaminophen kicked in and did the trick. The nurse cautioned me, though, that, if it should return at the same or higher intensity later in the evening, it might not be a bad idea to attack it with morphine instead of giving Mom another acetaminophen. If the pain is going to recur with acetaminophen, it may not with morphine.
I recorded, of course, on the spot, the detailed instructions, caveats and observations the Hospice RN gave me regarding the use of oral morphine. I've placed them in a post over at The Dailies. I feel bound to mention that I have not published this information in the spirit of global "how to" instructions. My purpose in publication is threefold, listed in descending order of importance:
- For my reference;
- As a continuation of my effort to record my mother's medical history as concisely and meticulously as possible;
- In the interest of the kind of curiosity to which I am prey and which, I imagine, I share with many people, the desire, when reading something, to wonder about the hows and whys and the need for ever more information until my curiosity is satsified.
After the RN and I closed out our conversation, Mom announced that, "I think bedtime is order." Her voice and manner were even a bit jaunty, which did much to relieve my reactions. I agreed. We took it slow, administered a much needed breathing treatment, used the wheelchair (of course), into and out of which she transferred with ease. Bedtime prep proceeded as usual. I obsessively asked her, as each movement was performed and sometimes when none was being performed, if she was feeling any pain. Her constant response was, "No, not at all." At one point, on the toilet, probably while she was having a bowel movement that I didn't detect until she arose, she mentioned, "I'm feeling a little discomfort back here," reaching around with her hand to indicate her lower back. The area, though, was a few inches lower than where the hard pain had been. She labeled the discomfort as "normal" and noted within a minute or so that it had disappeared.
Even though her day began at 1400, she was clearly ready for sleep at 0030 this morning, when she was finally abed. Pain is exhausting. It had exhausted her so much that she decided to put off watching the rest of a PBS program, Born to Be King: Charles at 60, I'd taped for her and with which she'd been inordinately enchanted when the pain struck. That's exhaustion, folks. Nothing gets between Mom and her Royals; well, as it turns out, almost nothing. She's slept peacefully through the night. I stayed awake until 0200, tense and waiting for what I feared would be a return of the pain once the acetaminophen wore off. Didn't happen. Her breathing, too, has been even and easy throughout the night and morning. She is not sleeping in any kind of an odd position.
The RN and I briefly discussed possible causes, mostly in an effort to prepare me, should any other related symptoms (discussed in the Dailies post) appear that suggest that a further look was in order. Mostly, though, as the RN reminded me, Hospice is much less interested in the genesis of pain than in its relief. I'm pretty fairly indoctrinated into this philosophy, by now, but, I have to say, I had a few moments, last night, when I was rabid with the desire to know why this was happening. I no longer feel that way. I'm just glad the pain is relieved. I was surprised and pleased, in fact, to discover that I have so incorporated Hospice's Palliative Care philosophy that when the RN mentioned that if the problem is a compression fracture of the spine a hospital visit might be in order, I was careful to mention that, if such a visit could be avoided, if, for instance, nothing could be done, considering Mom's current health profile, other than confirming the existence of such a fracture and if that information was not necessary to handle its presence, I'd rather not put my mother through a "twisting and turning" hospital visit.
I was cool, and, of course, very focused, not only through the episode but through the rest of Mom's evening. I allowed my demeanor to sway in accordance with Mom's levels of distress and relief: Intense, when treatment was needed, relaxed when it was no longer necessary. My focus continued as I remained awake after she'd retired and peripherally attended to the monitor. When I retired I immediately fell asleep. Good sign that I'm taking this new development in stride.
This morning I had a short episode of sudden weeping as I reviewed the events of last night. It was sort of like someone shaking their hands after witnessing something they'd never imagined, "good" or "bad". When it started I expected it to last for several moments and, perhaps, set the tenor for my day, but it came and went and left me settled and sturdy in its wake. I'm surprised to discover that I was never frightened. I experienced, certainly, an extremely heightened level of attention and concern but didn't experience even a hint of freaking. I was able to easily move back and forth between my discussion with the RN and Mom's distress in a highly appropriate, timely and functional manner. I guess I've learned a thing or two in these last 12 years of caring for my companion, my mother.
I have been concerned about how I would react if and when my mother experienced unusual, hard pain. I'm satisfied, now, that I'll be absolutely present in her moment, which will be necessary, and able to maneuver through it with clear thought and fortitude, no matter what the result. I even found myself thinking, after the weeping session, Pain happens. It's a part of life. Endurable or not, agonizing or not, at some point, for one or more of many reasons, it ends. We have no choice but to deal with it, in whatever manner makes sense to us. I want to make graceful sense in my mother's life...I want to validate her experiences, always, and tend to them as necessary in order to make sure she is able to negotiate through the rest of her life with as much interest and spirit and will as she cares to summon. I want her to do this in comfort. I'll use this as a yardstick to determine my actions in her life.
Sounds like a plan.
P.S. [Some hours after I published the above post] I just realized that perhaps I need to define an eccentric term. What I refer to as "Cold Pack" is normally called a "Comfort Pack"...but, it's kept in the refrigerator, so, for some reason, probably because we have yet to use it and it's been in our refrigerator since a few days after June 29th, I call it a "Cold Pack". Just wanted to clear possible confusion in case anyone on Hospice is reading.
I've been meaning to post, here, for the last few days.
On a twice daily basis, at least, I've been mentally writing posts, vowing to get back to the computer, then something distracts me and I head elsewhere, in some cases securely locking those intended posts away from my conscious mind. Perhaps, later in this post, I'll return to an old habit and try to dredge up enough to list make-shift titles for those posts and reminders. In the meantime, here's what's been going on the last few days.
Mom is battling a cold. This has been going on for, oh, today, I think, will be the fourth day. This battle has caused Mom to be uncomfortable (all the sneezing and nose running) and more tired than usual but, happily, not so tired that I haven't been able to coax her out of two potential sleep days. The first potential sleep day almost occurred on Monday. She was hard to rouse from her nap. The only technique that worked to sit her on the edge of her bed was a reminder that she could not sleep through the night without a change of underwear or she'd be swimming in a pool of her own urine. Thus motivated, I quickly slapped a breathing treatment on her (not one of her favorite activities, by a long shot) explaining that this would keep all that opportunistic mucus being produced by what I was finally recognizing as a cold from sticking to her lungs and causing potentially worse problems, like pneumonia. Although she had sworn, while abed, that she wasn't interested in eating, once upright, her nose running well and we'd indulged in a bit of bedside chat, she wondered if there was "anything interesting around to eat. I'm not that hungry," she said, "I just think I need a little something to hold me up."
I immediately went into Design a Bedside Evening gear. I love our rare and sweet Bedside Evenings. First of all, the TV isn't on for most of the evening. This is a rare treat for me. My mother is an information and drama junkie and, despite her enjoyment of me reading aloud to her out of books that pique her interest, despite her delight in conversation, despite her now-and-then interest in games, it's not unusual for her to idly wonder, in the middle of some other activity, what she's "missing" on Animal Planet, The History Channel, PBS, TCM and The Hallmark Channel (which she calls "the movie channel"). The Hallmark Channel is a relatively late addition to our personal channel line-up. She didn't used to have a taste for the sweetly romantic, mildly dramatic stories that are a, well, a hallmark of The Hallmark Channel. From our daily watching of the later episodes of Touched By an Angel, the ones not yet on DVD, though, she's viewed the channel's ubiquitous self-promotive advertisements for their brand of drama and voiced interest in just about every one of the subjects of the teaser ads. I guess I shouldn't be surprised. Although I've never known my mother to slaver over love stories, sweet or otherwise, she likes "the new" and these types of dramas would certainly classify as a new interest. She's devised a hilarious pick-apart strategy for them and it's a never ending source of entertainment for me to discover what she considers "unrealistic", "silly", "heartwarming" and just plain "nice" in these shows.
Another reason I like Bedtime Evenings is that they usually occur when my mother isn't feeling very good physically, so they have the same cozy, intimate atmosphere of childhood sick days, for me as well as her. It's a pleasurable challenge to figure out what my mother will consider tasty, for instance, when she's eating off a TV tray from the edge of her bed. When an evening takes place in her bedroom the cats invariably migrate there, so her bedroom becomes "the whole fam-damly" room. In such a small space, the cats interact, between themselves and with us, with vigor. Mom and I also have lots more "I wonder if..." and "What do you think about..." conversations in bedroom-close quarters. Every time we have a Bedside Evening, I am always reminded of specific instances in elementary school when I was sick and would accompany her to a very special room at whatever school in which she happened to be administrating or teaching, always full of toys, crayon-on-paper activities and ginger snaps. Mom would check in frequently during the day, feel my forehead, rub my back a little and ask how I was feeling. It was always to my advantage not to admit to feeling too good. Once, some years ago, long before she and I became companions, I asked her if she knew that "sometimes" I faked being ill as a child. She knew, she responded, when each of us girls was faking it. She went on to say that she figured that on the days when we were faking it, for one reason or another we needed a "sick day" and we each knew what was best for us. "None of you girls ever did so poorly in school that you couldn't afford a not-sick sick day," she added.
At 2330 on our Bedside Evening she decided she was ready to retire for the night. Within 15 minutes of lights out, though, an unusual noise from the monitor receiver I have in the living room prompted me to check on her. She was sitting up in bed. "You must be psychic," she greeted me. "I was just going to come out to talk to you about something." In the effort to reseat herself on the edge of the bed she'd forgotten what had been so important that discussion was required but we continued our Bedside Evening for another hour, I was able to get not only a little more fluid in her but her third breathing treatment accomplished and we polished off the night imagining possible scenarios taking place among dead relatives "in Heaven":
- Mom once told me a story about her father, who loved to fish, deciding to coax her mother, who was not a "fishwife" in any sense of the word, into accompanying him on his very favorite activity, "when they were still young and in love". Grandma finally agreed. During the fishing session in question, though, which commenced before dawn one morning, which was my grandfather's favorite time to fish, she insisted on bringing a lantern, a book, and reading in the boat, to my grandfather's exasperation. Monday night, as we discussed the current residences of Mom's dead relatives, when I speculated that both Grandma and Grandpa were probably "in Heaven" (she's not so sure about some of her other relatives, including her brother), she opined that, if they were, they were probably reliving that fishing incident and both were probably unsure about whether they were in Heaven or Hell.
- Although, being fundamentally genial, she is always reluctant to speculate on where, exactly, the souls of dead relatives might have been assigned, when we talked about her sister's and brother-in-law's deaths we rehashed our assumption that her sister was probably thrilled, upon death, to be free of her husband. We remembered that someone, we're not sure who, it could have been one of us, upon the very sudden death a year and a half later of her sister's husband, speculated that Mom's sister probably wasn't particularly pleased to suddenly be saddled, again, with her husband. "I hope they're in separate places," my mother said on Monday, "even if they're both in Heaven."
- Regarding the disposition of her brother's soul, about whom she once said, when I reminded her of his death by saying, in response to her asking if I knew what he "is doing now", "He's probably playing the harp," which got the point across, she responded, "Weeell, you never know, he might just be shoveling coal."
I was surprised to hear this, as she asks about her brother's whereabouts far more often than she does her sister's. On Monday night I reminded her of what she'd said. She "remembered", in the sense, I think, that she processed what I told her and approved it as something she's sure she's thought at one time or another.
"Why did you say that?" I asked her, once we were both firm in the memory of her statement.
"Oh," she said, "I'm not sure, but he could be a little demon."
"What," I cued, "do you mean?" I gave her some leeway by recalling the story she's told about her brother stirring up an ant hill and somehow convincing my mother to lay on top of it.
Mom chuckled at the memory, then added, "That was one of the lesser of his crimes."
I tried to solicit more information but, from then on, she wasn't divulging. I'm not sure if it's because she couldn't remember specifics, only the indignant wakes of such episodes, or if she simply wasn't interested in rehashing his more significant "crimes".
- I asked her what she thought her maternal grandfather was doing in Heaven. This is a man who died the year my mother married, so I never met him (although I wish I had) but he played such an important and felicitous role in my mother's life that she asks about him as much, if not more, than her mother or "Dad" (I always have to ask, when she inquires about "Dad", whose "Dad" she means). Last night she imagined, "Oh, I'm sure he's running the church." He was a minister in life.
- I also asked about her youngest maternal uncle, who is often mentioned of a piece when she asks about her maternal grandfather, as the two lived together for many years when her uncle was Director of Music at Cornell College in Mt. Vernon, Iowa. When Mom attended college there she lived with them and recalls this period more frequently than any other period in her life. My assumption is that it was one of her favorite times.
Her response to my query about her uncle was, "I can't imagine. I hope, whatever he's doing, he's happy." This reminded me that I'd heard he'd suffered from an entrenched depression through much of his later years, so I had to ask if she felt he also suffered from depression early in his life.
"Well," she said, "he was a deep thinker." Certainly a true-to-my-mother response, whose character is so removed from depression that, when I was younger and in the habit of saying, "I'm sooooo depressed," she would immediately and firmly correct me, "You're not depressed, you're discouraged." Although this used to irritate me, truth is, I think she detected something fundamental in my character: That depression descends upon me when I have been discouraged by situations, people I know, the world, humanity in general, etc. When I feel myself slipping into serious depths it's not uncommon for me, now, to remember what she said, search out exactly the object of my discouragement, then begin the hard work of changing my attitude. It doesn't always work, but, when it doesn't, it's easier on me to think that the fault is my tendency to luxuriate in the attitude of "discourage"-ment, not in the object about which I am discouraged.
The last few nights have thrown me into a rumination on sleep, wakefulness and death. As each of the nights has revealed itself as part of a slower and softer than usual day for my mother, I've wondered, as I've initiated my attempts to rouse her to at least a modicum of uprightness and movement, whether "this night" is the night when I will discover that her lung cancer is requiring ever more sleep from her and we've turned yet another corner. That's why both nights have surprised me. With each coax I've tried to be alert to the possibility that "tonight is the first night..." of such probable days. Thus, the ease with which I've been able to manipulate her from a burgeoning sleep day into a shorter (but not by much; yesterday, all together, she was awake 9.5 hours) than usual day has surprised me. I've been wondering whether, and hoping that (and, you know, the longer she lives the more likely are days like this) I'll recognize the signs and graciously allow my mother the dignity of of acting on what she knows she needs when she needs it, rather than trying to fight against the inevitable. I hope so, and, I think I'm getting there. I'm no longer bothered by her prodigious and increasing sleep habits, although, occasionally, I wonder whether I'm doing "the right thing" by allowing her sleep sway. I look forward to the day when I will no longer wonder, when I will simply kiss her "good nap" or "good night", bless her sleep without the slightest reservation and go about my part of our business as she goes about hers.
Which reminds me, in the interest of informed observation, one of my most valuable tools in assessing Mom's state at any particular time and, as well, in order to make sure Hospice has appropriate and detailed information when they approach the points where they feel the need to judge whether my mother should remain on Hospice, night before last I compiled all the "Sleep" records I've been keeping over at The Dailies into a Sleep Report, which you can access at the immediately previous link, if you're curious. I took a period of 68 days and divided it into two 34 day periods. There is a short discussion of my observations vis-a-vis the report in this Dailies post. Nothing spectacular, really, but I think a definite, gentle trend is showing.
I hadn't planned on going to the trouble of translating it into CSS and HTML and uploading it but, quite by accident, I discovered that the version I have of Microsoft Word (I'm still using the 2003 version) allows the user to instantly convert any document into a web page. I couldn't help but try it. Turns out, conversive properties include both CSS and HTML. The process produces pretty dirty code, full of proprietary junk, which doesn't surprise me. Other than that, it worked beautifully, translating my document instantly into a tidy web page, the product looks exactly like the report I printed for Hospice from the original document, minus, of course, my mother's identification parameters and the code was easy enough to read so that I was able to make a color change in it. It was the product of one of my special play times. The immediately previous link is to a long neglected journal which I was prompted to continue a few days ago after reading about the subject of the post to which this link will direct you. Oh what fun!
Speaking yet again of sleep, I'm three minutes away from Mom's 12 hour sleep mark. We agreed, last night, that I'd try awakening her at this time. About an hour ago I heard her coughing and misinterpreted it as a reconnaissance cough. When I entered her room, although her eyes were open, she asked me the time. When I told her, her response was firm, "I've got another hour."
Hour's up, Mom. Time to figure out how to fashion another delightful little sick day, if necessary. I already have plans...
Ooops! I got distracted, editing this post pre-publishing and went on too long (which is why I rarely edit posts before I publish them the first time)! Well, I'm sure Mom's not going to begrudge me an extra half hour, certainly not today!
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson