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.
My kind of day, today!
It's our first cool, cloudy day of the year. Rain has been predicted, a better than average chance, although we haven't gotten much up here, but it looks like rain, so I'm satisfied. The heater, which I keep just inside the "Comfort Zone" at this time of year, kicked on this afternoon while the sun was still shining. All windows, except the one above the sink in the kitchen, have been closed all day. When I awoke to the day I couldn't wait to dash outside in shirt sleeves and soak up the wind, the gray, the low temperature and the humidity, so I decided this morning would be an errand morning.
I serendipitously managed to get a flu shot, too, no waiting. As I went here and picked this up there, I decided, knowing that today is not my mother's favorite kind of day, that we should have a fragrant, flavorful, stewy sort of dinner. I decided on a home made sausage marinara, simmered all day, over shells topped with lots of Parmesan cheese; 9 grain garlic toast slathered with my own garlic-basil concoction; Mom's favorite store bought apple pie (Marie Callendar's Dutch Apple), with freshly whipped cream, if she'd like. I considered making one, as I'd have a piece of one I make, I truly cannot stand apple pie in general and have to really be in the mood to make one I like, stuffed with unpeeled apples and raisins and pecans or dried cherries and walnuts. I wasn't in the mood, I decided, so I got the Marie Callendar's pie and a carton of my favorite lemon sorbet for me. When I told Mom what we're having for dinner, tonight, she rolled her eyes and asked, "Can we have dinner for breakfast?"
A few days ago I started reading yet another book. Our Hospice RN mentioned it to me: Final Journeys, yes, by one of the authors of Final Gifts, Maggie Callanan. As I mentioned to our Hospice RN a day after I received the book and had cracked the binding, "This is much more the book I needed to read than 'Final Gifts'. That book was okay," I said, "it was interesting, but it was mostly observational and, anyway, we're not there yet." This book, though, Final Journeys, has the recipe. I'm only on page 47. It's packed tighter than Final Gifts, too. So far, it's pretty much been validation of the living process my mother and I have devised over the last several years. I have to say, it feels good to be validated. As well, somewhere in these last 47 pages it confirmed what I thought, that most people sign onto Hospice late into the dying process. She suggests that earlier sign on would make things easier on everyone involved in the process of terminality. I have to agree. My experience tells me that it does. After having read as little of this book as I have, I'm even more grateful than before that we were offered Hospice as early as we were. If we hadn't been offered it I, frankly, wouldn't have known if and when to choose it and, if we'd been offered it late, I wouldn't have been in the proper state of mind to become familiar enough with Hospice to utilize it to our needs, I think.
I've already begun highlighting and writing notes, of course, and even though I'm backed up by two reviews, I plan to review this book, too, probably in my usual quote-and-comment style.
By the way, today has been a surprising movement day for my mother, even as it promises to be a day fairly packed with sleep. Considering all the falls she's taken, lately, you might want to check out today's review at Life After Death Sentencing, if you've been keeping up on it. The link will take you right to today's post. Since the day isn't finished, neither is the post, at this point, but it's interesting, anyway, I think.
Oh, yeah. I want to mention something that occurred to me as I was reading the above mentioned book last night. A different track of my mind, for some odd reason, was, as I read, thinking about my lapsed association with The American Society on Aging. I let my membership lapse because it came due during the cancer diagnosis/hospital/rehab period in our lives during late spring/early summer of this year. I hadn't actually gotten around to reading much of the literature sent to me (as usual), hadn't really been a member active in the organization (although I refuse to say that I wasn't an active member...I believe my involvement in my mother's life qualifies me as a very active member) and membership isn't cheap, so, you know, I'd let it lapse. Thing is, though, it's been bothering me that I lapsed ever since. I have very strong feelings about my value to the organization as an intensely involved, contemplative, writing companion to An Ancient One. I doubt that there are many "on-site" companions who are as intellectually involved in their journey with An Ancient One as they are emotionally, and meticulously reporting on that Ancient One and that involvement. Anyway, even though this book isn't about aging and doesn't restrict itself to death as it visits An Ancient One, as I was reading the book with one part of my mind and thinking about my former association with ASA with another, as I was was absorbing a section in the book which explains that people die as they have lived a third part of my brain kicked in and told me: "I am a scholar of the reality of aging in this time and this place, courtesy of my experience with my mother." So, now, I am settled about my value to ASA and its value to me, even if I am not at a point in my life, at the moment, where I can exhibit that value through active participation with the organization. I need to re-up with them. It's important to me. It is equally important to them, especially since, in reading through the roles of highlighted members, they are primarily academicians, researchers, planners and administrators of aging programs and theoreticians. They don't have anyone like me, someone who's in the trenches.
I'm letting my mother nap as long as she likes, today, within reason. I think she needs to sleep off the gray and come to in a house filled with the aroma of comfort food. Think I'll do a little more reading, while I have some undeclared moments.
The Hospice PT called this morning...
...to discuss setting up an exercise program for Mom. She'll be showing up sometime next Monday afternoon; she assures me she will call in the morning to scope out our day. I was very clear about Mom's hours. I also had to ask twice for a fairly good pinpoint on time.
When I spoke to her I was under the impression (which I invented, I must admit) that someone besides me would be conducting the therapy sessions. Turns out I will, after the PT evaluates Mom's native movement abilities and shows us some exercises. I expect that we will discover that, at one time or another, we've done all of them. We may still be doing some of them. It's going to be interesting because, as is common, my mother will work her little heart out for others but not for me. I mentioned this to the PT when she informed me that I'd be responsible for conducting the exercises. We'll see how that works. I expect Mom's Exercise Trajectory when Being Led by Me will be typical of in the past: While she remembers that she's been assigned these exercises by someone else, we'll do fine. As she forgets that these are third party recommendations and begins to disbelieve my reminders of this her effort at the exercises will lag. I'm not disturbed by this, just citing observation to the purpose of prediction.
Mom and I had a pointed discussion last night about how she needs to make sure that she performs as well as possible in movement at any particular moment. The conversation came up because during a couple of transfers she flatly refused to back fully up to one chair or another before sitting, thus ending up caddy-wampus in positions so uncomfortable for her that I found it necessary to reach behind her, grab her by the waistband of her pants and reset her. Mom was clearly tired last night; it had been an exciting day; but she was not so tired as not to be able to move with a bit more exactness than she displayed. I could tell, too, that her attitude was, "I'm tired, tonight...so I'll let Gail do it."
It's not uncommon for me to let this attitude go, especially in the evening, but I was tired, too, physically as well as in otherwise, so I addressed it. "Mom, let me explain something. I need you to always operate to the best of your abilities at any particular time," I said. "I need this because there are times, like tonight, when I'm tired, too, and when I risk back injury when I take up slack for you that isn't necessary. If you were to hurt your back, as you did a few years ago [five this month, to be exact], well, we just carry on. If I hurt my back, though, that endangers my ability to take care of you. I don't mind picking up the slack when you clearly can't, even when I'm tired. I do mind it, though, when you just don't feel like it but are able. Do you understand what I'm saying?"
She looked sheepish, an excellent indication that I'd caught her "in the act". "Oh, yes," she said. "I understand." Her expression turned to one of worry. "Is your back hurting?"
"No. I'm being careful, and I've got a strong, uninjured back. But, you know, I want to keep it strong. It's the 'backbone'," I joked, "of our ability to remain together."
She got the joke and gave me one of her ironic, comically obligatory grins, signally that she thought it was a bad pun.
Anyway, this seemed to do the trick. When she is tired she has this habit of saying, "I am!!!" when she's not. Last night she didn't say, "I am!!!" once, after our discussion. And, when I asked, she did.
Sometimes I think that this is the most valuable relationship asset that we've earned over our many years of being together as we are now: Neither of us is afraid to be our self; neither of us is intimidated by correcting the other or, for that matter, taking correction. We also allow the other episodes of not "being nice" when we don't feel particularly nice. Sometimes, when episodes like the above happen that involve me lecturing her or, for that matter, her lecturing me (and, believe me, I come by my ability to lecture honestly) I find myself later reflecting that not only can I not imagine the stress involved in caregiver relationships about which I've heard wherein the caregiver and/or the recipient simply haven't been together long enough to be completely comfortable with each other, I don't want to imagine these kinds of relationships. I'll bet that, at least once a day, I thank the gods that my mother asked me into her life as an elder early, so that we had plenty of time to adjust to one another and, well, learn how to read and allow one another. When it comes to caregiving relationships, I think, time is the key to a successful relationship. If you can't or don't allow enough time for mutual observation and adjustment, everything is much harder and mistakes, I think, are more likely.
Still a lag on migrating this site to the new domain. Yesterday was a slow, tired day so I didn't get nearly enough accomplished. I'm hoping to migrate this site this weekend but I still have a couple of search set ups to do on a couple more site sections. Not that they take very long...I'm just still dragging a little. As well, I realized, while setting up site search engines, that there is a rather long duty I need to perform that will throw all of the archive links to the Dailies Archive, links from here to there, out of whack. I started that chore, which promises to be a looooong chore, yesterday, in order to figure out an efficient MO for it. The modus having been determined, though, I've stopped so that I can put my computer energy toward migrating this section as quickly as possible. And, still, I'm not much in the mood for computer stuff, again, today. So, give me a few more days. The links that are out of whack all exist, at the moment, in Archive Two, June through July of 2004, in case you're wandering backward and click into some of them.
Hmmm...think I'll do some reading, even though I should probably be doing something else.
Third fall in three weeks.
You can read all about it at Life After Death Sentencing. The link will take you to today's post. The upshot, after talking to our Hospice RN about it, is that, despite the earlier decision that a bed monitor would be more trouble than it was worth, it's needed, now. It's not that the monitor didn't work, it's that my mother made no distinguishable noises, not even a change in her breathing or her usual coughing when she sits up, this morning. When she was on the floor calling so weakly for me that I thought it was Mr. Man at the Arcadia door warbling, I was sitting right next to the monitor, listening to...well, the sounds of an empty room.
I suppose, at this point, it would seem as though I should be freaking, but I'm not. It's no surprise that my mother's body is weakening, even as her spirit shows no decline. Frankly, I'm pleased to know that my mother still has the sense to grab for something when she feels herself start to slip. It's truly amazing to me that even as she is losing more of her balance, she has the wherewithal to compensate on the way down so as either to prevent or ease the possibility of injury. She never fails to amaze me. At this rate, she deserves to be taken up to heaven without having to go through death, just like her fabled Bible favorite, Methuselah. If and when that happens, I hope I get a chance to wave good-bye.
Anyway, I've got some mother things to do. And, I'm really tired. This week is going to be another "short on sleep" week, it seems. I'm beginning to feel it. It may be a bit longer than my earlier projection before I get this section of my journals migrated.
Ah, well, better go.
Journal Address Change Happening within 48 Hours, Give or Take 12-24 Hours
I am exactly half way through, by date, fixing the links in the final archive. It's going quickly. That archive has less than half the number of posts of the rest; less than this section of the journals, in fact. Apparently I wasn't particularly loquacious (for me) in 2007. That was a surprise to learn. It was the year I began taking St. John's Wort, too, fairly early in the year. Maybe my silence that year is good indication that The Wort calmed me down. As well, I wasn't nearly as "linky" as I had been in previous years.
So. Here's the plan. I expect to finish the fifth archive and attach the search engine within the next 24 hours or less. At that point I will transfer this journal over to its new domain home, to which all other sections of the journal have been published except the section with all the medical tests results. "Immediately" (meaning that I assume when I do this it will be during one of my mother's sleep periods) after I republish I will send out a blanket email to everyone whose address I have on this computer (no, I still haven't restored my Mac files, but plan on doing that next, after republishing is done here [yeah, right]) letting everyone of whom I know who visits my journals that I've switched the url.
Don't blanch, though. If you click into this url Blogger will now immediately allow you to chose to be redirected to the index page of this journal, thank the gods. Once all that is done I will, first, reset the search engine for this section, second, correct all links in the Links section over there to your right and third, correct links in the 2008 posts, starting from the beginning of the year and going forward. There are still miscellaneous links on certain sections of these journals that need to be changed, both internal and external, primarily the moving, food and Dailies sections. Getting to those will take a while longer, but I promise I'll work steadily.
At some point after the switch and the link repair I will take some time to search out people who have linked to this journal and sections thereof with old and no longer functional urls, letting them know of the new addresses, in case they're interested. I recently noticed that one carnival in which I participated has deleted my post, for instance, since I lost my old domain. I imagine there are a few other sites that have deleted me, as well. Fortunately, up through the loss of my old domain I kept a list of sites that linked to me. It's in my Mac files, of course, so it may take a bit longer for me to retrieve that and start that work.
The only glitch I can see in this schedule is the possibility (slight but real) that when I switch to ftp publishing Blogger will screw up this section's homegrown template. I hope that won't happen, but it happened once before. I'm not sure what I'll do if that happens, but, whatever it is, I'll try to do it fast.
Be aware, as well, depending on what is going on here (the final construction date for the last of the grab bars, for instance, has been postponed until tomorrow...that might throw a wrench into my schedule; as well, my mother continues to revive, which may mean she'll be up more...well, you know, life intervenes), the schedule I've set, above, may lengthen or shorten, a bit.
Just to let you know, I do not think I'll be establishing any more archives for the remainder of my mother's life, even if she manages to see in the next New Year, until, maybe, she dies and if I continue journaling after her death (which I think, at this point, I may, at least for awhile); so, addresses for these journals should remain set and stable from here on out. I own this new domain. That should count for something.
To all of you who have migrated with me over the last nine months since I lost my original domain name, I thank you soooo much for keeping up with me. I'm sorry to have to move on you, again, but, you know, I am just as susceptible to domain vanity as the next person and, anyway, I really missed the ability to do accurate searches with these journal borders. I love the search engine to which I subscribe; even though the version I use is free, it beats the pants off every other internal search engine I've encountered, including Google's internal search facility.
Later, my friends and acquaintances. Later.
I've been thinking through my hydration dilemma with my mother...
...and I believe I've hit upon my personal solution regarding how to tell if it is time to put aside Water Torture. My mother is "famous" for almost never losing her appetite. The last time her appetite lagged was when she'd been at the intermediary care home in late May while I was "respiting" (yeah, right) for five days and decided she didn't want to eat. This is soooo unusual for my mother. Turns out, she simply didn't want to eat when I wasn't there. My mother has an appetite even when she's sick. Sometimes her appetite may not be as robust as usual and, certainly, over the last few years, "robust" has come to mean two meals a day instead of three, which isn't odd, really, considering how prodigious her sleep habits have become within those years. I can remember times, some fairly recently, when she's awakened from her nap and tells me she doesn't want to eat. Since there are a few of her medications that are best absorbed with food on the stomach, I usually cajole her into eating a piece of toast and drinking some ginger tea at these times. Invariably, as she eats the toast, her appetite returns and she either asks for more toast or inquires, "Do we have something more substantial in the house? Now, don't go to any trouble..."
Even when she's seriously ill and in the hospital, she never refuses a meal tray and usually cleans it. When she had the flu early this year her appetite flew nowhere.
So, I think I've got a reliable formula. If my mother loses her appetite and is refusing liquids, this would be a good time for me to consider abandoning Water Torture. This, of course, assumes that she has not lost her appetite due to a systemic problem and/or an illness that can and should be addressed.
Mind you, I'm not recommending this formula for all caregivers to Ancient Ones. Slight imagination tells me that the formula will be different for different people. I wanted to mention this, though, because I think it's important to stress that, well, "for everything, there is" a solution; a point of observance that may very well hold pertinent clues in how to treat the very old. Here's the thing, folks: We must remember that, as I've mentioned before, the older we become the more individuated we are from our peers. Thus, Mrs. A may be refusing fluid because she's actively dying. Mr B, though, may be refusing fluid because he's forgotten what it is to thirst, but he hasn't, also, put aside his thirst for life. Cee may be refusing fluid because of a distaste for the form in which it's delivered. Thus, allowing Mrs. A to dehydrate is appropriate. Allowing Mr. B and Cee to dehydrate, though, is, actually, in our society, anyway, and many others, besides, a violation of what we have come to think of as a human right, the right to live. It requires specific focus, something for which institutions (and, sometimes, institutional workers, even in one-on-one situations) are not designed. Reminds me of something I was thinking, yesterday, while driving on an errand: If we persist in ignoring our individual elders, we can be sure that when we are elders we will be ignored as individuals. At a time in the span of a human life when individuation is the key to definition, ignoring can be tantamount to pronouncing an untimely death sentence. We need to be very careful and acutely aware when dealing with elders. If we are, others will learn to be the same and maybe, just maybe, when you are old, someone will be appropriately aware of you.
Am I a Control "Freak"?
Emphasis on "Freak". Don't answer that yet.
Off Topic Prologue: My intention was to awaken my mother at noon, today. It is now 1159. I've decided to wait until I've finished this post. File this one under: "Caregiver Takes Care of Self...First".
Our regular Hospice RN, whom we greatly value and enjoy, visited yesterday. During the course of the visit many aspects of my caring of my mother were discussed, a most important one of which, my use of furosemide, is thoroughly covered at the immediately previous link. This discussion led indirectly into consideration of hydration; "indirectly" because, although intimately connected with all the aspects of furosemide use that were laid out, yesterday, the hydration issue came up because, at one point toward the end of the visit I prompted my mother to drink some more of her tea.
Mind you, our RN had already waxed eloquent on how I need to relax and consider that the weekly Hospice visits were designed to take some of the weight of mother-observation-and-consideration off my shoulders. I had to agree, during this portion of our discussion, that, while I am relaxing, I'm not nearly as relaxed, yet, as I could be while we're nestled in the arms of Hospice. I made no excuses for this. Our RN mentioned, in summation, that it would be to my benefit to take full advantage of this because (this next is a paraphrase) "...you'll be caregiving a lot later."
My reaction to this statement was internal: I surmised that, despite the fact that he knows I've been involved in intense needs caregiving (emphasis on "intense") with my mother for for nigh on 12 years, now, the reality of what I've been doing isn't clear to him and he has no idea how intense many of the episodes, many of those prolonged, have been. If he thinks I have no idea what "caregiving" means, and that I'm not really doing that, now, nor never have, well, he's misinformed; but, you know, whatever.
Anyway, when I prompted my mother about drinking, the stage was set for our RN to respond, "If she wants to."
Oops! Wrong thing to say to the likes of Caregiver Me! I started by telling him that if I had followed this if-she-wants-to directive (with which I've been scolded, before) my mother would have been dead some several years ago. I explained to him that I am in sympathy with the fact that, as people approach dying they refuse fluids and this is most likely a part of the "active dying process". However, I continued, old people often lose their sense of thirst long before they are ready to die. I talked about how it's a struggle, one I call "water torture", which I carefully delineated as torture for me, rather than my mother, to get just under two quarts (not two liters, I emphasized, which is an average recommended fluid intake for my mother) of fluid in her throughout any particular day. Some days I manage to get much less and, yes, when a day like this occurs it is often followed by a night in which she drinks from the quart cup with a straw left by her bed at night; not enough to completely hydrate herself, mind you, but enough to signal to me that, on occasion, when her body is tumbling into severe dehydration, it can sometimes be relied upon to trigger a thirst response so strong it awakens her out of her first favorite activity. Sometimes. At one point I said, "I'm very familiar with the hydration issue in regard to the elderly. I've written (meaning in my journal, about which he knows) a lot on it over the years. It's tricky. I know this."
The nurse accessed some handy-dandy online software he has for calculating individual fluid requirements. Seems my mother's requirement is actually slightly more than two liters. So, as one doctor famously said, "She runs a bit dry" a lot, probably.
In the meantime I also explained to him that, in regard to the hydration issue, this is the yardstick I use: As long as I am able to detect, to my satisfaction, that my mother is not in her "active dying phase", I have to operate under the assumption that while she may not want to drink, she wants to remain alive and kicking and the only way to ensure this is to apply water torture, here and there, usually on a daily basis. Although I didn't mention the following, I suspect I will be able to tell when the appropriate moment comes to honor my mother's lack of thirst by the fact that "water torture" no longer works and she refuses to swallow fluids placed in her mouth. At any rate, one way or another, I think I'll know. I don't think I'll go overboard with the "water torture" business.
Anyway, nothing was really resolved between us. I assume he understood that I will continue to follow my current procedure, I will continue to have problems getting a decent amount of fluid into my mother, I will continue to use mild threats when necessary, such as "You can't go in for a nap until you've finished your tea," and "You can't have dessert until you've finished your coffee," (which is usually the second to the last 14 oz dose of fluids she gets before retiring), etc.
In summary, sometimes I get the impression that we, as a society, are far too willing to maneuver our Ancient Ones into a state of dwinding and "active dying" long before they are ready. I know, for instance, that if I honored my mother's wishes in regard to fluid ingestion, within 24 hours the problems would begin (problems we've had before in various measures): Constipation; high electrolytes; extreme lethargy and weakness. All signals of end-of-life dwindling. And, yet, I also know that my mother is nowhere near, at this moment, "ready to die", or, for that matter, "actively dying", whether or not she's ready to die. If I'm unsure I ask her, as I did this last Sunday.
I became familiar with a rather frightening "new" policy when my mother was at the rehab facility. It's considered the height of human rights. It involves not forcing a patient to do, or not do, anything, including drink fluids. And, of course, my mother was constantly dehydrated, a little to a lot, despite my attempt to get fluids into her when I was there, almost always constipated, usually much, much weaker and much less able to move than it turns out she really was once I got her home and properly hydrated (which took about 24 hours).
It's still really tricky out there. One the one hand, I applaud the notion that elders, even demented elders, have a right to dictate, in as much as they can, how their lives should continue to unfold. On the other hand, when you know, absolutely know, that an elder is not thinking in terms of dying but also has lost their ability to feel appropriate thirst, is it humanly right, in this society, at this time, to allow someone to ignorantly dehydrate themselves to death? Or, is it simply convenient for us to do so because, you know, old age is such a damned inconvenience in our society right now?
In answer to the question entitled above, let me answer it for you: If you consider that honoring my mother's desire to continue to have an uninterrupted, unspecified flow of decent days by making sure, sometimes with "water torture", that she remains well enough hydrated to enjoy her desire then, yes, call me a Control Freak; and leave us alone to continue to enjoy our unspecified number of days together as we have...and as we will. As long as my mother values being alive above the possibility of being dead, I'll continue to do everything I can to make sure that she is allowed to live, with panache, according to her definition of that word, including such things as supporting her when she moves so she doesn't fall into a deadly injury; seeing to it that her medications are adequate to her in order to keep her functioning at what she considers a smooth rate; seeing to it that she has the companionship she needs to feel as though life is worth rousing to; and, yes, making sure she's hydrated enough, one way or another, so that lubricated functioning is a given. All of these things go together. If we're going to abandon policing hydration, why don't we also abandon our concern about over and under medication? Safety of movement within the home? Adequate sociality to ensure a desire to remain human?
Answer me those.
Well over time for me to awaken my mother. She'll be thrilled with the extra hour, though. I can't lose for winning, there!
Although I don't do it often, I occasionally ask my mother outright if she's ready to die.
It's been at least a year, maybe longer, since I've asked her this. This morning I had occasion to do it again. Although it's obvious that she's recovering from something, probably pneumonia, and the antibiotics are enhancing this recovery, maybe even making it possible, when I was finally able to rouse her at 1430, a good hour and a half after her 12-hour-sleep mark, she was so lethargic and so not into getting up, combined with what is obviously a difficult "healing" (if that word can be used with any veracity at this point in my mother's life) journey through this pneumonia-like episode, after she'd asked me, twice, "why" she needed to get up, to which I'd responded, "Because, it's a new day, and, anyway, it's time for food, fluid and companionship," with which she was not impressed, I was prompted to ask, calmly, directly, "Mom, are you ready to die?"
She's heard this enough so that she knows what I'm really asking her is if she's at a point where she wants me to leave her alone and allow her to dwindle through what would obviously be final days. This morning she responded, "Yes," with what I thought might be a touch of irony but wasn't sure, then she settled deeper into her pillow and closed her eyes.
I was startled. I'd never thought about what I'd do once I received "yes"es to this question. I had to take a moment to think.
"Mom," I continued, carefully measuring the tone of my voice, "are you really? Are you sure ? Is this 'it'?"
She opened her eyes and glared at me. "Goodness, child! What do you think!?!?"
I suspected she was disgusted that I had the temerity to ask such a question, she always is, but she's never beat around the bush about it. I decided that I'd get her up on her ass so we could talk eye to eye.
After manuevering her into sitting position, she struggling a bit against my effort, I said, "Mom, I'm guessing you're not, but, this is important. I need a clear answer."
"I think I made myself perfectly clear." Purely indignant.
"Mom, I've got to explain something to you. You're on Hospice. You have lung cancer. It's not being treated, so it's not going to go away. Although it's happening so slowly it's barely detectable, you're getting weaker. Right now you're fighting a lung infection. I know you're tired. It's important, now, for me to know how tired you are. That's why I asked if you're ready to die. In the not too distant future, you will be. At that point I'll need to change the way I take care of you. That's why I'm asking now. Is this that time? Believe me, at any time you'd be well within your rights to decide to pursue a different course in your life."
She gave me a "Blah, blah, blah" look. It told me all I needed to know.
"Okay, then, if you're not heading toward the grave," I said this with decided jauntiness, "then you're headed toward the bathroom. Stay on your ass, there, I'm going to get your breathing treatment."
When she takes her first breathing treatment of the day, always immediately after she rises from a laying to a sitting position, since the treatments last about 15 minutes I spend the time in final preparation for bathing and breakfast: Choosing clothes for the day with her, getting the ham started, starting the electric water pot, making sure the bathroom is in order. So, I'm exiting and entering her room and having bits of conversation with her, often about and/or with the kitties, who are hyperactive during this period. This morning as I moved about and kibbitzed with everyone I couldn't help but wonder, with a woman like my mother, how will I know where we are on her journey toward death? Will she make a sudden sharp turn catalyzing a wholly different caregiving procedure or will she round the bend slowly, having days, here and there, when she's hard to get moving interspersed with days when she's sitting upright on the edge of her bed when I enter to awaken her? Will I figure it out? Is it okay to, for instance, allow for days here and there wherein she's sort of "practicing", I guess, for the final path out of here and into "there", where ever "there" is? Days when fluid, food, movement and camaraderie are severely diminished sprinkled among days when she's heartily Here and thirsty, famished and obviously in need of her regular medications?
Before today it hadn't occurred to me that she'd been traveling anything other than a "smooth road home". But, you know, I guess I need to expect bumps. I remember reading about a woman in Dancing with Rose who was on and off Hospice eight times, I think, each time appearing to be securely in "the dying phase"; then she'd revive. My mother might do this. I guess I will need to depend on her sturdy will to tell me when she's in one of those periods...and when she's decided to bounce back, for a bit.
Dying, I guess, when you have time to think yourself through it, isn't the most straightforward of journeys. But, then, neither is living.
I just hope I have the intelligence to follow Mom's living-while-dying prerogatives, especially as they might include turn backs, rather than trying to second guess what she's doing.
This is going to be weird; and interesting.
[Accidentally published in wrong journal at date and time below. Switched on 9/29/08 at 1015.]
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson