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

Apologia for these journals:
    They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
    For an explanation of what these journals are about, click the link above.
    For internet sources that are about caring for relatives with moderate to severe
        Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
        links section to the right.

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

Saturday, November 22, 2008
One of the checkers at one of our two main groceries...
...shares her name with my mother's maiden name. Thus, she and I always acknowledge each other, whether or not I end up at her register. When she does check me out, we chat about Mom. She's a sunny, optimistic, genial person, just like my mother...I've been meaning to ask her if she's also a Leo, as is my mother. I discovered, today, that she shares yet another trait with Mom: She loves to drool over the holiday magazine recipes. I bought a stack of them today for Mom...I'd been forgetting over the last few weeks despite Mom, bless her sugar coated heart, having reminded me numerous times that I "was going to pick up some holiday food magazines this time."
    About midway through today's chat with my mother's name twin, she queried, "Now, your mother lives in one of those little homes, doesn't she?"
    I chuckled. "Well, our home is definitely little, but it's ours. We live together."
    "Oh," she said, "I thought your Mom was on Hospice."
    "Oh, yeah, she is," I confirmed.
    "Hmmm...I didn't know you could do Hospice at home."
    "Yep, thank the gods, frankly. She's doing really well, we're into our 5th month of her first death sentence (the clerk looked a little shocked at my term but, other than that, didn't react) and I think we're going to celebrate starting her second six months on New Year's."
    "Well, good for you. My dad was in Hospice toward the end," she said, "and, even though he was pretty bad off, I still swear, he would have been more comfortable at home and probably would have lived longer, but my mom just couldn't handle taking care of him. It's good that she lives with you."
    Funny, I hear that a lot...the part about "at home...probably would have lived longer". "Actually, I like to say that we live together and that she and I are companions because, well, that's what we are."
    Mom's name twin looked up at me with a twinkle in her eye and a smile on her face. "Well, that's why she's doing so well! You're Mom's a lucky one. Can I adopt you after your Mom dies?"
    "How about if we adopt each other," I suggested. "That's pretty much what Mom and I did."
    "You got a deal!" I believe, if the cash register hadn't been in the way, we would have shaken on it.
    I left the store feeling super. Lately, I've been stressing, more than usual, which accounts for my more than frequent fussiness, about what, in this world, in this country, my life is going to be after my mother dies, considering that my society has already given me many messages indicating that it will consider the last 15 years of my life absolutely worthless, except for the fact that my society is waiting to turn those years into a mammoth stone to be pushed over the edge of my life at my mother's death, destroying my future, and I, frankly, don't feel as though I have the strength to fight this. I don't regret a moment of my years with my mother...and I wouldn't change anything, but, you know, I did it at the wrong time in the wrong society and that's not fun to confront, either. After the above conversation, on my way home from the grocery I was surprised to find myself contemplating the following: Over and over again, in these journals and in my mind, I have noted how blessed I feel my mother and I are during this period in both of our lives; why haven't I also considered that those blessing might continue after her death? Maybe they will, for both the spirit of my mother and myself.
    That's the power of positive caregiver conversation, folks. Speak nurturingly to your local caregiver, today.

    I've got a few minutes left before awakening my mother. Even though it's nigh on 1430, that will be her 12-hour-sleep-mark. I considered, last night, out loud, for her benefit, as a kind of preparation, awakening her at 1330, then I finished out her Dailies stats for yesterday and realized she's been up for 10 hours. She could use a full 12 hours after the last few "Bad Cancer Cycle" days and a full day yesterday. And, anyway, it's going to be a late one tonight. Last night one of the advertising channels showed the Christopher Reeve Superman I movie. My mother has been an inordinate fan of the Reeve Superman movies since each debuted in theaters, so we couldn't miss last night's movie. She was glued to the set during the entire three hours, including for the commercials. Tonight the first sequel is airing on the same channel. My mother noticed it being advertised, of course, so we are planning a Superman II night, with Papa Murphy's pizza, loaded with pepperoni and doctored at home before baking with onion slices, green olives, sun dried tomatoes and Parmesan cheese. Since the showing doesn't start until 2300 and continues until 0130 tomorrow morning, I figure, what the hell, let her sleep. She'll need it for tonight.
    Although Mom didn't move much, yesterday, she seemed to feel better, was up quite a bit longer than she has been, didn't resist (much, anyway) being roused and attacked both her dinner and the movie with gusto. I'm hoping yesterday foreshadows today.
    I've got one minute left before Zero Hour. Oh, I want to mention, I'm almost done correcting links. I'm on the last two sections, The Dailies sites. It's been going much faster than I expected. I hope I'm not missing any links but, if I happened to miss the one you need, let me know and I'll correct it.
Friday, November 21, 2008
I'm grinning at you, Patty...
...primarily for the comment you recently left to which your name, above, is linked, but, as of this morning, the grin increased to include this comment. You keep me on my toes, grrrrl! My initial intention, resulting from the initial grin, was to respond to you personally, but, lately, personal correspondence seems always to be trumped by something else. Then, you left the second comment and I decided...hmmm...good idea to respond to you here, since I'll also be able to cover something interesting that happened last night and ties in with your first comment.
    First, though, I have to say, which is the reason for the initial are determined to get me teaching, aren't you!!!! I'm fairly laughing about this! I come, as you may have read, from a sturdy line of teachers of a variety of types, including within my own generation and the generation that immediately succeeds mine. I have, myself, taught, formally and informally. My first teaching "job" occurred when I was in the 6th grade at Wettengel Elementary on Guam. [I note, with chagrin, that Wettengel no longer hosts a sixth grade class.] In the fall of that year Typhoon Karen ripped through the island. Business on Guam came to a standstill for some weeks, including school. When all was in readiness for the school year to continue, a huge number of teachers from The States had left the island. In our school, teachers for the lower grades were recruited from the sixth grade. I was one of those students. Anyway, I'm not sure I have a natural talent for teaching...although I've taught, formally and informally, professionally and avocationally, in many capacities. Bottom line, though, is that I can't imagine anything I'd not want to do, at this time, considering all that's going on, more than training someone to care for my mother in my absence, even though this was one of my essential tasks when my mother was recently in the hospital, the intermediary care home and the rehab facility. My guess is that we could probably afford to do this. However, it seems that, if I decide to take a respite (which is no longer as clear a choice as it was a few days ago), I may have stumbled across someone to do exactly what you are suggesting. Let me explain.
    Last night while my mother was napping I made a quick trip to Walmart to pick up Depends and a few other supplies. I was clearly dragging, it had been a "flying below the radar" day for Mom, thus it was a "flying above the radar" (if such a thing is possible) day for me. I decided to make a quick stop at the local Starbucks drive-through on my way home for a little instant energy. The barrista waiting on me asked me, almost before I'd brought my car to a full stop, "You're a caregiver, aren't you?"
    I was astonished. "Well, yes, I am! How did you know?" Had someone, I wondered, stamped "Caregiver In Flight" across the side of my truck when I wasn't looking? Was it possible that I was more than right about something to which I referred, some time ago, as "care-dar", that, in fact, this sense is much stronger than I ever imagined?
    The barrista laughed and said, "The Depends next to you."
    It was my turn to laugh. Sure enough, the eight packages of Depends I'd bought formed a highly visible stack in the passenger's seat. "That's a relief," I said, "I was thinking you were psychic!"
    We struck up a conversation. Turns out, she's a professional caregiver who recently moved here from California. The topics of our conversation, which was extensive, despite it's quickness, revealed that she had quite a bit of experience not only with elders in a variety of health states, including those in the "hospice" stages of lung cancer (a pretty common development for my mother's generation, which shouldn't surprise anyone, as theirs was the generation of cigarettes distributed in WWII ration packs). She's worked in care homes and for individuals; her complaints about Medicine revealed to me that she was used to dealing with the vagaries of medical professionals and their recommendations at the same level as me. As well, professional caregiving is her chosen profession and she's looking for this kind of work here either privately or within a facility. She surprised me by telling me that, here, it's not as easy to get work as a professional caregiver as one might think...she is considered "over qualified" for the facilities (which lowers my confidence in facilities even more) and hasn't yet established a private network. She asked me to pass her name and number around to people who might be looking for someone with her qualifications. I promised I would. It didn't occur to me until after I drove away that I might have some work for her...naturally...I truly don't think quickly when I'm involved in conversation. But, if I should decide to seek out respite, even for a couple of days, Patty, I'm going to talk to her about the possibility of me hiring her to spot me at whatever care facility I choose. There's much more I'll need to know about her, of course, but I have a sense that it wasn't coincidence that this person appeared out of nowhere on the very day when I was considering your proposal, Patty, and shaking my head about having to train someone while I'm caring for my mother. There will, of course, be some training involved, but not nearly the amount that would be required with a newbie...with this woman, I'm sure it would be a matter of acquainting her with my mother's eccentricities, requirements and, of course, her character; and, of course, acquainting my mother with her and seeing if they hit it off.
    The reason why, over the last 48 hours, I've been reconsidering the possibility of respite is that it appears as though we're turning corners in the development of my mother's physical reaction to her cancer rather quickly, now. I'm hoping that what's going on is simply a spate of those "Bad Cancer Days", but I need to wait certain developments out, at the moment:    Your other comment about how to evaluate the food my mother eats in relation to my mother's appetite, Patty, well, the reason I'm grinning about that is because I actually report both the food she eats and the food she doesn't over at The Dailies. I used to report all meals and snacks. I'm no longer quite so meticulous over there. I primarily report changes in her breakfast menu (since breakfast is almost always exactly the same from day to day), now, but I continue to delineate the contents of her dinner, sometimes listing ingredients if I think I might want to remember these. Most of the time I report amounts eaten as well as amounts not eaten, although the reporting of amounts not eaten is relatively new. Since that section of the journal is primarily a tick to my memory, it's not a problem for me to drop amounts, here and there, because just listing the ingredients reminds me of how much she usually eats; thus, when I list what she doesn't eat, it already exists in context for me.
    Quickly, since I'm coming up on time for Mom's nap, regarding the "more later" mention regarding pain, Mom had an episode last night (which was primarily responsible for a Bedside Evening) that likely was not related to her lung cancer directly. After she arose to a sitting position on the bed, she experienced hard, steady pain across her upper back about four to five inches below the tops of her shoulders. Although it wasn't what I would consider "incredible" and her breathing was not affected by it, it appeared, after a good half hour, that 500 mg of acetaminophen was not going to do the trick, so I decided to go for the morphine, as she was clearly in distress from the pain. I was going to, as our Hospice RN suggested on Tuesday, go ahead and administer the morphine according to the morphine manual and inform Hospice during the next business day, which would have been today. The syringe, though, had a tricky little top to it which disallowed me putting it into the bottle to draw out the medicine so I had to call Hospice, anyway, for directions on the mechanics of morphine administration. Turns out, the syringe attachment operates as the bottle top, once it is inserted into the neck of the bottle, and the syringe closes the top when not in use. Anyway, while I was consulting with the RN on call, Mom's pain vanished. Chances are it was probably caused by either a compression fracture of a vertebra or something just worked itself into an out of joint position while she slept then popped back in later.
    If I hadn't already hopped Mom up on acetaminophen I probably would have given her an ibuprofen in an attempt to head off the use of morphine. Thinking about this, later, reminded me that I'd been wondering if it might be time to consider ibuprofen instead of acetaminophen for hard, steady pain and, if so, might it also be better at reducing possible inflammation of her right lung from the life that tumor is leading inside it and allow her to breathe more easily overall. So, this "morning", when she complained of some fairly minor (at the time) lowernback pain (which has been common for her for a long time), I decided to give her 200 mg of ibuprofen at breakfast, instead of 325 mg of acetaminophen. It's probably too soon to tell, but during her 1st up time today her breathing has been somewhat easier, although she continued to be fairly tired, today, so I didn't try dialing her back to 4/lpm O2. Depending on how her evening goes, even though her initial ibuprofen has worn off and she may not need anything for pain during her second up period, if she is breathing easily and is more alert, tonight, I might try dialing her back and see how it goes.
    Anyway, Patty, I'm sure I've overwritten myself, here, in response to your always appreciated comments. And, it's time to see how easy it will be to shake Mom out of her nap. Thank you, Patty, and thanks to all of you, who continue to visit and comment even though my activities online have been lately circumscribed and I don't get around much, online, right now. No matter what any of you has to say, it is always a pleasant surprise and always perks me up to get a comment!

P.S.:  I've been trying to do a better job of editing when I initially publish, as I've notice I'm making quite a few mistakes, sometimes confusing ones. For those of you who subscribe to a feed on this journal, forgive my incessant going back and editing, of late...although my intentions are good I usually don't find the time to edit myself until several hours after I've initially published a post. THANK YOU FOR YOUR PATIENCE!
Thursday, November 20, 2008
She asked for another hour at 1230...
...her 12-hour-sleep-mark; all she has to do is ask, usually, unless she's been asleep for 14 hours and asks for another, and she gets it.
    Anyway, in the moments before I awaken her for the day I want to mention that we almost had another incredible pain episode but, this time, I caught it before the pain began. She had awakened from her nap and we'd walked her into the bathroom. At some point during the walk she dislodged her cannula. I'm usually watching her feet and hands, so I didn't notice. As soon as she was seated on the toilet I exited the bathroom, as I usually do, to secure paper underwear and a pad. When I returned, probably about a minute later, it was obvious she was in physical distress. She looked like she was in pain, although she said she wasn't, and was hunched waaaay over on the toilet. It didn't occur to me immediately to look at her nose but she heaved up, then back down, once, and then I noticed it: The cannula tubes were lodged aside and shooting O2 directly past her nose to the left. I corrected it immediately. Even though she swore, after several askings, that she wasn't in pain, it was taking her awhile to recover from the physical distress so I gave her 500 mg acetaminophen and some toast before dinner. She was fine within 15 minutes. It occurred to me, last night, that, since these episodes have begun, we've been using the same cannula. She's due for a change this week (typical Medicare regs; one cannula every two weeks unless one becomes clogged or damaged) and I ordered new ones but I notice the supply company guy didn't leave any today, so I'll need to go pick them up later this afternoon when I run errands. Anyway, every once in awhile we get a wonky cannula. Usually it's evident immediately, but it could be that this cannula is a bit less wonky that usual and is only displaying its construction problems when my mother wipes at her nose (with our without Kleenex). I've got a 1600 (with narrower tubes) that I put on her last night when this occurred to me. We didn't have any more dislodging episodes but that doesn't mean anything. However, at least, this one is staying put, which is good. If I can't get to the supply company before it closes, today (which is possible), this cannula will serve us well at least until tomorrow morning, I think.
    I've begun to note over at the The Dailies, starting a few days ago, I think, when Mom doesn't eat all the food I serve her at her meals. I've been in the habit, since this started a few weeks ago, of serving her a little less. She is continuing, though, to occasionally leave food on the plate. Last night she actually left some of her dessert on her plate. Seems like a good time to begin to take a casual every-meal-food-not-eaten inventory. This usually happens at dinner, although we've had one breakfast where she didn't eat everything.
    Mom's asked for hour is almost up. I'm hearing a reconnaissance cough as I write. Better mobilize. Last night was "Royals" night on PBS so we put off watching the American Girl movies. That's probably what we'll do today.
Wednesday, November 19, 2008
Oh, remind me about...
..."You need to chill".
Yes. The Hospice Social Worker visited today...
...and I got a chance to talk to him, extensively, about respite possibilities and my misgivings. The discussion was extremely helpful.
    First of all, he was able to give me specific information about and insight into to a number of local respite facilities that I should check out. He was especially in tune with my desire for a smaller, home-like facility, even though I hadn't gotten a chance to mention this. As well, he was careful to review facilities that are close to home.
    Secondly, his advice about how to approach a respite facility visit was first rate and advice I needed to hear. He recommended that I take my long list of concerns and whittle it down to "three or so"; those most important. Ask open-ended questions about these areas, instead of initially laying down my law. For instance, regarding my concern about diet: Ask what provisions can be made for my mother's peculiar diabetic profile, which is extremely flexible but can easily get out of hand.
    Thirdly, the overall tone he suggested for my visits encouraged me to think in terms of soliciting the facility's help in caring for my mother, rather than laying down the law about how she should be handled.
    He reminded me, of which, frankly, I needed to be reminded, that many of the problems I had with respite care last time were piggybacking on problems that had already developed through the hospital; and, as well, many of the problems I had with the rehab facility were piggybacking on problems created by the hospital and then nurtured through the respite facility. He pointed out that my mother, at this time, is in a state of health profile stability (more or less). She does not have any pressure bruises, for instance. She will not be going into whatever facility I choose dehydrated, constipated, over-sugared, over or inappropriately medicated or recuperating from a debilitating bout of something-er-other (I hope), etc. Thus, the chance that meticulous oversight will be needed by me is much lower than previously. As well, she and I both have time to prepare for the possibility of such care. This is different, too. He added that, as far as oversight is concerned, Hospice can and will work with me on this. Hallelujah!
    Interesting, too: I mentioned one of the points I wrote about in the immediately previous post, that I thought it would probably be a good idea if I visited the facility nightly in order to eat dinner with her and spend some time rubbing down her legs, maybe reading out loud to her. I also mentioned that one of my plans for respite time was to take advantage of her absence and do things that are impossible while she is here, like having the carpet cleaned (she is very sensitive, now, to the chemicals used and a five day airing out of the house should alleviate this); going through all the boxes of paperwork we transferred from the shed to our house in the spring just prior to her pneumonia in order to go through all this stuff "together" (which is not a good idea, anymore)...although he didn't discourage me, he suggested that I should not try to set caregiver duty limits on the time I take for respite. He suggested, for instance, that I feel free to indulge in an out-of-town visit, if I wished, etc. It's not that I hadn't thought of this, it's just that I continually feel under the gun to do certain things that aren't getting done, even when the doing of such things doesn't quite fit into Mom's and my lives,, I tend to think of respite as a time to approach the possibility of putting things in order, as well as doing things I enjoy without interruption...reading a book from cover to cover in one sitting, for instance...ahhh, those were the days!
    Sidebar: The truth is, time when my mother is asleep that I could be, for instance, going through boxes, is often spent considering and recording our companionship/caregiving experience here in my journals. A second truth is, if I surrendered this to other "putting one's house in order" duties, I'd, frankly, go crazy. This work that I do here online in my journals is what keeps me from blowing a gasket. It is as necessary to me as fluid intake monitoring is to my mother. It is, in fact, more than a safety valve. It allows me to add, in my own eccentric way, meaning and purpose to this journey of my mother's and mine. It allows me to "lose" myself in this experience in a manner that is both appropriate and necessary to me.
    So, anyway, the upshot is that I'm feeling better about the possibility of respite. It may not come as quickly as I was planning, and I doubt that I'll be taking advantage of the opportunity as often as Hospice says I can, but, I feel better knowing that it can probably be done.
    One other preparation I intend: I will be talking to Mom about the possibility of this happening, what it will mean for her, what it will mean for me, how she feels about it, any concerns that she has about being in a facility for up to five days with much less contact with me than she normally has, you know the drill. I've already opened the subject with her. From discussion to discussion, of course, I don't expect her to remember much, if anything, consciously. But, I've come to have great faith in her subconscious mind, which continues to operate reliably on her behalf. In some ways, in fact, I sometimes feel that it has become stronger than before as it has taken up the slack for her conscious mind.
    So. Anyway. Enough. I've got to prepare for dinner and Mom's awakening from her nap. Tonight, I think, we'll be watching American Girl movies. Night before last we watched the one that hit the theaters earlier in the year about the depression. My mother was thrilled with it. It brought back many, many memories for her of being a child during the depression, her family taking in boarders, the attitude that anyone could spend time in Hobo Jungle so you needed to be careful about how you viewed hobos, etc. At one point my mother even said, "You know, my dad had to leave home looking for work, more than once." I wanted to ask her if she knew whether he ever spent time in the hobo culture, but then the scene in which Kit wears a dress made of chicken feed sacks appeared on the screen and she was off on another memory...thus, I rented all the movies available, even though they aren't specific to my mother being a child during those other three periods. I know she'll find them fascinating, anyway.
    Gotta go.
Another Hospice RN visit today...
...and I want to record the highlights before some episodic wind blows them out of my conscious mind (which has been happening a lot, lately) [This post started 11/18/08]. Some of the detail is sketched over at The Dailies post for today [11/18/08], which won't publish until 2359 this evening [the evening of 11/18/08]. I'll fill in the exact linking url later. Thus, I'll try not to repeat myself but, well, I'll probably fail at that endeavor. Here are the highlights:    So, anyway, that's where I am, right now. Optimistic yesterday, fearful today. And, it's just about time to awaken my mother. The Hospice Social Worker is due for an appointment later. Maybe I'll discuss this with him. Maybe I won't. I'm not sure.
    You know, bottom line is, I'm trying to avoid circumstances that would lead me to consider a law suit. I don't like the idea that the medical and professional care industries are amenable to change only through law suits, not to mention the fact that I simply don't want my mother or me to find ourselves in the position of considering a law suit, because that presupposes bad care and all the dangers that accompany bad care. Through Hospice I am now able to relax about my mother's medical care, after six years. Unfortunately, and, believe me, Hospice is not to blame for this, I am not able to relax about the possibility of in-facility professional care for my mother.
    What about having a volunteer a few hours a day to sub for me so I could "get out"? You know what? I don't want to relax by "getting out". I want to relax by staying in, doing things I want to do here at home without being interrupted by the requirements of my mother's care. In this small, snug home, I don't see that happening, even if a volunteer were to take over care here and there for a few hours. I'd have to get out in order to get away from caregiving. And, you know, I already know, that wouldn't work for me. I relax best at home. It's a part of my character. Something tells me, ignoring my character would be one of the most stressful actions I could take.
    So, you know, consider this post in the spirit in which it is written: Venting.
    Shaking head. Closing eyes.

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