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.
Just to let you know...
...ai, yi, yi! Yesterday went well with the morphine; it seemed as though Hospice and I had gotten the titration right for Mom. Today, all pain and air hunger hell broke loose and it took from noon to about 1645 to address them successfully, which included:
- A total of 1.0 mL morphine over a four hour period;
- 500 mg acetaminophen to stop it, another 500, about 15 minutes ago, to keep on top of it;
- Several, I'm not sure how many, calls to Hospice to get an okay for each dose, until I was finally told I could give her .25 mL per hour without calling Hospice until the pain and air hunger disappeared, for awhile any;
- A visit from the non-emergent paramedics to pick her up off the floor and put her back in bed. That's right, folks, at one point her pain was so bad she was doubled over and even though I was holding her on the bed with my arms and my body, the force of the pain and her doubling slid her off the bed. I made her as comfortable on the floor as possible with one of our handy-dandy wedged...her pain stopped within about 15 minutes, I covered her with a blanket, the Hospice nurse showed up, examined her, then the paramedics were called;
- I am keeping a close vigil on her now, of course. She has had nothing to eat, little to drink, has been out of it all day, cannot hold herself up in a sitting position without great difficulty which indicates she is incredibly weak, right now, but her speech is good, her lungs sounded surprisingly clear to the nurse, her blood pressure was good (120/70), her breaths per minute remain good at of 1815(20), two hours after her last dose of morphine but, of course, I'll be checking them assiduously in order to try to get her next dose in just before she needs it;
- I kind of, sort of, expect that the night will continue much like today so I'll be dragging my bedding into her room to sleep with her tonight;
- I have no idea what lays in store for us at this point.
I'm going to try to hold off until at least 1915 for her next dose of morphine but, well, we'll see. I'm hoping I can get her on a fairly steady regimen throughout the night of acetaminophen every four hours and morphine every three to four hours.
In the meantime, I won't be updating the companion journals. I think the one over at The Dailies is due to publish at 2359 tonight but it will be fields with question marks and, I think, one entry in the Medication Changes section. Otherwise, well, you know what I'll be doing.
Not sure when I'll update this again. Not sure, really, where we are with all this, yet.
I think I'll go check on the Mom.
Twenty Breaths per Minute and Holding
That's right. I checked her while she was sleeping before I ran my errand and when I returned. The same both times. We are also now the proud lessees of a "high flow" concentrator with all it's high flow paraphernalia, including a high flow cannula, a high flow delivery tube (which comes with the built in cannula), and a high flow humidifier attachment (which partially explains why the humidifier attached to the other tank was spitting; the other part of the explanation is that I overfilled the bottle out of ignorance). I find it interesting that, for the purposes of equipment, 6/lpm is considered "high flow", even though it's cited officially as being the upper limit of "low flow".
She just awoke, but not yet for the day. I think she may just have been repositioning herself and started to cough. I told her I had planned to let her go until "four or four-thirty". She recommended that I wait until four-thirty. I agreed, since 3 hours had been cut out of her usual night sleep period and she's had "a hectic morning".
"I sure did, didn't I!?!" she said. "What would you do for excitement if I wasn't around?"
The morphine may be wearing off, I'm not sure, but she reported that she isn't having any difficulty breathing, although she sounds like she has a cold, exactly the way she sounded this morning, her voice blocked by the lack of nasal resonance. She seemed a little disoriented, but that's common when she awakens and wants to go back to sleep. It's also common when she's not feeling great and she's probably still fighting a cold or something.
From something one of the three Hospice RN's with whom I consulted today said, I gather they're betting that all of this is strictly "cancer related". My attitude is, considering that Mom has lung cancer, everything in regard to her health is, now, "cancer related". She didn't used to get colds, for instance; she does, now, regularly. Still, though, I make a distinction between direct relationships to cancer, such as, for instance, the fact that all air flow, now, appears to be blocked in her right lung per the visiting RNs assessment, and indirect relationships to her cancer, such as the difference between how she feels and operates when she has no cold and when she has a cold. I figure, if you've got lung cancer and a cold, it's a good idea to consider treating the cold along with the cancer, instead of treating the cold as cancer.
I want to mention in regard to Mom's high BGs of late: When I ran through Mom's numbers for the visiting RN for the last week plus, to the point where her BGs were normal (for Mom), the RN said that, in the presence of infection, she usually sees BGs much higher than that. She confirmed my observation of the recalcitrance of high BGs related to infection, though, when I told her of the recent day when both numbers were in the low 200s, the morning number having been taken a good 15 hours after her last meal in which refined carbohydrates were practically non-existent and I'd already stopped the nightly prune juice by a day or so; on that day I also fed her four 10 mg doses of glipzide, knowing that, officially, more than 20 mg per day is reported to have no effect but, in my mother's case, 30 mgs does have an enhanced effect but an extra 10, to 40, usually doesn't seem to make a difference. I'm not sure whether my mother's profile would, in the presence of infection, necessarily boost her BGs higher than they already are. During her first bout of pneumonia on Hospice, when I was unaware that the presence of infection affects BGs (I know, how have I been tending to my mother's sweet blood for so long without knowing this...apparently it's fairly common knowledge...oh well, the lack of it didn't hurt either of us), the on call RN asked about her BGs and said that the high run at that time, which rarely hit 200 and ran in the 170s in the morning and the high 180s or low 190s at night, qualified as BGs probably affected by infection. I guess a lot of health calls are seat of the pants and depend on who's seat is in the pants. This doesn't surprise me, not with my experience as Mom's medical advocate. It's not easy to negotiate this wavering of information but, you know, overall, this is why Medicine is considered an art as well as a science. I not only have been living with this dictum, I can continue to live with it. So, it appears, can Mom, at least for the time being.
As I was running the errand, which turned out to be for naught, I reflected on the fact that I've been posting double-time lately. I know this is happening because there is so much to report that I want to catalog in my online memory. During times like these when things are in quick flux posting helps settle me down as I review, too. I realized, though, during my reflection, that despite the fact that I've been heard to "say", on many occasions, that I primarily write here for myself, I write for others, as well. I can't tell you how many times, over the last several years of caregiving, I would have loved to have had access to a rambling, searchable "place" that described an actual person with an observable character going through the moments and the thoughts and the actions of situations similar to the ones I've confronted. "Watching" someone step, and step again, and misstep, and catch the misstep and back up, then go forward to the next step, listening to their monologues and dialogues, internal and external, as they negotiated their way through another event, or, even, the fallowing fields between events, would have been very helpful for me. Since I couldn't find that "out there", well, I guess I decided to create it.
So that's my full excuse for doing this. Not that I need one. But, you know, it just struck me, today...
Maybe I can rest my eyes for about a half hour before I pull Mom into the awake part of her day.
Just an Idle Question, then an Update
Idle Question: Why is it, when a man wants information and works diligently to get it and make sure everyone with whom he is dealing on any particular issue is on the same page with information, he's considered smart and perspicacious, but a woman doing the same thing is considered to be a control freak? Even women make this assumption about other women, it seems. I might elaborate on why I'm questioning this, later. Then again, when I calm down a bit, I may not. Still, it's a legitimate question.
Update: My mother awoke this morning a bit before 0900 with a breathing crisis. In hindsight, this probably happened because:
- Her concentrator only goes up to 5/lpm and she probably should have been at 6/lpm, at least through this current period.
This problem is being solved at 1300 today when a concentrator capable of handling loads above 5/lpm is being delivered.
- She probably has needed to have the humidifier attached to her concentrator, which hasn't been happening, for reasons explained previously. Circumstances have, obviously, changed, which requires a change in O2 delivery methodology.
I've taken care of that problem this morning and the humidifier is now attached.
- She probably needed morphine again this morning, although I didn't think this was it; I thought she was having a crisis that spelled "d-e-f-i-n-i-t-e-l-y p-n-e-u-m-o-n-i-a". One of the Hospice RNs guided me through giving it to her over 45 minute period, from 0945 through 1030. We discovered that she can not only tolerate .25 mL at a clip, but probably needs that, at least right now. If necessary, I can give her this dose every four hours. I am to cut back if it makes her sleepy (other than at her usual sleep times), loopy or rubbery (pertaining to her body and her ability to move). As it turns out, about an hour after she received .25 mL, I had her in the bathroom changing out her underwear and cleaning her, which including her transferring and standing for a period of up to about four minutes and turning this way and that. She did fine.
A few miscellaneous details: Her Blood Oxygen was at 93%, which is good, at 5/lpm when the visiting RN took it; axillary temp was 96.0, normal for my mother; Pulse at 95, which is a little high for my mother, but it's been an exciting morning. Blood pressure was not taken and I'm fine with this.
She is now sleeping, again. I'm going in for my shower before the oxygen company arrives. I have one errand to run after delivery of the concentrator and will do this as my mother continues to sleep. Otherwise, I think we're good for the day.
I always forget, when Mom's not feeling good...
...that recuperating, for her, now, involves minor relapses. It always surprises me, as it did tonight when she awoke from her nap. Her feet were swelling, again. Her blood glucose was back up to 189, for no dietary or medication reason. She was tired, lethargic, preferring the chair to walking. In addition, it was hard to ease her breathlessness, even at 6/lpm O2, so, finally, tonight, I decided to marshal Morpheus in a Bottle...hmmm...I wonder if stories about genies in bottles are metaphors for morphine or other narcotic substances and their related experiences.
I shot the lowest dose quoted to me under her tongue: .125 mg. I also combined the dose with a leisurely shoulder and arm massage, enticing her to relax her arms and upper body. She'd been so tense in her effort to breathe that she'd been propping herself up with her right arm against one rocker arm and keeping herself from falling over the left rocker arm by bracing herself against it with her left arm. She looked terribly uncomfortable and her back and arms were as tight as a guitar string wound an octave too high.
Did the morphine work? It's hard to say. I can report that it did not affect her ability to stand or talk or conduct herself as she usually does. It didn't nauseate her. She didn't become loopy. She was already tired when I gave it to her. I don't think it increased her tiredness. When we headed into the bathroom for night prep she was no more tired than she's been many a night.
I didn't think to count her breaths per minute before giving her the morphine. About thirty minutes after the first dose (I gave her another an hour and five minutes later for maintenance purposes, using the "for pain" instructions) I engaged her in conversation to make determine whether she was as lucid as usual. She was lucid enough to be irritated with me for stopping the progress of a new movie she was watching, a "Jesus" movie, one of her favorite types. At that time I also counted her breaths per minute: 32. Higher than the Hospice RN count, at 28, on Thursday afternoon. About every 15 minutes I'd count again and continued getting 32. A couple of minutes ago, though, at 0147, I counted them over the monitor and got 28. At the very least, about 20 minutes into the first dose she reported that she no longer felt breathless. Every time I'd asked her previous to dosing her with morphine (and, it was hard not to ask her, her labor to breathe was very obvious tonight) she'd answer that she was "a little" breathless. We'd adjust her position or I'd prompt her to blow her nose, but nothing seemed to relieve her effort.
I'm not sure if morphine is expected to lower breaths per minute or if it's just supposed allow the recipient to feel comfortable breathing, regardless of one's blood oxygen level.
Twice in the hour and a half she was on morphine before she set her head on her pillow, she mentioned, suddenly and spontaneously, that she didn't feel good. Both times I asked her if she felt nauseated (one of the possible side effects) or dizzy or heavy limbed or nervous about how she was feeling (my way of asking her if she's feeling agitated, which she doesn't interpret very well and to which she always says "no", I think because she connects the word "agitated" with someone who's twitching or displaying excessive jerky motions. I also asked her if her skin "feels weird", an attempt to elaborate on the "agitated" question. She responded in the negative to all my questions. Both times, as well, within less than two minutes when I asked her, in follow up, if she still felt "bad", she looked at me as though I no reason to ask her this and declared, "I feel fine!"
So, I guess the morphine worked. I'm wondering if she needed it because she was relapsing in her battle with her infection. I'm hoping I'll be able to tell when she awakens for the first part of her day tomorrow.
Right after I gave her the first dose of morphine I felt a wave of relief and let down with a few tears. It was rather like having gone through an initiation. As each five minute increment passed beyond the dose I further relaxed and felt more comfortable with and in control of what I was doing, even though I'm not sure it actually accomplished much of anything. At the very least, my mother did not turn into a Morphine Beast, which I was, apparently, expecting. Don't ask me what nature I was expecting this Morphine Beast to display...I have no idea, which, I guess, is often the nature of fear, isn't it? It's not about what you're imagining, it's about what you can't imagine; it's what fills in the gaps when you are missing information. Nothing happened to her at all except that began reporting that she was no longer breathless. After about 45 minutes I noticed I still had her on 6/lpm O2. I dialed her back to 5/lpm and waited. No change. She did fine. She didn't breathe any slower, but she didn't breathe any faster. Because she is still obviously fighting the good infection fight, I didn't dial her back to 4/lpm.
I'm going to call Hospice tomorrow and review instructions for its use for air hunger. All my instructions applied to using it for pain relief. It seems to me the Hospice RN may have included informal instructions when we talked about morphine use for air hunger on Tuesday but, if she did, I didn't write them down and I don't remember them. I do remember her telling me if I had any questions or difficulty to "call Hospice". So, I will. I just want to make sure all our possible options for use and dosage are displayed within easy reach for us.
I'm continuing to listen to her on the monitor. It doesn't sound like she's resting particularly easy, but, then, throughout the last week or so this hasn't been unusual. I think I'll shut down the house and peak in her room on my way to bed. Her eyes were still open when I looked in on her about 45 minutes ago. I hope they're closed, now, even if she's a little restless.
"Well, thank the gods my mother's immune system is still kicking in...
...that's all I have to say!" That's what I told our Hospice RN when he called, much later in the afternoon, today, after I had talked to him this morning about the possibility of pneumonia.
When Mom awoke, today, although she was her usual drowsy, not-ready-for-prime-time self, she looked better, sounded better and felt better by several tens of percents than she did yesterday. The swelling in her feet hadn't completely disappeared but it's obvious it's on it's way out and her feet are no longer white (they were blanching, but just barely), but pink. Her blood glucose had dropped from last night by 50 points. Her speech was fine. She was coughing and stuffy, as has been usual over the last week, but her eyes were bright, the whites were clear, her skin was peachy and she wasn't gasping for breath from having sat up in bed. If you've been following Life After Death Sentencing you know that movement has been very occasional and very iffy for several days. Today she not only walked into the bathroom, she insisted on walking into the dinette, as well, and into the living room after breakfast. She was a little slow but not at all unsure of herself. When she rose from the bed her leg muscles enlisted so much force that she nearly fell against me (I always spot her by locking my forearms with hers when she rises from anywhere).
All this occurred before our Hospice RN called back. When I spoke to him this morning he listed two options, telling me he favored the first:
- Wait to decide on treatment for absolute evidence of infection, i.e., coughing up yellow or green sputum, definite fever, etc.
- Treat prophylactically. [I've got to remember that word...the one I use instead of "prophylactic" is "preemptive". I suppose a case could be made for my word, but it's not the favored word for Hospice. I'm not sure why I stick with it; maybe because of its connection to war and my sense that infections are "fought".]
Even so, I added, I understood his position and would bow to the doctor's preference. At this point, I continued, I had no problem waiting because if her condition deteriorated, Hospice was only a phone call away and it would probably happen soon.
Then my mother awoke and appears to be on the mend. Thus, when our Hospice RN called back this afternoon, I reported the good news and asked what the doctor had said (she'd been in favor of waiting).
I'm sure my mother has been battling some sort of infection, probably for about a week. Chances are, it was viral, not bacterial, thus antibiotics wouldn't have helped, anyway. I believe she probably had her crisis battle yesterday, which is why she felt so bad and all her symptoms were displaying their full colors. And, she won. Good for her.
A lesson I'm taking from this episode: She is capable of displaying exactly the same symptoms when fighting a virus as she does when fighting bacteria. This is a good thing to know. It also makes diagnosing her health events a bit more iffy, since she could, conceivably, have a dangerous crisis due to a viral infection and I, at least, wouldn't be able to tell the difference between that and an episode of pneumonia. The only aspect of her last bout of pneumonia, really, that convinced me it really was pneumonia is that the antibiotics began healing her within 12 hours. And, of course, a viral infection lays a very inviting stage for the entrance of pneumonia.
But, we're good, right now. I'm curious to see what her blood glucose will be this evening, of course. This will tell me where she is in her reversal. But, even if its high, I'm optimistic that she's on the mend.
As usual, her appetite rarely lagged. When it did, a Bedside Evening took place and, often, eating a mere piece of toast prompted her appetite to demand "a little something else".
She's napping, now. Well, you know, what else would she be doing? I can hear her breathing through the monitor. It's even and unfettered. I've checked in on her a couple of times. She's relaxed and snugged well down in her covers. The Little Girl was sleeping with her, earlier, but left to sleep out here behind me. That's a good sign. The Little Girl's sleep habits are an excellent barometer of how Mom is feeling. If she sleeps elsewhere, I can be sure she's not worried about The Mom.
Tonight, neither am I.
Probably Pneumonia x 3
As I write this I'm about nine and a half hours into considering that my mother probably has pneumonia again. I just checked all my notes in my Pneumonia x 2 and Pneumonia x 3? posts, plus the two follow-up posts to that one and, all things considered, I'm sure that's what's happening. When the last one, her speech beginning to evidence "tongue thickening" although not at a really prominent point, yet, kicked in last night about an hour and a half before she retired it finally occurred to me that it might be pneumonia. As usual, this sneaked up on me. I've been noticing and treating (unsuccessfully) all her usual symptoms as separate, "unrelated" events, as I usually do. I'm beyond self-recrimination for not putting "things" together earlier, so, I'm just tsking, shaking my head, smiling a bit and wagging my finger at our familiar, ever camouflaged friend, partly in admiration of the wily devil that it is.
Once Mom's speech started thickening and I put two and two together and figured out what is probably happening, I initiated our usual do-you-want-antibiotics conversation (I used the word "antibiotics", in this case, since I've learned she has a completely different concept of what "treatment" means and doesn't consider antibiotics "treatment" since it doesn't involve x-rays, needles, poking and prodding, etc.) if Hospice determines this is likely pneumonia and offers preemptive treatment. This time it was kind of a funny little conversation, partly because she was a bit hazy and her speech was a little hard to come by, partly because she was annoyed that I'd broken into our watching of one of our shared favorite movies, Love, Actually (we've delegated it to our Christmas Movie line-up), partly because she was so relaxed and feeling so good that she was indignant that I was talking about the possibility of ill-health. Here's pretty much how it went:
Mom (after I stopped the movie): Why did you do that?!?
Me: I think you might be developing pneumonia, Mom, and, before I call Hospice, I need to check with you on whether you want antibiotics if they offer them.
Mom (fairly snorting her denial, although she rarely snorts so it would be a misnomer to call it that): Oh...cold...
Me: Are you cold? (I thought, Hmmm...maybe I'd better take her temperature, I haven't taken it for awhile)
Mom: Noooo...(disgust apparent)...ch...ch...
Me: (I knew what she was trying to get out...when she's annoyed with me she calls me "child", not in a nice way) Child, Mom, I'm the child (I was grinning naughtily).
Mom: That's right! Don't forget! (In order to get over her thick tongue she was starting to form very short sentences...which is good, at least I'll be able to understand her immediately.)
Me: Are you saying you think it's just a cold?
Me: Well, you may be right. Last time that's all it was. But, you know, every time I suspect pneumonia, I have to ask...
Mom: (back in control of her speech) Oh, I know! Ask!
Me: (chuckling)If Hospice thinks it's pneumonia and they offer preemptive antibiotics...
Mom: They won't.
Me: Maybe not. But if they do...
Mom: Yesss...yuh...sss...(she seems to trip over "s", in particular, I noted with interest, when her speech thickens)
Me: So, that's a 'Yes', I want antibiotics, blah, blah, blah..."
Mom: (practically disgusted, now) Oh, good...nuh...
Me: (grinning) Excuse me, Miss, would that be 'good-NESS' or 'good-GOD'?
Mom: (smirking) What do you think?!? (full speech command on that one)
Me: Okay, so, would it be fair to say...
Mom rolled her eyes and sighed
Me: That you consider your quality of life good enough so that you want to continue for awhile?
Mom: (faster than a speeding bullet, and just as loud) Whaddoyouthink?!?!?!?
Me: (laughing) I'm sorry...no, I'm not, I have to ask you, Mom. Okay. I've got it.
Later in the evening, while we were in the bathroom for night-sleep-prep, her eyes brightened with excitement as she offered the following suggestion, haltingly, of course, but clearly enough so that I understood it: "Mother and Dad would be tickled pink if we dropped in on them Chris...ssss...," she waved her hand to indicate that I knew what she was trying to get out, "Eve."
"Yes, they would! What a great idea! Let's plan on that!"
She started to form a word, dropped it, which led me to believe the word was probably "yes", then said, "tomorrow..."
"Tomorrow's not Christmas Eve, Mom..."
She looked genuinely surprised.
"That's in a little less than three weeks..."
"Oh, my," she fairly shouted, "We'd better...plan..."
"Yep. Let's plan on addressing your cold, first, though, then you'll have more energy for the visit."
"Yes, I believe, is the word you're looking for."
Anyway, I called Hospice at 0930 and they're in a meeting until 1030. Since it's not that urgent and Mom's sleeping peacefully I'm waiting out the time. For my own memory, here are the symptoms, approximate times that they've appeared and development, if applicable:
- Unusually and intractably high Blood Glucose levels since 11/26/08;
- Mild, fairly intractable fluid retention since 11/28/08 or so;
- Daily reporting, sometimes twice to three times a day, since 11/30/08, of feeling "bad all over", although rarely any pain acknowledged, so she's been taking, willingly, sometimes asking for it, which is unusual for her, lots of acetaminophen and ibuprofen, on average 1,000 mg acetaminophen a day or 600 mg ibpurofen for day or a half-mix of the two; yesterday, though, after one in the morning, she refused any more, saying, "It doesn't seem to be helping."
- Alarming intractable (meaning furosemide has helped little to not at all) feet, leg, belly and face swelling since 12/1/08;
- Hospice RN reported "wheezing all over" throughout her lungs on 12/2/08;
- Intermittent, laborious dry hacking for about a day and a half;
- Casual report yesterday morning and last night of feeling like she has a cold;
- Beginning of thick tongued speech since about midnight, last night;
- Low grade (for Mom: 98.4; her normal temp runs around 97.6) fever at 0100 this morning, a half hour before she went to bed.
Oh, yeah. We decorated our trees (we have two 32-inchers) yesterday, all afternoon and all evening, yesterday. Mom thinks we have too many decorations on them. However, I also got tree toppers for them this year and she's very pleased with those.
Later. Of course.
Despite my revelation night before last about who my mother is and how I need to use this as I continue as her companion and caregiver, when I retired that night I wondered if this was going to be an emotional burp that would be forgotten in the unadorned reality of the days to come. I hoped not, but made peace with the possibility that it might gather dust under the layers of daily detail. I slept on this moment of advance forgiveness.
Yesterday, visiting with the Hospice RN, as I watched my mother work to contain her desire to converse while the nurse took a few vitals, she suddenly appeared, That Girl, the one in the picture (link in the title to this post), eyes twinkling, enjoying the attention, making easy of her situation (and, why shouldn't she, there's certainly no benefit to making hard of it, for her, anyway, considering her character), ready to prod either the RN or me with a snappy comeback once the conversation continued.
Then, last night, during night-sleep prep, I left Mom alone in the bathroom for about two minutes in order to take the garbage to the curb. This may sound like an odd lapse, but it isn't. Mr. Man, one of our cats, has become her constant bathroom companion. He is also the cat who works diligently to escape the house every time I approach the door. I try to plan my goings out when he is either obliviously asleep or when he is in the bathroom with my mother. I always explain to my mother, prior to leaving the two together, why I am taking advantage of the moment and that I'll return "in a flash", thus, she is to stay seated, relax and "do nothing". She usually cooperates.
It probably took me less than two minutes to move our garbage cans to the curb. As I was trotting back to the house I had a sudden vision of my mother deciding to undress the upper half of her body, thus taking out her cannula, which lays over her clothes, in order to remove her blousing. My trot turned to a gallop. Sure enough, she was sitting on the toilet, completely naked, the cannula having been tossed onto the seat of the wheelchair with her sweater and bra. She wasn't desperate for breath, yet, so I figured I returned immediately after the act. I replaced the cannula and started an autonomic upbraid. "Mom," I scolded, "you cannot go for even a minute without your oxygen, anymore. You have to be very careful of that cannula. If you remember nothing else, remember this: Merrily taking off that cannula spells death for you, within a very few minutes." I was going to continue, in order to attempt to make an impression, but I noticed that she was glaring back at me like an imp caught in a deliberate act. That Girl. There she was, again.
"I know, I know," clearly and unappreciatively exasperated. "You keep telling me that! One of these days, I'm going to stop breathing anyway, you know!"
Brought me to a shocked halt. I laughed, I couldn't help it, at That Girl; actually, I think I may have been laughing with That Girl, laughing in the face of Death. Not only, I realized, is she fully aware that she will be dying one of these days, but her attitude seems to be, "Bring it on, see what I care, if You (addressing Death) have a right to fiddle with me, I have a right to live any way I want!" Definitely a That Girl attitude.
I reached across what used to be the divide between her and me and patted the cannula, then her cheek. "Well, you're right about that," I said. "I have an interest in keeping you around as long as possible, though. Please know, Mom, I won't try to keep you here when you're ready to go. That's why I ask you, when I'm unsure. But, you know, don't you think it makes sense, right now, anyway, since it doesn't seem like you're ready to die yet..."
"Oh, no, you're right about that," she interrupted. "Not tonight."
"...well, then, if, at any time, what's standing between you and Death is just cannula placement, do you mind if I put it back in your nose?"
"I can do that."
"Okay. I'll keep an eye on it and let you know it when you need to put it back in."
She rolled her eyes. "Oh, I have no doubt about that!"
So, I guess I needn't worry. That Girl knows now, I think, that I've seen and acknowledged her. She knows I'm on her side and will do everything I can to nurture That Girl Who Is until she becomes That Girl Who Was and, depending on the fundamental nature of the universe, Continues to Be.
After these incidents I had one more tiny, interpretive revelation: Regardless of what the experts might have to say about the meaning of stalking dreams, and, of course, I'd made a mental note to check, I've decided on my personal interpretation: The stalker was That Girl. That's why her presence was "benign and benevolent". She was working to turn my head in her direction and acknowledge her so that I would have the correct tool to do my best to honor and acknowledge my mother. Mission accomplished, That Girl. Thank you for your insistence. No need for me to check with the experts. Message received and currently being implemented. Over and onward.
PTP (Purely Technical Post)
Over at The Dailies I just posted a rundown of what is contained in our Hospice Comfort Pack, as explained to me by our visiting Hospice RN yesterday. The immediately previous link will take you to it, if you're interested. Please note, as I also mention in the post: The explanations are not extensive. I wasn't looking for a PDA explanation...merely a thumbnail sketch of why we have them and how we might use them. The RN underlined that before using any of them, at least for the first time, I should always contact Hospice for approval and direction, and, of course, I will.
Fairly good day, yesterday, for Mom, although we continue to have a problem with edema, even after the 10 mg furosemide I gave her night before last. I talk about it in yesterday's Dailies post. I also discuss my concern over her continuing fairly high BGs in that post. I don't consider either of these huge problems, though, so, for the time being, I'm following my instincts on how to address them and not treating them as emergencies in need of immediate Hospice RN consultation.
I've been corresponding with Dethmama of Dethmana Chronicles, lately, because I am so impressed with her stories about her experiences as a Hospice Nurse. I like that her writing is simultaneously irreverent and dignified and that she writes to our dirty curiosity about death, rather than our clean, mannerly curiosity. Although the death and pre-death stories published in books such as Final Gifts and Final Journeys are certainly explicit, when reading both I got the feeling of being offered these stories after they had been dusted with a crisp, monogrammed linen handkerchief. Not so Dethmama's stories. She is just as apt to describe a startlingly provocative after-death visit with a survivor as she is to divulge the stark detail of how dysfunction can run riot through the next-of-kin's reaction to the death of a loved one or how the approach of death can unhinge a patient. Anyway, during our recent correspondence she mentioned a blog to me, The Good Death that isn't specifically about Hospice but is about death, in all its aspects. I've scanned a little of it. The author is following her investigative instincts regarding communication and death but the blog is wide ranging, including political information and commentary about death in our society as well as pop culture references, counsel and suggestion and miscellaneous musing about how our society, in general, and people (and animals) she knows, in particular, think about death and prepare for death. Despite its peripheral connection to Hospice, I think I'll include it over there in the Honorable Hospice Blogs section and retitle the section "Honorable Hospice & Death Blogs".
We had yet another substitute Hospice RN, today...
...and I finally received the information I needed about using morphine for air hunger. I get it, now. In fact, this RN (yet another excellent RN; our Hospice company seems to staff only excellent RNs) put it to me like this:
- Chances are, I will never be using morphine on my mother for pain. It is in our kit specifically for air hunger. It can and is used for pain on Hospice, but my mother's profile shows that pain she experiences is better addressed with other analgesics. As well, considering how long she's been harboring her lung cancer with no pain, the likelihood is good that this will continue. Thus, when my mother has pain from the labor required to breathe when her cannula is dislodged, the pain is separate from the air hunger. If the air hunger can be addressed by repositioning the cannula, great. The pain, apparently, in my mother's case, can be addressed with analgesics.
- The kind of air hunger that morphine addresses well is a phenomenon that respiratory patients, especially those who are not going to recover, usually "end up" experiencing on a regular basis. Many patients are on morphine 24/7, the further their disease progresses. The amount of morphine required to address air hunger is quite a bit less than the amount used to address pain. If, for instance, my mother becomes sleepy or has trouble moving after a dose of morphine, I'VE GIVEN HER TOO MUCH. This is important. The RN was very careful to underline that it is typical for respiratory patients who are using morphine to address air hunger not to also appear to be doped up. They should be able, once they're used to it, to go about their regular activities as usual.
- Using morphine for air hunger often allows the patient to use less oxygen. In fact, as I mentioned to the RN, although morphine is supposed to "trick" the CO2 receptors in the brain into thinking all is well when it isn't, I learned from one of those links on oxygen toxicity that respiratory patients on morphine often actually register better CO2 levels. The scientific reason for this isn't known; the theory is that when a person's breathing relaxes they breathe more deeply and slowly, thus taking in more oxygen and releasing more CO2.
- My mother's breaths-per-minute (28 today when the nurse measured them) are at the "upper limit" of acceptability before it's a good idea to start using morphine. So, we're probably within days of using it.
- If I should accidentally give too much on the first dose (in other words, if the recommended first dose is more than she needs) and she becomes drowsy, falls asleep without warning or cannot move with her usual facility, DO NOT GIVE A SECOND DOSE UNTIL THE FIRST DOSE HAS WORN OFF. Then, of course, modify the second dose until we've found the right dose to keep her breathing comfortably and keep her life going as normal.
- Constipation is expected, which can be addressed with stool softeners and/or laxatives. Hospice prefers using ducosate sodium as a stool softener and senna as a laxative. Thr Hospice RN ordered us some of both.
Why I wasn't able to get this information before, I don't know. Perhaps I didn't know enough to ask for it. Maybe there has been a generalized fear that no one wanted to give me "too much" information. Maybe it was a combination of these. At any rate, I get it, now, and I'm relaxed about the issue; as much as I can be, anyway, before having tried it on Mom.
I have more information about the contents of the Comfort Pack, and, as well, I'll be establishing a link between this post and the Morphine Manual over at The Dailies. It's time to awaken the Mom from her nap, though, plus a few minutes.
We didn't put up the trees tonight.
Although Mom's "morning" wasn't scintillating, it wasn't bad, either. She's been retaining a little fluid here and there over the last few days and this has slowed her down (if you can imagine her any slower than usual).
The second half of Mom's day, though, was bad, for both of us, worse for her at the beginning, worse for me through the middle and toward the end. It was so bad that I was silent through most of it in order to try to keep from being too much of an asshole, which worked marginally; turns out, one needn't talk to be an asshole.
Not that I intend to give a blow-by-blow account, but it started when I realized about halfway through the first part of Mom's day that I was going to need a nap again today. I hate taking naps. They leave me disoriented. I couldn't figure out why I was so exhausted, since I'd gotten a good sleep last night, although it was interrupted by a strange but not frightening dream in which Mom and I, in our life here as it is in reality, were stalked, throughout, by, well, someone...I awoke before discovering the identity of the stalker. It was obvious that the stalker was not dangerous, this was the reason why, in the dream, I was so keen to discover the stalker's identity; his/her purpose seemed benign and benevolent. When I awoke it occurred to me that I had animated Death as the stalker...but I wasn't, and still am not, sure of that. The dream puzzled me all morning. Although I don't think this was the primary cause of my exhaustion and low spirits, I think it contributed. So, I was not as energetic and "head-'em-up, move-'em-out" in my approach to Mom. It didn't seem to make a difference, at the time. However, when I attempted to awaken her after a three hour nap, she was more than uncooperative; she was determined to stay put. Sometimes I'll give in, as I did this morning...I ended up letting her sleep until she roused herself, today, which happened at 1400. This evening, though, although I would have been fine with a Bedside Evening, I could absolutely not convince her to arise in order to make a bathroom run and get her into her pajamas (which are her usual lounge wear for a Bedside Evening). I wasn't in the mood. I physically lifted her from reclining into a sitting position. Twice. I crawled around her on the bed and sat against her back, after pulling her up the second time, to make sure she took her breathing treatment sitting up, since the contraption we use with the mask leaks when she's lying down, even when her upper body is elevated. When she refused to rise to get into the wheelchair for the bathroom run I squatted into Lift Position before her, even though I've been fairly unsuccessful with lifting her, lately, since she no longer works with me, and, literally, picked her up and swung her into the chair.
Although she continued to insist that she was feeling no pain or discomfort, she just wanted to go back to sleep, her groaning and huffing and puffing told me otherwise, so I decided to put off the bathroom run and feed her a modified dinner (tuna sandwich on toast with lemon-ginger tea) in order to soften the 500 mg of acetaminophen I decided to give her, as well as all her other evening meds. By the time she polished off all this she was in a fine mood, no longer interested in going back to bed, wanting to watch some TV. Unfortunately, she also remembered that we'd talked about putting up the trees tonight.
I couldn't do it. I simply couldn't face glittery ornaments and garlands after everything I'd just gone through to get the woman moving. I needed an evening of separation from her: From her need for my energy; from her need for my reminders and support for every bodily function imaginable; from her need for my spirit to keep hers attached to this life as she continues to want to be attached. That's when I shut down.
Mom was fine, as far as I could tell, with my distance. I was brisk, talked little, motioned most of my instructions, occasionally delivered a resonant, one or two word order, even washed her hair, although I discovered I didn't want to touch her enough to set it in curlers so I scrambled it with mousse, knowing that this dries itself into the makings of a jaunty hairstyle by morning.
The worst part of the evening, though, was that I played a little desperation tape in my head repeatedly: "How long can I keep this up? I don't think I can do this to the end, but I can't turn her over to others for even a few days, either; every time I've done that the clean-up afterword hasn't been worth it. I can just imagine how she'd come back to me, this time: Constipated, pressure bruised, rashed up and strung out on morphine before it was necessary...WHAT ARE WE THINKING THAT WE CAN'T TAKE CARE OF OUR ELDERS OR OUR CAREGIVERS ADEQUATELY?!?!?!"
All I could think about was that I couldn't help but wonder if maybe I don't have the stamina to continue taking care of this old, sick, tired, demented, needy woman, a woman who thinks of herself as none of these and, therefore, isn't capable of being aware of how much of my energy it takes to keep her alive for as long as she wants to hang around in this existence. Then, out of left field, as I was, yet again briskly, tucking her into bed, came a revelation: I suddenly remembered this picture of her when she was a girl. Her dreams, her delight, her spirit, blazed from this image...and rekindled my heart. I realized, that's who I'm taking care of, that's who I'm nurturing, that's who I'm loving, because that's who she is. No wonder she becomes indignant when I find it necessary to alert her to what I consider to be her "real" situation; I'm talking about insignificant paraphernalia, I'm not talking about her.
Now that I've finally realized who my mother is, I can do better than hang in there with her, I can hang on to the spirit captured in that picture as long as that spirit wants to dream and delight and blaze. Yes. I can.
Well, damn! That was easy!
Here's the skinny on mixing acetaminophen and ibuprofen. It was the first link up when I googled the words (without quotes): ibuprofen acetaminophen mixing.
I'm going to check out a few more of the links, but I'll bet this covers the subject nicely.
A Few Minutes Later:
Here's another good apropos link; with a little more data. I think these two together do the trick.
Yesterday was one of Mom's "longer up" days...
...much to our surprise, especially since, despite being up a full 10 hours, movement was iffy, primarily because of her breathing. We've more and more tended to dialing her up to 5/lpm when sitting, but, previous to a couple of days ago, 5/lpm seemed adequate for moving, too. Yesterday, after two episodes of unusual breathlessness both times that she walked (she only walked twice yesterday, see post for yesterday over at the current movement journal), I wondered if I should boost her to 6/lpm when she wants to try moving, although my guess is that she's probably not going to do as much moving as previously. Today, just to be safe, I'm going to make sure that I don't encourage movement immediately after she arises; which means I'll be insisting on the wheelchair at least after night sleep and nap sleep. It's also possible, of course, that the last two days are a blip and she may settle down, for a bit, before "settling up" permanently.
In the meantime I couldn't help but recall that our Hospice MD and our Hospice RN have sternly cautioned me about hyperoxia, also referred to as oxygen toxicity, the receipt of too much oxygen. Both times, when I've asked what the symptoms and dangers are, they've demurred. One of our Hospice people, in fact, responded that, all things considered, it was likely that my mother would not ever receive enough oxygen to put her in danger of hyperoxia. Their responses were obviously unsatisfying, so, since I'm considering asking to have her oxygen Rx rewritten to include a boost to 6/lpm when necessary, I did a little research last night. I bookmarked a few of the links that pretty much summarize what I learned. It seems that there is some controversy regarding hyperoxia and COPD/Emphysema/Lung Cancer patients. One side is full of dire warnings about situational dementia, lung damage and death. The other side, which maintains a slightly larger balance of concern, is over the possibility of causing hypoxia, the critical lack of oxygen, in these patients. That last link is to an online discussion among emergency response technicians regarding oxygen delivery procedure. I found it interesting because one of my brothers-in-law is a volunteer firefighter in a rural area and has been receiving training for some time in EMT procedure. His latest information has been that he and his cohorts are instructed not to deliver oxygen at levels higher than 4/lpm during on-the-scene emergency care and transport, and to be particularly attentive to irritation due to extremely low humidity delivery. Some sources are indignantly on the side of delivering the oxygen necessary to prevent breathlessness above all other concerns. I also wanted to know how all this translates into liters per minute. I found that information here. You'll notice that this link recommends humidification above 4/lpm. When my mother was in rehab (during the monsoon season, it should be noted) a humidifier was attached to her concentrator. Within minutes she became breathless and began gasping. At that time she was at around 3/lpm. I detached the humidifier and she recovered immediately. We have a humidification attachment for our concentrator, although I haven't yet used it. I'm running a free-standing humidifier in her bedroom at full blast when she's sleeping, which seems to help; certainly, it significantly reduced nasal membrane bleeding. During the day, though, I don't use anything except liberal applications of water soluble lubricant; mainly I hadn't thought of anything else until last night. So, today, I'll be moving the humidifier around the house as Mom moves, hoping to increase the humidity, at least slightly, in her immediate vicinity. It occurred to me to use the concentrator humidifier attachment on the tanks; I may even try it on the concentrator today while she's napping, keeping a close eye on her to make sure she doesn't become breathless, again...it could be that direct delivery of humidity to her lungs isn't a good thing for her. At any rate, I examined the attachment and the mobile tank set up and can't figure out a way to use the humidifier with the tank. I think I may need a cord adapter, if such a thing exists. Then again, I may be missing something.
So, this will be a subject for discussion during tomorrow's Hospice RN visit. Come to think of it, this is a good time for me to list the things I want to talk about, as a reminder:
- Boosting Mom's O2 delivery above 5/lpm, when necessary, discussing how far we can go with addressing air hunger with O2, when to consider addressing it with morphine and how to handle the humidity factor (humidity is notoriously low, here, in fall and winter; during the summer, of course, it wasn't a problem). This will also involve getting another concentrator, as the one she currently uses only goes to a little over 5/lpm.
- I want to go through the "Comfort Pack" and be thoroughly apprised of all medications contained what types of pain and discomfort, specifically, they are designed to address and, if possible, exactly how they work.
I may have to do my own research on this, although, I have to say, our Hospice RN, when I can get him to cooperate with my desire for knowledge, has shown himself to be formidably technically informed and an excellent teacher. As an aside: I'm not sure why I have such trouble getting specific information from the medical people involved in my mother's care, including Hospice people, except for one, the weekday evenings on call Hospice RN. My guess is that it is a general medical concern that lay people are going to inappropriately latch onto bits of unrelated data and somehow compromise the patient's condition. Get over it guys! I've seen plenty of nurses and doctors do this, on my mother, I've even intervened during certain instances, when it's not too late, and, believe me, I do it far less than Medicine does!
- Why, I'd like to know, are "we" considering dropping the glipizide at some point?
- Am I accurate in my assessment that Mom's condition is moving along fairly quickly, now? At this point, can I still count on at least a few "Good Cancer Day" cycles or are we moving past that point?
- As of yesterday, I'm switching back from General Purpose Ibuprofen to General Purpose Acetaminophen. Over previous days of using ibuprofen, it's occurred to me that Mom actually does better on acetaminophen. Making the switch yesterday seemed to confirm this observation. I'm not counting the ibuprofen out, but, you know, we'll just take it moment to moment.
Oh, yeah, that reminds me, I want to check on the advisability of using acetaminophen and ibuprofen in "close quarters", i.e., within the same 12-24 hour period. I asked our RN about this last week because it seems to me I've heard or read that there are certain concerns about mixing these two analgesics too closely, but he led me through a vague Socratic discussion that could have been labeled "An Analgesic Is An Analgesic, Does It Seem Likely That Mixing Matters?" This accomplished nothing in the way of actual information. I think I'll do that when I finish this post, assuming I have time. I'll report back if I discover anything of interest or concern.
- If there is anything, besides what I'm already doing, that I can do to make nose blowing easier and less breathless for Mom.
- Re-up breathing meds.
"Good," she said, "it's better than your griping."
Oops! "Have I been griping a lot, lately? I thought I'd mellowed out over the last few weeks."
"Weeeellll...let's just say you've had your moments, lately. Several."
No matter. The holiday season has officially begun in our home as of yesterday evening. Although I'm not what you'd call a devotee of holidays, even though I love winter (somewhere where it rains and snows, actually, which often leaves out Prescott) and holiday lights, since my mother is Mrs. Christmas, living with her has sweetened my previously grinchy attitude toward The Holiday Season, especially the movies and the music. Although I'm still known to contemplate their approach with dread, once I can sing the songs and join my mother in dancing the dance, well, suffice it to say that ushering my mother through the holidays on her terms has its perks.
Today is open-ended. I'll be awakening her around 1300, unless she rouses earlier on her own. We have no plans, I haven't even figured out what we're going to do for dinner, so it might be a Fast Food night. I'm hoping that she feels fairly good and that constant Christmas music in the background (or foreground, depending) will allow her to feel "better", regardless.
Oh, by the way, The Mom & Me Journals dot Net has received a touching, surprising, lovely write-up over at Dethmama Chronicles, for which I am ever grateful. If you haven't yet visited over there, do. Although it's full of lots of interesting stuff, her stories about dealing with her Hospice clients are riveting and do much to pull back the drapes on the mysterious world of those ensconced in death watches and the wake of death. And, I repeat, it's highly readable...you're not going to be overwhelmed by words, as can happen over here. Go. Now. Just do it.
I peaked in on Mom at 1215 because I heard her sneeze. I asked her if she was ready to get up. She wanted more time, so I gave her a choice, 45 minutes to 1300 or an hour and a quarter to 1330, which would be her 12-hour-sleep-mark. Any wonder what she chose? Guess I have a little time to research analgesic mixing.
Aside from the great pleasure my mother took in Visiting Day...
...the day was exhausting for her. She loves visitors, especially family; she loves all the mental activity involved in catching up, reacquainting and the heightened atmosphere of multiple people in conversation. She is always self-possessed and self-assured with company. Even though it's been some years since she's been mobile during visits, either here or at the homes of others, she likes the extra movement, the flurry of people coming and going, rearranging themselves within a defined space. She gets high on the excitement and "the love". It used to be, some decades ago, that a visiting day meant a prolonged evening dedicated to savoring the visit, branding it to memory. This is no longer the case.
I know I mentioned that her spirit remains in the habit of remaining up for Visit Rehashing...her body, though, does not. She slept hard and deep during her nap, last night and was very hard to rouse. Instead of chuckling when I clambered over her to scratch and rub her back, she groaned. She didn't even twitch as The Little Girl prowled over her side and stomach, trying to nudge her into some miscellaneous petting. She was pretty adamant that she didn't think it was necessary to do anything besides sleep through the night. So, I designed a Bedside Evening and, surprisingly, managed to involve her in it. Truth is, I wasn't sure that this would work.
She didn't talk much, except to insist, toward the visit's end, that she move around the table and be allowed to use MPBIL's slick, complicated camera to take a shot of everyone without her. It wasn't easy to dissuade her, but the effort of attempting to push herself, in her chair, away from the table to rise did the trick. Because she was so quiet, I missed her intensity as I interacted with company. Thus, I was surprised to discover, during Evening Rehash, that she'd picked up quite a bit of news. She commented on MPBIL's hat and we discussed the astonishing quality and beauty of Stetsons, with which she was familiar but about which I'd remained in ignorance until I noticed MPBIL's, yesterday, and was allowed to examine it. She asked, "Now, what was that about a 'great guy' for [MPNC]? He sounds good, but are we sure about him?" revealing that she'd paid close attention to our discussion of MPNC's new boyfriend. Some of the conversation had revolved around the vagaries of insurance, specifically in regard to plumbing disasters. During Rehash Mom dredged up an eight and a half year old memory of our plumbing disaster and quizzed me about how much had been covered by our home insurance, as though the disaster happened yesterday, remembering that MPBIL's insurance had covered the plumbing repair for their recent disaster (ours had not). She remarked, as well, on "how good everyone looked", which they did, going on to mention that MPS seemed "much more settled with teaching" (even though we hadn't talked about her teaching, this time), which required harking back to memories of MPS' first distressing years in the profession.
No wonder Mom was exhausted and opted for a short, sweet Bedside Evening (and would have opted for sleeping through, had I allowed it). During visits, now-a-days, the woman appears to be a little to the side of what's going on...but, turns out, she's fully present, focused, and terribly busy, besides.
A lot of this transpired because the visit took place close around her. This isn't always the case. For the last few relative visits Mom's been forced to the periphery, mainly because, somehow or another, they've tended to revolve around me and take place through multiple rooms in the house, outside and on shopping trips, which makes it difficult for Mom to keep up. She remains, however, even now as her health declines, visit oriented. I need to remember this and make sure, from now on, that she takes the pivot point during future visits.
Although it seemed like a "short" day for Mom, I was surprised to discover, during my Dailies tally, that she was up eight hours, just slightly under her average. When she retired at midnight, which is early, for her, I mentioned to her that I'd be awakening her at noon, so her day would be getting an earlier than usual start. Yet again, her memory of what seems like the inconsequential food detail in our lives surprised me. "Good," she said, "maybe we can order pizza for dinner." Our favorite pizza place has restricted hours, now, for take out...probably due to slowed business.
Maybe we can.
Intriguing, what a mental workout can do for a decidedly "creative" mind!
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson