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 29, 2008
Really successful, enjoyable visit!
    Mom was in her element, I was completely relaxed despite all the little observations and interventions (changing O2 tanks, administering breathing treatments on time, administering pills on time, attempting to get her to blow her nose once, which was unsuccessful) that must continue no matter what's going on here. I decided, at the start of her day, to forget stats and just make sure that she received an extra glipizide during her day. Good thing I did. My mother ate from the time company arrived to the time they left.
    She had such a good time that she wanted to forget about napping, when company left, and rehash the visit. I could see, though, that while her spirit might have been up to this, her body clearly was not. I didn't argue, though, I just told her that, in any case, we needed to make a trip to the bathroom, change out her underwear, etc. Once there, she decided she was "overdue" for a nap.
    I guess no one from The Dead Zone showed up, today. As we were finishing up in the bathroom Mom mentioned to me that she was "glad that all the other people" didn't show up. It would have made for a confusing visit, she said. This way, "we all got to enjoy each other's company."
    Although I will awaken her once more before night sleep, as her hours, lately, have driven us into the wee morning, so it will be appropriate and, of course, there are medications that need to be administered (I constantly tease Mom that, "you can't do anything without a pill"), paper underwear that needs to be changed, etc., I expect it will be a short "evening". I'll mention continuing the Apes fest, but I expect that will be tabled until tomorrow. My guess is that the Visit Rehash will take place between 2230 and night sleep time. I'm looking forward to learning what struck her about the visit, and, for that matter, who she remembers was here.
Today is our "big" "family" Thanksgiving Day.
    I've kept Mom apprised, daily, of today's approach. Yesterday she was unusually excited. Despite my precise, repeated descriptions of who's coming (turns out it'll be two, MPS and MPBIL, MPNC is on call at work during the still hoped for "black" weekend), I have not been able to dissuade Mom from expecting "the girls" (which means all four of her daughters, including me, and their families), or "the family" (which means all Dead Zone people and a few who still inhabit this plane of existence). My experience tells me that it's entirely possible that, in Mom's perception, she will be delightfully overwhelmed with visitors, today, even though I'll only be able to interact with two of them. One of the things I love about being Mom's companion during this stage of her life is that she keeps us in very close touch with everyone she's ever known or to whom she's been related...she even makes me wish that I was able to perceive The Dead Zone as easily as she.
    Despite her excitement, I've learned over the last few months that it's unwise to alter her hours. Since they've been running late, of late, I'll be awakening her at 1400, her precise 12-hour-sleep mark (we got involved in our second Planet of the Apes fest, last night, when she noticed that one of the network channels was playing back-to-back Apes movies and wanted to see them; good thing we own them and can schedule our fest according to her hours). Company will arrive between 1530 and 1600, bringing what will be Mom's breakfast. I've left the choice of food up to them.
    I still haven't managed to get my hair cut, but everything around here looks a little shaggy, so I fit right in. Other than that, I'm looking forward to the visit, too. My attitude has been flying a little low, lately, and could use a pick-me-up.
Friday, November 28, 2008
Early this morning...
...after one and a half watchings of My Fair Lady (Mom decided to nap halfway through the first showing and insisted, when she awoke, that we start the movie over) and a very successful and savory Thanksgiving dinner, as we were working our way through our pre-bed ritual my mother began sighing and sighing and sighing.
    I thought she might be in some sort of low level pain, discomfort or breathlessness but after several nosy questions I determined she wasn't. Day before yesterday I'd mistaken what she told me was "humming" for a spasm of pain-or-discomfort related sighing so I checked out that possibility. Since we'd just watched a musical I thought maybe she was humming some of the popular tunes, since we'd sung along to several during the movie, even rocker danced through I Could Have Danced All Night. She wasn't humming.
    Mystified, another thought came into my head. I decided to matter-of-factly ask her, my immortal mother, if she felt that "death is close."
    The question, alone, stopped her sighing in it's tracks. "What ever gave you that idea?" She was clearly indignant.
    "Well," I scrambled, "all that sighing for what seems like no reason..."
    "Oh, I've got a reason, all right!"
    I couldn't help it. I laughed. "Okay, well, since I'm concerned, can you tell me, what's your reason?"
    "If you feel you must know, it's been a good, long day (it had been...altogether she was up for 10 hours) and I'm tired and ready for bed. Is that all right?!?"
    More laughter. "Yes, of course. It's just that you've only been sighing lately. I just wondered..."
    "Did anyone ever tell you you think too much?"
    "Yes. My mother tells me that. A lot."
    She grinned. "Maybe you should listen to your mother."
    Maybe I should.
Thursday, November 27, 2008
Finish this sentence: "Everyone has to blow their nose after..."
    Funny the things one notices when one is plying the trade of Intense Needs Caregiver. The above question is one on which I've tested my mother almost daily for at least a month, at least once a day, usually twice. Mom knows the answer: "...sneezing and bowel movements." We've both learned that blowing one's nose during a sneezing fit usually stops the fit. As far as bowel movements go, somewhere in my life, probably while I've been my mother's companion and caregiver, I read, someplace, that when the body produces mucous to ease bowel elimination, it produces mucous from all its mucous membranes; it doesn't isolate the ones in the bowel, an easily observable bit of data.
    This information has become important, lately, because my mother's breathing is now so compromised that when she blows her nose she can't dally or she becomes critically breathless, whether or not she blows "around" the cannula, which I now encourage her to do (I then quickly clean the cannula after she's finished and replace it) or takes the cannula out (which she is wont to do and which I's hard to feel as though your nose is sufficiently blown clean when you've got plastic tubes in your nostrils). Either way, nose blowing is a dicey proposition, now, and always involves a couple minutes of breath recovery. I don't think she used to think twice about it. Now, though, she associates nose blowing with breathlessness and is reluctant to blow unless I remind her it's necessary. Why is it necessary? Because she often allows her nose become so stuffed with backed-up mucous and general nose shit that it blocks her breathing. I try not to bother her about it too much. If her breathing seems even and not labored I'll let a blowing session go, even if her voice sounds like her nasal passages are blocked. Sneezing or bowel movements, though, demand a good blow. So, for that matter, does awakening from night sleep.
    This week, which has been fairly critical for her breathing, I've established a mental tick to ask our Hospice RN, next week, if there are any available techniques for cleaning someone's nose that reduce the amount of breathlessness implied in this simple chore which most of us take so for granted we probably aren't even aware of it unless we have a cold. I try to keep all that nose stuff moist enough, with frequent applications of water soluble lubricant, so that it's easy to expel. I've tried applying it when she's sleeping but, well, imagine how you'd react if someone consistently fiddled with your nose while you were sleeping!
    Another concern seems to be developing. Two mornings in a row my mother has awakened before she's ready to arise, taken the cannula out of her nose, putting herself in respiratory distress, then called me frantically. We've managed to handle the situation before it works itself into yet another episode of incredible pain, but I'm concerned because it has been my habit to perform errands in the morning and in the late afternoon while she's sleeping. Luckily, I was home both of these two mornings, but, you know, what if I wasn't? It seems likely that my days of carefree errand wandering while she sleeps are coming to an end. I don't know why my mother is insisting on taking her cannula out, except that she's gone through phases of this before and I guess we're just going through another. It's previously never been a dangerous practice, though. It is, now.
    We tried using that easy-on-the-skin tape last night in the bathroom during night-sleep prep but she was not happy with it and I could imagine her ripping it off, with the cannula, in her sleep.
    I can, of course, call on Hospice volunteers, and probably will. I'll need to schedule them ahead, which means a bit more planning than is typical for me, but that's not a problem. In the meantime, tomorrow, for instance, when I plan to get my hair cut really early in the morning, soon after 0800, I'm going to retry a technique that has been successful before: Awakening her just before I go and, while she's still a little drowsy and her subconscious mind is pliable, telling her I'm leaving, where I'm going, how long I'll be gone and that I'll check on her as soon as I get back, so she is to stay in bed, asleep, until then. It's worked very well for us, before; so well that, on occasion, when I let her know the night before of errand plans for the next morning, she'll remind me to tell her just before I go. Now, of course, I'll add the dictate, "Don't touch your cannula," or some such thing. I'm hoping this technique remains viable.

    Yes, we're having a Thanksgiving meal today, even though we won't be celebrating with family until Saturday. Some (not sure how many) shoots off the Phoenix branch are coming up for a visit of a few hours on Saturday. In the meantime, I will finally be making the beef pot pie I've been threatening to make out of left over hunks of this last year's Hoisin Pot Roast for dinner tonight. In addition, my mother, while indulging in one of her favorite activities of browsing the holiday catalogs that arrive at our house, came up with two great ideas, the first associated with Thanksgiving, the second associated with Christmas:    Hmmm...I started this post, the time label tells me, at 1249 today. Mom awoke earlier than I expected at 1330, so I left it until now, 1907. Although she was not happy with the weather again today and spent the first part of her day "under" it, she was alert, ate well, watched half of My Fair Lady while supervising my constructing of the beef pot pie and trying to get me to bake it immediately so that she could try some before she went down for a nap. Right now, all cats and Honorary Cats (my mother is the Honorary; our cats have dubbed her this since discovering that she has a talent for sleep) are napping and I can finish off this post and relax for a bit.
    Oh, did I mention? I've link-checked all sections. I was thorough, but I'm assuming I missed a few here and there. However, all search engines connected to the various sites (which depend upon accurate links) are up and running. I'll be indexing the three I write in most, including this one, every couple of days. My final project consists of fixing all the links in the test results section, adding the final tests from her hospital and rehab stays (I still have to request from the hospital the final lung CT, from which my mother's lung cancer was diagnosed but, for some wonderful reason, I'm no longer rabid about obtaining copies of this stage they are only of peripheral interest) and moving everything over to the domain. That may take awhile. In the meantime, all tests are still viewable on their old server...just don't use the links sections to the left on the pages.
    Maybe I'll catch up on some of the news critique programs I recorded last week. Maybe I'll do some reading. Maybe I'll just "chill". Oh, yeah, that reminds me...but, you know, I think I'll cover that...
Wednesday, November 26, 2008
Today has been a hard-to-keep-up-with-Mom day.
    Well, make that yesterday. And, make that half a day, as it was really the latter half of her day that threw me off guard. This morning went well. I've been priming her for the Hospice RN's visit, as I usually do; I wasn't sure he was going to arrive today, even though Tuesday is his "regular day"...I hadn't heard from him and sometimes this means his schedule has changed or we're going to be visited by one of the delightful subs, all of who we enjoy, usually the day after our regular visit day. Since I hadn't heard, I decided I'd let her sleep up to her 12-hour-sleep-mark and, if I still hadn't heard, take a studied peak at her and decide, from there, whether to let her drowse a while longer. Our Hospice RN called at 1205, though, so I told him I'd awaken her at 1230 as I'd planned and she should be at the breakfast table by "one thirty or two, probably closer to two".
    As I awakened Mom I reminded her it was visit day. This accomplished a lot. Because she's been very slow and very tired for the past few days, getting her up has been an unusually protracted experience, lately. Today, though, she could easily have been crowned "Twinkle Butt", as she was whipped herself up to the edge of her bed with hardly any prompting from me.
    Still slow, still tired but full anticipation, our bathing routine went well. She was chattier than she has been in awhile. We improvised little song refrains as we worked through our bathroom routine. When our RN asked her how she felt she reported, as usual, that she felt "just fine", or something like that. She had no memory of her recent breathing problems, about which he asked her. I let her response stand as the PRN med list I give him every visit for the previous week told the actual story. The visit went well, Mom even had the presence of mind, for the first time, to tell our RN that she looked forward to seeing him next week, which blew me away. Mom's breakfast went well, she was even up for hoofing it around the table and down the dinette steps into the living room even though she'd opted for the wheelchair from the bathroom to the dinette. She decided she was ready for a nap much earlier than she has, lately, but I wasn't surprised. Excitement and visits can be exhausting for her and, besides, we've got a weather low working its way in so the day was overcast, which she mentioned after our RN left, so I know it was affecting her. I decided to give her a good four hours before I attempted to awaken her from her nap. That's when the trouble started.
    She was laying in bed with her eyes open. This is always an optimistic sign for me...I even say to her, "Ah, you were waiting for me to get you up!" Sometimes she beats me to the punch and says, "I was wondering when you were going to be coming in."
    Today, her response was, "No, I was wondering how long it would take me to get back to sleep," upon which she closed her eyes and snuggled further under the covers.
    As you know, I'm pretty easy about Sleep Days, Bedside Evenings, etc., so I didn't have a problem with this. I figured that, as usual, a quick reminder that, even if she wanted to go back to bed, she needed a change of underwear, some hydration and a few pills, maybe a piece of toast and some ginger tea...
    She wasn't having any. Not nothin'. She was so vigorous in her refusal, though, that I finally figured out that this was the detail about Sunday that made me decide to forgo a Bedside Evening and get her "all the way up". I guess she's still having bouts of spiritual healing in the form of spasmodic "Fuck you, I'm going to live forever and I can do whatever I goddamn well please" attitudes. So, I insisted, again, tonight, on getting her into the living room. Again, initially, she wasn't happy about it, although later she relented and mentioned that she was pleased she hadn't missed yet another Hallmark movie. She didn't look as good, tonight, as she did Sunday night: Her mouth and her lower eyelids were droopy and she seemed a little dazed. Could be "something" coming on, I considered, but still felt it had been a good idea to get her out of her bedroom for awhile.
    She refused the dinner I'd prepared, which was fine. We're good with leftovers. She ate a full bowl of Hot & Sour soup, though, and was clearly thirsty even though she'd informed me earlier, when I set a cup of coffee in front of her, that I could "take it away, I don't need it;" thus, quite a bit of my evening was devoted to me reminding her to "take a drink", which she did willingly, thank the gods. Sometimes she doesn't.
    She had some trouble with her breathing because she was refusing to blow her nose. I totally get her problem with nose blowing. The act of blowing out, with or without the cannula in her nose, makes her breathless. About half the time, when I know she needs to blow her nose, I let it go because I also know that the breathlessness this minor chore causes is going to overwhelm her. There comes a time, though, when it's necessary and it was tonight: Her breathing was so labored that she was working herself into an incredible pain episode, even through the 200 mg of ibuprofen for a minor lower back ache (and general purposes) I'd given her with her soup. Although nose blowing was difficult and, for a few moments, left her laboring for breath, a few moments after that she pinked up and breathed more easily. When I asked her if her back still hurt she gave me one of those, "What do you mean? My back wasn't hurting!" looks.
    Still and all she decided to head for bed early, which was also fine with me. She looked like she could use a looooong night. Her head hit the pillow at 2230. I told her, as she was closing her eyes, that I'd let her go at least until noon tomorrow, longer if it seemed appropriate, although it probably won't. I can hear her breathing through the sound monitor and it's been deep, regular and peaceful all evening. She's even snored, which is a good sign for her. It means she's completely relaxed, maybe even visiting The Dead Zone. Despite our weather promising to rain on her parade, tomorrow, she'll probably be in a much better mood. Unless, of course, "something" is coming on and "it" decides to hit tomorrow.
    Here's hoping. We could both do with a "Good Cancer Cycle Day", right now.

Miscellaneous Shit:    ...later.
Monday, November 24, 2008
Mom got a bit of a spiritual scare yesterday morning...
...and, although I didn't catch it at the time, I think she spent the day trying to heal from it.
    When Mom awoke she took her cannula off. I had already heard her, through the sound monitor, rousing, so I was already in action. As I gathered the usual "things" (the BG monitor, the breathing treatment machine, the breathing treatment accouterments) on my way into the bedroom I heard her begin a coughing fit. I was pretty sure I knew what the problem was, as the only time she has a coughing fit, now, is when she's displaced or removed her cannula. Sure enough, she was sitting on the edge of the bed with the nasal tube part of the cannula resting in her hair like a crown, coughing desperately to catch her breath. My guess is that she'd had the cannula in her hair no more than a minute. I quickly replaced it, then, I delivered an impromptu sermonette (not the first time I've done this in the last month) about how important it is for her to keep that cannula in 24/7 and what neglecting this could mean. I tried not to be harsh but I also knew that if I wasn't stern her subconscious would retain none of what I said. The sermonette went something like this:
Mom, I know it's hard for you to grasp because your breathing capacity has declined so quickly (which is true; prior to 5/14/08 taking her cannula out caused only minor respiratory distress, which took awhile to catch up to her), but you can no longer go without the cannula in your nose. Ever. That's why I'm having you blow your nose with the cannula in, now. That's why, when I switch you between the machine and the tank or change out tanks I do it so quickly; so your lungs will only barely notice the seconds you go without oxygen. Mom, I know that this distress is a pretty new thing...but we have to pay attention to it. It was doubtful, before, that you put your life in immediate danger when you took the cannula out. It's no longer doubtful. Your lungs are so compromised that leaving the cannula out for just a very few minutes can seriously endanger your life.
I know, consciously, you aren't going to remember this, but I have great faith in your subconscious and I will underline that faith by continuing to remind you, a couple of times a day, at least, to keep that cannula in. You can no longer take a devil-may-care attitude toward your body, Mom, it's not working well enough for you to risk it, anymore.
    Her overt response was, as usual when I correct her behavior, to tell me I don't know what I'm talking about, she's just fine and fit to make decisions about what she needs and what she doesn't. Underneath this indignant exterior, though, yesterday morning I detected that this episode in particular scared her, despite the fact that she wasn't without oxygen long enough to lead to that hard, steady, incredible middle back pain, as has occurred a couple of times within the last three weeks or so. Maybe her subconscious mind put 1 painful incident + another + the incident yesterday together and she suddenly "got it".
    Anyway, our day continued fairly well; her initial (for the day) walk into the bathroom was better than I've seen for a few days, in fact, which I pointed out to her and on which I congratulated her. From that point on, though, she appeared to lose confidence and we spent the rest of the first part of her day wheeling. Then, even though she was emotionally prepped, pre-nap, for an evening full of one of her favorite dinners, an unusual dessert and a Hallmark movie she's been wanting to see, An Old Fashioned Thanksgiving, of particular interest to her because the ads for it mention that it is adapted from a story by Louisa May Alcott, and I'd successfully recorded for her, after her nap she was unusually hard to rouse, for no usual reason that I could detect.
    Lately I've gotten into the habit of crawling into her bed behind her and rubbing and scratching her back in order to awaken her pleasantly. It makes her giggle to have me scramble over her (she always sleeps with her back facing the wall) and the back work makes her sigh with pleasure. What better way to awaken? Well, last night, even this didn't work. She appeared to enjoy what I was doing but kept her eyes tightly closed and mumbled, every couple of minutes, "I don't want to get up," and "just let me sleep through the night," etc. Her usual Bedside Evening comments. But, last night, she mumbled them with a detectable undertone of, "I don't want to ever get up, what's the use?" Something told me, although, eventually, I'll probably have to adjust to this attitude, as it could overwhelm her and become intransigent the closer she gets to death, that last night was not the night to give in to it. I wish I could explain in detail why I thought this, as I imagine it would be useful for other caregivers who are tending their care recipients through their last days...but I can't. Maybe it was because, despite her insistence on staying in bed, she had moved her legs so that her calves hung over the edge in readiness to arise (I usually do this for her). Maybe it was something about the tone of her voice. I'll think on it further...but I'm not promising any results.
    Anyway, my instincts took over and, finally, I scrambled back over her to the side of her bed, embraced her with my arms and lifted the upper half of her body to a sitting position. She wasn't happy, but she didn't attempt to return to a full recline. After several more minutes of convincing her that getting up was a good thing (I considered a Bedside Evening but thought the better of it), we finally went through our post-nap ritual and, some time after 2200 she was seated in the living room enjoying both her dinner and the movie. A good hour into our evening she even said, "I'm glad you got me up," so, she remembered that she hadn't been in favor of arising earlier in the evening; and, I guess, my instincts, last night, were reliable.
    I was, however, still mystified about the incident and continued to mull it over as our evening progressed. Finally, not too long before Mom was ready to retire for the night, it hit me: Maybe the shortness-of-breath incident and my resulting sermonette had so frightened her that her spirit and been injured and she had, for some hours, lost her faith in her ability to continue. Her faith revived but, frankly, it took most of the day and my insistence that she take the evening as we usually take evenings to get her through the injury.
    She has, of late, been remembering, spontaneously, that she has lung cancer, although I'm not sure that she's been remembering, as well, that her health is declining at a somewhat more rapid rate over the last several months than she's used to or that she is considered terminal by Hospice and her body is slowly but surely showing signs that this consideration is proper. When the general subject of cancer comes up (usually on a television ad or when we're talking about family health) she is keen to discuss it, now. About a week ago she was feeling a growth at the base of her throat which she's had for years and which doctors have pronounced non-cancerous and asked if it was cancer. She's been experiencing some intermittent low back aches, which are completely usual for her and have been for years, lately. She was prompted to ask, yesterday, if I thought it was due to "[my] cancer". I assured her that it wasn't, as I'm clear that it's not.
    Yesterday, I guess, her concern piled up on her after the incident of respiratory distress and my sermonette, and I guess her spirit took a dive. It surprised me. I'm sure it surprised her, too.
    I sense, though, that this injury is temporary and will heal, although, of course, it may also put her in a slightly more serious state than she was prior to yesterday. My alertness to her feelings about her life and the nearness (or not) of her death are certainly heightened. We'll see how it goes, you know. But I wanted to record this because it seems this is a landmark in my mother's journey through the last part of her life. Although I'm sure she isn't at the I-just-want-to-die phase, and, who knows, we may never go through that phase, I think she may be realizing that she isn't going to be "getting better", that "this cold" isn't going to "pass".
    Ah. Fragile spirits in fragile bodies. Who's idea was this form of life, anyway?!?

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