Mom & Me Two Archive

...over at Mom's Daily Tests and Meds. There was a lot I didn't remember and some I didn't record but I remembered and recorded enough to give a fairly good profile of those days when she was doing what I thought was mini-stroking but was actually reacting to dangerously low sodium and chloride, leading up to the ER visit on August 1, 2004, in Mesa, and her subsequent hospital stay.
    Since I don't have to worry about rush hour traffic tomorrow, I'll arise when my body decides to awaken on its own. I'm ready, gassed and packed, I just have to shower, eat something, throw stuff in the car, pick up my venti iced non-fat no whipped cream mocha valencia at Starbucks and head out.

    Today's been a good day for me. I'm not sure about Mom's day. I tried her this afternoon twice and didn't get an answer. I hope that means she had company and had therapy. I guess I'll find out tomorrow.
    I spent the afternoon writing notes to myself about "medical" equipment to check out and possibly purchase, arrangements that would work in the master bedroom for us sharing sleeping quarters and things I want to mention to her PCP the next time we see him. I also caught MCS up on what's been going on over the last few days. She suggested an activity in which to involve Mom, when all she wants to do is sit around. Mom used to be a letter writer, always prompt and newsy. She also used to enjoy experimenting with crafts. MCS suggested getting her a stamping set, a few other decorative tools, some blank note cards and set her to designing her own cards and reinstating her letter writing. Excellent idea. It will be one of our first "new routine" activities.
    Now I'm just hanging out and running my figurative fingers through my literal brain, shuffling and reshuffling strands of information and observing the new arrangements. I'm satisfied that everything is going well and that Mom and I can look forward to an even more interesting companionship than we've already shared.
    In yet another e to a friend I wrote earlier today I said:

    You know, it's weird, MFASRF. This is the mother-crisis for which I was not in good condition emotionally. I knew I'd flub this one. Damned if it didn't turn out that this is also the crisis in which I am hitting my stride and not only feeling but wielding my "pow-wah". Wielding it well, too. It really is true, you learn how to do life according to what life presents for you to do. Amazing. I think having faith in this is much handier and more useful, certainly more credible, than hoping that "god won't give me anything I can't handle". I mean, it's very curious, MFASRF, as the entire episode is laying itself out, I find myself, when I have a moment, observing from a distance and realizing how all the earlier mother-crises prepared me for this. It looks as though I passed my exams. You never know until they throw you into the lab, hand you a name tag and say, "Okay, you've got the knowledge and experience, now apply it."
    I don't mean to sound Pollyanna-ish but I'm kind of looking forward to the next "episode" that triggers me into heightened action on behalf of my mother's health and/or our life. It's like I feel pumped, fortunately not at the vomiting stage.
    Regarding that "directive" that triggered the hospital into hyper-action on my and my mother's behalves: I realized a day or so after it worked that if everyone was presenting documents like this to every medical facility it wouldn't have worked as well, it would more likely have been ignored. Several of the criticisms, though, would have affected hospital policy so the need for such a directive wouldn't be acute except in unusual cases, which is an adequate trade-off. I don't know whether you were kidding or not about it being a worthy template for defining your client's relationship with you. It is written, though, on the back of a certain code of business honor that could probably use some manual tinkering every once in awhile to remind people not to take this code of honor for granted.
    So, The Little Girl continues to yowl for Mom in the middle of the night and continues to anticipate Mom's entry into the house on the heels of mine whenever I return home, whether from a visit down-and-up the mountain or from errands. The Big Girl couldn't care less about whether Mom shows up but she is tightly focused on the fact that I've missed a few daily brushings because I've been too tired after I've crawled back up the mountain. She's on sheet two of "owed pettings" that I'll have to make up including the casual ones that happen as we pass each other in the house. Besides that, there were a couple of days when I neglected to clean out the litter box. So when I'm home for awhile, whatever else I'm doing I'm also paying attention to A Girl, usually A Girl full of complaints. Even The Little Girl isn't letting me off easy. Which is wonderful. When I'm coming home from the Valley, I start talking to them at about Dewey, maybe 16 miles from our house. They are the main component of what I consider a productive perspective, considering that I no longer need Black Cohosh to balance me out. I'm glad this mini-crisis happened about the time I no longer need to worry about whether or not I've taken pills.

    That about says it all, and I'm ready to stop saying anything for the rest of the night.
    Later.

...on my mother's behalf for the first time. The circumstances were that she received a partial refund from the State of Arizona for overpayment of taxes in the late 80's as part of a successful class action suit against The State of Arizona. I could have chosen to wait until tomorrow to have her endorse the check at the Skilled Nursing Facility but I wasn't sure that her hand would "work" adequately enough yet to be able to recognizably signaturize. There were also two bills due today that I was considering putting off paying until next week when her monthly annuity flushes out our checking account. Neither would have accrued late charges but, you know, it's always best to pay bills on time when possible and normally we're able to. This month has been very tight, though. Anyway, suddenly I realized that if I present my Durable Power of Attorney papers to the bank I should be able to deposit the check with today's date then pay the bills due online, thus registering us as "paid" on the proper due date.
    I had no idea what I was doing but the bank is used to this and the process was incredibly easy. Curiously, when I explained the circumstances to the woman who served me, that Mom was in a skilled nursing facility and would probably be out next week, but I had bills to pay before she exited the facility, she nodded knowingly.
    "I took care of my mother. It's hard."
    "Yeah," I agreed. "It is hard."
    "Harder than raising kids. I know. I raised 5 of them, then, after they left home, I took care of my mother."
    "Funny you should mention that," I said. "It looks that way to me, but I've never had kids and so many people I know who have kids are constantly telling me 'it's just like having kids'."
    She laughed with an edge. "Yeah. Those people haven't ever taken care of their parents. It only looks like taking care of kids if you've never taken care of an elderly person."
    "Thank you for confirming that for me," I told her.
    "You're welcome," she said. "Caregivers don't usually get their due, because everyone's thinking 'it's just like taking care of kids'."
    I was surprised she kept repeating this and decided to question her a little further while she was processing the Durable Power of Attorney exercise. "So, was this you and your husband who took care of her?"
    She laughed again. "Naw," she said, "he left me before my first (meaning, I assumed, child) left home. Nope. Did it myself. Had no idea what I was letting myself in for. Don't get me wrong, I'd do it again, but I sure wish I'd known ahead of time and had some support. Five brothers and sisters and I ended up doing it myself. I got elected because I lived in the same area as my mother and didn't have kids at home anymore."
    "I got elected because I was the only single kid. To be fair, I want to do it and my mom and I had a very close relationship before she asked me to come live with her for the rest of her life."
    "I know." Her face betrayed a peculiar mixture of rue and satisfaction. "I'm glad I did. I just wish I didn't have to learn everything the hard way. I thought it was going to be just like taking care of kids, too."
    "Fortunately, I don't have kids, so I had nothing to compare it to!"
    She laughed, too. "That is fortunate! My best to your mother. Tell her to hang in there. My very best to you. It doesn't get any easier."
    "Thanks," I said. "I have a feeling you're right. Nothing ever becomes routine. That's for sure."
    A last explosion of laughter. "That's for sure," she agreed.
    Damn. I needed to run into her today. Especially today.

    I'm prepared for tomorrow's visit. I talked to Mom today. She sounded groggy again and said she was in bed so she must have been taking a nap. She doesn't get those very often because of the therapists. She insisted she hadn't had therapy today but I know they're on her ass, I authorized them, as well as instructed them, to be so. I think she's just not remembering it. I hope that's it, anyway. Could be she's constipating, again, too. When will those health care providers learn?!? I can be medically trusted at least as far as most doctors and more than some. Oh well. They'll have to clean it up.

    Talked to another younger woman today about old people stroking out. Her grandmother has been mini-stroking ["I think they call it 'TIA', now," she corrected, both me and herself; somehow, though, "mini-stroking" works better for me] for 10 years. Very little debility, easily overcome, just like Mom, sometimes in a skilled nursing facility, sometimes with out-patient physical therapy. She's 90. She has a history of massive strokes in her family. Mom, luckily, does not, but probably has an unofficial history of mini-stroking. I'm recalling some small familiarities between what was called "Alzheimer's" in her mother and "moderate senile dementia, etiology unknown" in my mother. Grandma, early into her dementia, exhibited patterns that Mom does not: Hallucination, the urge to hide things; the urge to "go" to some unspecified destination to which she never believed she was going when she was actually taken someplace; intense and increasing worry about her memory and mental functioning losses; a definite awareness of a loss of the essence she identified as self. I'm thinking Mom gets "it" from her mother's side because I understand that "mental ability" is inherited from the mother's side and probably refers to brain structure and capability in the vague way scientists have of modifying their language under the assumption that the general public won't understand technical distinctions. As well, some of Mom's dementia (unfortunately, not related to her short term memory), a sort of fogginess regarding activities like reading and doing crossword puzzles, seems to be recovering in the wake of her enforced separation from cigarettes and her decreased need for tanked oxygen.
    I think some of her incontinence, too, some of which I attributed to the demented (used technically) process of losing track of one's semi-voluntary signals, thus, losing control of the related functions, may be taken care of by me being much less aggressive about fluid intake. I'd probably been over-hydrating her since the blood transfusion. I can even remember sort of mini, subconscious movies running in the background of my brain as I "water tortured" her, once again, during the day, containing an instructional video of sorts about how making sure she was well hydrated would help "build her blood". Weird. Anyway, I know better, now. I wonder, it's true, how many more of these well-meaning mistakes I might make and if any might kill my mother, but, then I remember how many well-meaning mistakes medicine has made on her behalf, and I figure, hey, I've got a license and I earned it through hard labor. I haven't yet seriously and immediately endangered her life so, I figure, I've got a good record.

    Anyway, I've got a little more business to do before I settle in for the evening.
    Later.

    Here are my choices, all of which are linked to their sub-posts below:

1. I was wrong. Mom needs to stay at the SNF some days longer than I thought.
2. The facility is dragging their feet on trusting my medical knowledge of my mother.
3. I am no longer harboring silent guilt for seeing her every other day. Today killed that.
4. MCS's relating of her recent sigmoidoscopy finally convinced me that am I am right: No more scoping of my mother.
5. I'm waiting for some software updates to download so this is a good time to post.
6. My mother's sense of taste has returned to the point where her favorite flavor of V-8 juice was almost too much for her today.

    Take your pick. Downloading is going to take awhile, so I might be able to write on all of them. Follow along by number:

1. Today I decided to take my mother for another walk in the facility. Instead of wheeling her I decided to let her wheel herself, since the facility's insurance forbids me from yet supervising her through upright walking and I'd seen her doing this wheel-walk as part of her physical therapy on Tuesday. I'm sure you've seen it. The wheeler gives herself intermittent, needed spurts of movement with her hands attending to the wheels while she walks herself on a surface with her feet pushing off the floor as though she was walking upright. We headed toward the living room to fill her popcorn bowl from the facility's machine. She made it about 2/3's of the way then begged fatigue. I pushed her into the living room and back down the perpendicular hall. When we reached the turn I let her go on her own back to her room.
       Although it seemed to me during her therapy sessions that she'd had much more stamina and much better skill at this I decided that perhaps I hadn't studied her well enough, hadn't paid attention to the "right" cues and that she had done her best for me today.
       Later, one of the CNAs who is very familiar with both of us, individually and as a "couple", came in to query about Mom's bowel movements and joked with her, "I saw you fooling your daughter today in the hall acting like you didn't know what you were doing in that chair, fooling her into pushing you half the way to the popcorn machine and back."
       My mother grinned, sly sure of herself, forgetting, I think, that I was in the room on the other side of her bed. "Don't give my secret away, now," she scolded.
       The CNA winked at me. I thanked her profusely for finding a way to let me in on my mother's scam and at the same time "conspire" with my mother in her deception in order to keep her trust.
       She gave me a "just thought you ought to know" look, indicated to me that is it wise for me to know and to continue to keep in mind that my mother doesn't, for some reason, like or think it's necessary to perform for me and it is important for me to continue to look for numerous ways around her intransigence.
       "You know," I said, "I thought I'd noticed that she was performing much better for the therapist than for me today, but she was so convincing."
       The CNA, who had a merry approach to this whole episode, laughed. "You need to become as tricky with her as she is with you when you take her home."
       Suddenly I realized I was wrong last night, overwrought with missing the suddenly-no-longer-ubiquitous in my life. As long as she is instantly willing to not perform for me by pretending to weakness and lack of skill she needs to be in this facility to take advantage of the desire to please and show off that the professional therapists evoke from her. Not that an out-patient therapist, which I intend to procure when she is released, would not evoke the same enthusiasm and cooperation. But, an out-patient therapist is likely to see her twice a week, if we're lucky; more than likely, once a week and then counsel us to exercise at home. Right. We've gone through this before. Her health is ripening to the point where she has the needed stamina to perform, daily and vigorously (relative to her abilities), for outsiders. It seems to me we should take advantage of this opportunity while we can.
       It was with this attitude that I approached the nursing staff asking exactly what the SNF's goals were for her and how long they expected her to be pursuing these as a resident at the facility.
       "We think she is capable of strengthening to the point that the likelihood of her falling would be very low when she walks around at home and in her community. This is what we're working toward. When we discussed her on Tuesday we figured we may be able to accomplish this in a two week visit, including the time she'd already put in."
       Interesting choice of words "time...put in", I thought. I like this attitude. It is a boot camp attitude.
       A part of me was reluctant to break this news to my mother since I'd been talking to her earlier in the day, before I gave her the opportunity to con me, about how "a week and a few days", one of the Charge Nurse's pronouncements after careful evaluation of her condition when she was admitted, including an extensive physical examination, was almost up and maybe she'd be released around Monday of next week. We'd both panted at this possibility. When I broke the news to her of possibly another week with release maybe next Friday or so it was after she'd not only conned me but I'd been let in on the con. Because I knew she would not only understand the truth but it would make an impression on her, when I told her I also mentioned that if she went home earlier than this short term stay allowed she'd not be taking advantage of the extra physical strength and skill she'd recover from being allowed to show off for therapists. I reminded her of how, even after almost a week at the facility, she still insisted on cutting back her performance for me and it would be a shame if she didn't achieve as full recovery as possible in the time Medicare/TriCare allow her simply because she knew how easy it was to pull one over on me.
       She looked startled, rather like a kid having been caught red handed. "I suppose you're right," she conceded.
       I will continue to remind her sumptuously throughout every day I'm there and with every phone call I make to her that this is short, short term and a magnificent opportunity; that it is her job; that it is boot camp for a more satisfying continuation of our life together. I'm also not shy about reminding her, often and very explicitly, how much I miss her when I'm at home, how much The Little Girl misses her, how I think about her sitting in her room at the facility and me sitting in our living room and probably 'watching' the same TV show in the background but not really paying attention to it, her doing her crosswords, me probably on the internet entering "stats", writing about her or her and me, and it makes me very sad. I want her to be reminded often of the extent of her importance not only to me but to her pets and to the identity of her home. She has a tendency to sometimes think she is not important, a hold over from generational messages. I want to make sure this thought habit is contended as often as possible.
       So I'm preparing for another week of commuting, planning business in both places and carrying it out, paying a few more bills, and last because it is the most important, making sure my mother considers this SNF stay as a radical turn in but still a continuation of our life together, a significant blip, but a blip, nonetheless.
       Funny how crises have a way of reminding one of just how much more one can gracefully take than one thought...how much further one can go...and how much one lusts after the thought of going there.
2. Blood for another CBC/BMP was drawn early this morning about the time I was thinking, "Oh, okay, the alarm just went off, I can sleep for a few more minutes." The results of the CBC were at the nurses station a bit before noon. The BMP wasn't available, yet. Her hemoglobin was 9.4, the same as it was on the 9th. Three of the ranges, Red Blood Cells, Hemoglobin and Hematocrit, were lowered to ranges I prefer to use with her, which was nice. Her results, though, had barely budged. Immediately I thought, they didn't take me seriously on the Niferex.
       I brought the results and a reminder of the Tuesday discussion of my mother's recurrent anemia to the Nursing Supervisor's attention and asked to see if the Niferex-150 was being given, as, I said, if it had been started on Tuesday her hemoglobin would have been up at least a couple 10ths of a point, probably more. The chart indicated that it had been first administered this morning. I didn't ask why. I knew why. They needed to make sure my analysis of the situation could be trusted, so they did it their way by consulting a blood test first.
       I hope these episodes of me not being trusted or listened to about my mother remain mostly benign experiences for her; barely noticed, not pondered. I'm sure there will be more.
       As it turns out although my mother thought she remembered drinking V-8 juice yesterday the evidence revealed that she hadn't. An overheard conversation between her and a CNA revealed that she had eaten a good amount of popcorn yesterday. So, I'm not being taken seriously on this issue, either. Well, they are the ones who will have to clean up.
       I was pleased to note, however, that they did heed my passed on advice from a couple of doctors that she not be administered anything to control her blood sugar other than 10 mg glipizide X 2 unless she shot over 200. I think the only reason this was instituted was that the medical director agreed that he doesn't like metformin for his elderly patients. In essence he wasn't recognizing my authority in such matters. I take what favors I can get, though, for whatever reason they are offered.
3. Knowing that she is still in high performing mode for the therapists at the facility and still in low performing mode for me, I am encouraged that visiting her only every other day is the right thing to do, despite how hard it is on both her and me seeing her experience loneliness and knowing it is not an easy emotion for her to deal with, knowing it is not just her body that is getting somewhat stressful therapy. If I was ever feeling any guilt over my schedule, and I think I was, the guilt is gone.
4. Without going into excrutiating and distasteful detail, MCS had a routine, "over 55" sigmoidoscopy a few weeks ago. She described what it felt like, underlining her perception that it was "extremely" uncomfortable, enough so that she involuntarily "moaned". She confirmed that there were, indeed, many times when her ability to cooperate with the internist who performed the procedure was crucial. My own bowels cringed at what the colonoscopy must have seemed like to Mom, how uncomfortable it must have been and how handy that her horrible short term memory allows her to dismiss it as though it had not happened. I am now convinced that Mom's internist was absolutely right (and absolutely surprised, as well) that Mom's colonoscopy was "torture" for her and that Mom should not ever be scoped again, certainly she would never consider scoping Mom again.
5. I'm still downloading software updates. There was a mess of 'em.
6. Deciding to make sure that she had at least some V-8 juice once every other day, if that is all she's going to get, today I poured her a cup of her favorite flavor, Picante Mild, to drink with lunch. If you are a fairly regular reader of this presentation or you just happen to know my mother well you know that she has, over the last several years, exhibited a decided preference for spicy, the hotter the better. She has been known to happily eat jalapenos out of the jar. She loves straight horseradish and will sometimes forget she has a pile of it on her plate as a condiment and simply eat it with her fork like cottage cheese then become indignant when I remind her of its original purpose. She has considered the spicy V-8 juice "good", but has, in the past, not been sure whether it was hot or not. Today, the "picante" singed her tongue, much to both her and my surprise and my delight. She will, I think, continue to enjoy the flavor of most spicy stuff so I'll see if I can't cook with hot spice in a way that pulls out some of the heat but leaves the flavor. It will also be refreshing to cook with more subtle flavors. The only problem her recovering taste presents is that she also noticed today how bland the facility food is.
       "I told you, Mom, on Sunday when I had one of their 'Sunday Dinners'. It's very bland. Filling, if you aren't offended by the idea of eating it, but bland. And, what is it with all these potato side dishes?"
       "I've never cared much for potatoes," she confirmed.
       "Well," I reminded her, "you used to always order a baked potato with sour cream, chives and lots of butter when we went out as a family when I was a kid."
       "Do you see any sour cream, chives and butter to speak of here?"
       I laughed in agreement.
       Today the potato side was a couple of broiled (or something like that) red potatoes with skin which probably would have been good if they'd been marinated in ranch dressing mix or even a combination of herbs and salt, dipped in olive oil and rolled in the spice mix before "broiling". How hard and how expensive could this taste-ensuring procedure be?
       She isn't a gravy person either, but "your father always wanted gravy," so she made a flour "gravy" only he would eat, usually a beige mush with suspicious lumps and bits of dripping meat. Thus, she and I never developed a taste for gravy.
       I bring her stuff here and there but so far she's declined my offer to get her a fast food something. With her improving sense of taste, she may be taking me up on my offer, soon.

    Well, software is still downloading and I'm getting tired. I think I might pause the process and go to bed. No alarms in the morning. That'll be nice.
    Later.

...that it is close to time; that we both need her to be released from the facility soon. I know they take good care of their patients, I know that the work she is doing there is important and I know, tonight, that it is almost time for her to be released.
    Her skin needs to heal from the necessities of a facility, which don't allow for daily baths and interim washings, for changes of underwear as often as I see to it that she changes, for slatherings of lotion whenever and where ever she needs it rather than when someone can get around to it.
    Her mind needs to be allowed to sit with mine again during the day, in the evening, exchanging thoughts, glancing knowingly at each other when we both notice something, relaxing in the comfort of assured love rather than paid cheerfulness; which is not to say that paid cheerfulness isn't genuine, but, well, it isn't what my mother and I have together.
    It's time for us to test our ability to motivate her at home within the well-being of our familiarity with one another; to return, with a slight skew of the eye caused by our separation, to our disagreements, to discover where and how we'll now travel with one another.
    It's time for us to be together again, I can feel this flowing between her and me and I know it is time. I don't want to short circuit any good that the rehabilitation is doing but I don't want to short circuit the part of her spirit and the part of mine that depend on one another and keep us firmly dedicated to living separately and together.
    We've spent enough nights apart, enough days apart. It's time to focus this rehabilitation on a successful end.
    I'll speak to people at the facility tomorrow. Time to assess her progress and direct her back to our home. I don't expect that she'll be released tomorrow or even Friday but I'm hoping soon, early next week, perhaps, although I don't know, maybe the weekend. We'll see what the people at the facility say.
    Later.

    The unexpected storm this afternoon was a good time to do this. They are all listed on the Mom's Tests.
    I talked to Mom this afternoon. She's beginning to sound lonely and is definitely ready to come home. I promised her that I'd question those in charge of her care at the facility tomorrow to find out how she's progressing toward her goals. I'm anxious for her to return, too, and I cautioned her that it's also important that we take advantage of this opportunity for her to strengthen herself. At the same time, the tone of my voice, I noticed, is changing when I talk to her. I'm ready for us to continue here at our home in Prescott. I'm curious to see how much she is motivated to strengthen herself at home by sleeping somewhat less and moving around and out somewhat more. I trust the therapists' and the medical director's opinions on her renewing suitability for her normal life but at the same time I'm ready for that normal life to be reinstated. I'm being very careful to continue to assure Mom that this stay is short term and temporary, but, you know, I think sometimes she's not sure of that.
    She reported that she is eating popcorn and drank a can ("not a whole can," she informed me) of V-8 juice so I guess I'm being taken seriously by the staff. Good. It's important on this particular bowel issue. As well, she's active enough at the facility so that her bowel movements should, if she is capable of detecting them, signal her to the bathroom before they begin and should be fairly easy to evacuate.
    I cautioned her as well to be sure and call an RN, LPN or CNA to help her if she decides to move from one place to another. I reminded her of where her call button is. She isn't the type to use it much, though. I noticed yesterday that they've taken away her bed monitor so they must be more sure of her as far as her moving around on her own is concerned. Those damned hospital issue beds and conveyances, though, are such clunkers with all kinds of attachments within which to tangle oneself.
    I miss her on the days I'm up here even though I know it is best for both her and me for me to stagger my visits. I think this SNF stay is good for both of us. I'm now beginning to understand the subtle emotional consequences of nursing homes for both the patients and their loved ones. I'm now even more determined to do everything in my power to take care of Mom in her home right up to the end of her life, if possible. It's not that this temporary stay is unpleasant but there is an insinuating tension surrounding her welfare that is not present when she is here with me even during the worst of times, even when I'm doubting my ability to "do right by her" as I care for her. The most important part of loving someone, I think, is simply knowing what that person's state is, regardless of the quality of that state: Being able, at will, to check in on the person, listen to them breathe, subconsciously absorb the miniscule detail that reports on how they are, what the person's states of body, mind, heart and soul are at any particular time. I know that long term professional care facilities can be a great relief in many circumstances. I hope that those circumstances skirt our home for the duration of my mother's life.
    Again, here I am sitting on the floor, writing and thinking about my mother, who has become the love of my life, wishing I could wrap her crumpling frame in my arms so she will know she is well loved and well protected.
    Regarding the conversation the Facility Administrator and I had about the commercials devoted to the recognition of elder abuse: Since my stumble into over hydrating my mother I've begun to look askance at the bluntness of these commercials. I understand that heightened awareness is a good thing right now in our society, considering how little aware we are, generally, of our Ancient Ones. I mentioned the commercials to the FA, though, because I wanted to address one point.
    "What makes me uneasy about these commercials," I said (paraphrased, although representative of what I actually said), "is that I've always been aware of how tenuous the dehydration issue is with the elderly. Over the last few weeks I discovered I'd been accidentally over hydrating her. It was, unfortunately, easy to do. Now I have brand new guidelines about how to judge her hydration level, guidelines which, frankly, fly in the face of everything I knew. Such a fine line exists between over and under hydration and it seems that even those of us who are trained and meticulous are constantly crossing back and forth."
    The FA responded by telling me that the commercials anger her. She explained that they make it appear as though the hydration issue is an easy one to negotiate.
    I confirmed her perception and told her about how I thought my mother had been dehydrating while on a saline drip in the hospital during her stay for her blood transfusion. Now I'm not so sure. I went on to report that one of her doctors this time around counseled me to have her "drink when she's thirsty". "She's hardly ever thirsty, though," I added. "My mother's never been a water drinker, never. I've been, but not my mother. I didn't get my taste for water from her, I got it from my dad." Added to this has been the difficulty of factoring in her continuing weight loss when trying to recalculate her tenting scale so that I neither over nor under hydrate her.
    We talked about bed sores and pressure bruises. I related my own experience involving the typical pressure bruises on the inside of my mother's knees, particularly her left one, because she insists on supporting herself on that knee when she sleeps. "I even tried knee pads to prevent the bruising," I told her, "and she'd wake up in the morning having taken off the pads because they were uncomfortable for her when she was settling into position."
    The FA nodded, knowingly.
    We talked about my growing medical assertiveness, my habit of learning about and controlling her medication dosages on the spot as we go and my frustration over not being taken seriously in this effort by health care providers.
    She told me about an incident that occurred some years ago when she was 23. She was visiting her grandfather who was receiving treatment in some sort of facility, I can't remember if it was a hospital or a residential facility. During the visit an attendant brought in an IV bag on a stand and began the process of hooking it up to her grandfather. Quite by accident the FA noticed that the name on the bag was not her grandfather's. "At 23," she said, "I wasn't nearly as assertive as you, or as I am now but I immediately alerted the attendant. She took note and left to retrieve the proper bag, mentioning that "it's all the same stuff, but he should have his own bag."
    Whew, I thought. All the same stuff. How, exactly, could that attendant have been trusted to be reliable, especially considering the mistake over to whom the bag had been prescribed? Suppose the FA hadn't noticed and the attendant had been wrong about the ingredients in the "stuff"?
    Take note, Medical Establishment. You have a long way to go before you deserve the trust to which you think you are automatically entitled by dint of your training and your financial outlay. One way to work to achieve this trust is to heed those of your patients and patient advocates who are as dedicated to preventing medical mistakes by their observations and questions as we are asked to assume you are.
    Time to fill the gas tank up for tomorrow. I don't know whether I'll be writing any more tonight. Either way, I'll be back...
    ...later.

    Instead of me listing them all here (there were a jillion), you can go to Mom's Tests and you'll find them all listed, from August 1st - August 9th. All I have left to enter are her urinalyses, none of which are remarkable except for the Urine Osmolality which indicated over hydration. Her Sodium Urine Random was good, though, so she was on her way back to normal hydration when the sample was drawn.
    Some of the tests, like the Serum Osmolality, are connected to determining whether she was over hydrated, which she was on 8/1/04. Some, like the Probrain Natriuretic Peptide, are connected to determining the presence or absence of congestive heart failure, which she does not have. Others were done to rule out types of anemia. Others are connected with clotting factors.
    There are some bedside glucose tests which I may enter in Mom's Daily Tests and Meds, then again I may not. It seems that both the hospital and the SNF are not as good at controlling her blood glucose through diet as I am. She seems to be getting insulin shots on a pretty regular basis. As well, they were and are insul-ating her whenever her glucose strays well above "normal", despite the fact that I've been instructed not to worry unless she goes above 200. But that's okay. She'll stay within a good range with their tactics, as she will with mine, and a few days of lots of insul-ation shouldn't hurt her.
    Yesterday, because of the 1.2 drop in her hemoglobin from its stability in the "10" range, I spoke to the medical director of the facility about reintroducing Niferex-150 to her daily meds, despite the hospital's decision to (or negligence in) not include(ing) it on her list of daily meds for the SNF. He agreed that this would be a good idea. The nurses and CNAs cringed. I've been hearing the argument for too many days from them that they don't want her on the Niferex because it constipates her and then they have to administer a laxative. So yesterday I took the day nurse and the nursing director aside and explained that I've had very little problem keeping her regular on "all that iron" (including the Niferex-150 and 36 mg of Iron Protein Succinylate per day) since soon after her blood transfusion in early June. Aside from telling them that she eats a diet very high in fiber at home (which is decidedly not happening at the SNF), I gave them the following instructions (within, I might add, the doctor's hearing; not purposely, but happily): One 11.5 oz can of V-8 juice per day (which I provided to the SNF) and snacking on popcorn (which I provided for the weekend, since their popcorn machine isn't used over the weekend). I also provided a large, marked bowl for her popcorn and, as per the nursing director's instructions, had notes added to her chart regarding both. I also added a note that if they should consider her constipated, it is best not to administer the recommended laxative dose of Phillip's Milk of Magnesia but, rather, half that or the antacid dose, depending on how many days they believe she's been constipated.
    Assuming that they are amenable to taking direction from me (which, typically, most professional health providers aren't, but, you know, that's their problem unless they create a really uncomfortable problem for my mother by not listening to me), these tactics should solve their problems. One of the LPNs tried to nix the V-8 juice because of the fluid restriction upon which they have my mother. I pointed out that she is not even consuming liquids to the limit of her restriction and, furthermore, they might keep an eye on whether she is accidentally dehydrating herself because of this. Another one tried to nix the V-8 juice and popcorn because of her caloric restrictions. I responded that V-8 juice has only 70 calories per can and at one can per day they need not worry about this. I didn't respond to the popcorn "problem". I figure, she can certainly use the extra calories, they aren't paying attention to the extended glucose range for her (which, in fact, neither did the hospital, god, I'll tell you, get a bunch of health care providers together and they run rampant all over charts and instructions) and they're playing around with insulin, anyway, so they can do whatever they think is best with her as far as the popcorn is concerned, which will constipate her, upon which they will, no doubt, administer the maximum laxative dose of Phillip's Milk of Magnesia, upon which they'll have another busy, messy 6 hours or more on their hands. But, you know, again, that's their problem. They don't have to listen to me and they don't have to think, either. Some of them do listen, some of them do think, but, I believe that the non-alternative medical-industrial complex encourages (in many cases, with laws and the threat of law suits) a type of soldierly obedience which often stands in the way of non-alternative medicine's ability to treat patients with personal dignity, respect and in line with what is really "wrong" with them and how they really need to be treated.
    I'm not sure when I'll get around to entering the urinalyses. I've got some cleaning and fixing up to do here, some of Mom's clothes to launder, some business to handle, some movies to watch that are due today and I've got an early day tomorrow. I made a 0730 appointment in the Valley to have the oil changed, a lube job, tires rotated and balanced and the belts and hoses checked in one of the cars before I arrive at the SNF.
    I'm doing well, as well, at least, as my mother. My spirits are high. She's working hard and so am I. The Little Girl is still crying in Mom's room in the middle of the night and crying at the door when Mom doesn't come through within seconds after I enter the house but I understand how she feels. It is very odd not to have Mom here.
    Later.

...at her job of physical rehabilitation at the SNF. Her schedule is Occupational (upper body) Therapy in the morning and Ambulation (lower body) Therapy in the afternoon. This afternoon there was a slight glitch. After lunch while I was in the bathroom she decided to lay down for a nap. When I returned she was sprawled on the bed, having gotten herself out of her wheel chair and into bed on her own.
    "Mom," I said, "I'll bet you'll just get settled down and they'll come collect you for your afternoon therapy sessions."
    "I'll rest until then."
    "Okay, but I'll bet you won't want to get up when they come and, you know, you have to, it's your job."
    "I will."
    Less than a half hour later her afternoon therapist arrived. Mom hadn't slipped into sleep yet, but she was obviously comfortably headed there. I told the therapist that I'd warned her about therapy and that she couldn't get out of it with a nap.
    The therapist worked on her for a few minutes with me in the room helping. My mother didn't budge. Didn't even open her eyes. So I slipped around the door out of the room. Still, I heard the therapist having difficulty. So, I came back in, wrapped my arms around my mother's shoulders and gently "whupped" her up while the therapist moved her legs into position over the edge of the bed. I broke my rule a little that I wasn't going to interfere between therapists and my mother but I figured I was making up for yet another broken rule, that I would exit the room immediately when therapists entered. Today I didn't and the therapist, Mom and I all paid for it by Mom thinking she could get away with sleeping through a scheduled session because I was there and her memory of me, alas, is that I often give in to her when she's hard to get going.
    She finally trotted off with the therapist, with me, once again, telling this therapist (one to whom I hadn't talked), "Don't ever take 'no' for an answer from my mother. She can always move a little bit."
    The therapist reported that she had a long and successful session. Her strength increases daily, thank the gods. I told the therapist that, now that my mother is "into" the routine, when I'm there on Thursday I'm going to attend her therapy sessions so I can learn her exercises and we can continue them at home. The therapist encouraged me to do this.
    Later, when we were alone in the room I said, "See, Mom? Moving gives you [universal] energy. You thought you needed a nap and now, here you are, properly moved, and you have no interest in laying down (she didn't)."
    She glared at me. "I suppose you're right."
    "I'm going to remember this when we get home, Mom, and remind you of it every day."
    "I'm sure you will," she said, continuing her comic glare.
    "I think we should do more scheduling of our days to include activities, movement, you know, the stuff that keeps you up."
    "What about scheduling naps?"
    "Of course we'll do that if you decide you need a nap. I know you get tired. But I think you'll be tiring less often now."
    "We'll see," she said.
    We will.
    More good news. No more metformin. Several of the physicians who've consulted on my mother and to whom I've spoken don't like metformin for their elderly patients (wonderful, I say). I've been given new guidelines for her blood sugar; glipizide only and don't worry unless she goes above 200. I won't have much problem with this. I've also been told to administer the glipizide about half way through the meal instead of a half hour before, which I understand and had often wondered about. I'll experiment a little with this and see which way gives me the best results. As well, I've been given new parameters for Hemoglobin A1c: "in the range of 7" which I am interpreting to mean 7.0 - 7.9. These are not ranges that one wants to heed if one's Ancient One has been a diabetic for a long time. Mom has been diabetic only since 1999, when she was 82.
    The last of the good news is this: It has now been a little over two weeks since Mom has had a cigarette. As a result her breathing treatments have been cut to nothing, she is not on oxygen 24/7, when she is she is normally dialed to 1/lpm to .5/lpm which brings her in at Blood Oxygen 97 at rest. Today during her afternoon therapy she performed without oxygen and her Blood Oxygen came in, during the session, at 93/94, which is what one could expect from a normal breather (somewhat higher in an athlete). My guess is that she will probably continue to need oxygen up here but at much lower levels and much less often, assuming that we commence a non-smoking life-style when she arrives home. I'm going to give it all I've got. She is no longer thinking about cigarettes at the SNF, has dropped quite a few of her paraphernalial habits connected with smoking and I'm hoping that we will be successful in this. It amazes me how quickly her aerobic ability is returning after just two weeks. As the nurse who checked her into the SNF said when I told her what was going on with Mom's smoking and how her oxygen is being cut wa-a-ay back, "It's never too late to quit smoking." For awhile I think the challenge will be to keep Mom busy enough so that she doesn't think about smoking here at home. And, of course, I simply won't have cigarettes around. Keeping her busy will be important because one of my previous challenges when I was attempting to modify her smoking habit was that she'd "take to bed" when she couldn't smoke. I think it will be easier this time but I'm not expecting miracles. I expect some pitched battles about smoking on the horizon. I also expect that, after much repetition, it will finally sink in that she feels better and can maneuver better when she's not smoking. Being motivated to stay up, of course, isn't necessarily a plus in her case as she loves to sleep. But if I can keep her busy I think we'll have this licked.
    There are many good reasons for her to not take up smoking again when she returns home, not the least of which is that her heart is still checking out very good, no signs of congestive heart failure; just the opposite, in fact. Being able to wean her off oxygen, while it may go more slowly up here (I may keep her on it at night and put her on a 1/lpm dose when she's moving around for awhile) will also be a good thing. It will allow her much more mobility. I'm going to stop using cigarettes as medicine when I want to raise her blood pressure or stimulate bowel movements. We'll figure out other ways to do those things.
    Two people at the facility commented on my aggressive support of my mother's therapy today. One, the Education Coordinator, congratulated me on knowing when to leave the room in order to allow my mother the stage upon which to perform for others. The other, a CNA I see all over the place at the facility, also congratulated my efforts and added, "So many people let their loved ones lie around thinking they're doing them a favor then wonder why it is their loved one has to stay longer than planned."
    Remind me to talk about the very interesting discussion the Facility Administrator and I had about the recent glut of commercials on TV, sponsored by Adult Protective Services, regarding abuse of the elderly.
    I fed myself coffee, feeling a surge of energy right after I returned from the Valley, and intended to input some of the few tests I have left but I'm beginning to fade despite the caffeine so I think I'll do that tomorrow. Tonight, I just want to sit here and feel good about what is happening for my mother. Old dogs. New tricks. Longer, more active lives. It all works out, doesn't it?!?
    Later.

Blood Test Draw Date: 8/5/04
Blood Test Draw Date: 8/2/04

    The first is a CBC/BMP. The second is a lone measurement for vitamin B12 and folate.
    Now it's time for bed. I've got an early call in the morning. I didn't, by the way, get ahold of Mom. I guess she's phasing out on the phone again. I'm not worried. MPBIL would have let me know after his visit if anything seemed untoward.
    Later.

    I input her first blood test of the hospital visit.

Blood Test Draw Date: 8/1/04

This is the test that indicated her unusually low sodium and cued the neurologist to be careful before assuming typical causes for the TIA. In the final analysis, the low sodium was caused by over-hydration of my mother on my part.
    I don't think I'll be doing any more tonight. Time to try calling my mother again and eat dinner.
    Later.

...are entered, both independently and on the Mom's Tests Table of Contents. The two newest ones are listed below:
Chest View 1: 8/2/04
Electrocardiogram: 8/2/04
    I noticed, by the way, in the CT Head W/O Contrast that the reason given for the exam was "pain". In fact, my mother almost never had pain during her hospital stay, and when she did it was transient and environmental, related to sitting in strange positions on a bed for hours at a time. I remember several times in the ER when she was asked if she had pain, she did not. Perhaps this "reason" is the best one under which to get Medicare/TriCare to pay for that test.
    The overall impression I get from the latest two entries into her imaging history is that, at this time, she has not injured her back although it is more debilitated than before and her heart is good, old but good for its age and what my mother has put it through. Mild heart disease. No reason to expect a sudden heart attack but no reason not to consider her heart a candidate for a "natural causes/old age" death, either.
    I still have several blood tests, some of which are contained in a four test comparison, and some urinalyses to enter. I will probably begin tonight but probably won't complete entry for a few days hence, although you never know, I feel intellectually ambitious and the cool, windy, rainy evening invites this kind of work.
    In case you're wondering, entering the results of my mother's tests, aside from creating a handy history for me, allows me to become familiar with their contents and think about what they mean in the context of all the stats I've recorded. Although it probably seems like tedious work, it isn't. I look forward to doing it and the process always tweaks my 3 dimensional mental hologram of my mother.
    I'm in the process of trying to decide what to have for dinner. I skipped lunch by napping.
    Maybe "another cup of coffee and another" few "piece"s of test entry, tonight.
    Later.

...it was wonderful. I awoke to an impending storm so I've been drinking coffee and entering test results. I'm nowhere near finished but I've entered two of her imaging exams, as listed below:
CT Head W/O Contrast: 8/1/04
Ultra Sound Carotid Duplex - Bilateral: 8/2/04
    Both of these tests relate to the search for reasons for Mom's sudden and somewhat more than mild right side weakness. The overall diagnosis, as I understand it from reading and thinking about these tests, is that Mom is "suffering" slow brain atrophy with no more than normal danger of loose plaque related stroking. No aneurysm or evidence of any. She is simply doing what we cannot yet reliably prevent Ancient Ones from doing: Aging, slowly but surely. She is not, however, suffering her aging.
    I've done none of the business I intended. Haven't even called Mom. I don't think she'll miss my call. I did try to call her, as she asked, last night, but she wasn't answering her phone. She probably wasn't listening for it, may have been asleep, thus she wouldn't have heard it, or maybe heard it in a dream. I hope it triggered images of me in her dream.
    Although she claims not to dream often she does, voluptuously. I know this because of the descriptions of fragments of dreams she relates to me. At least twice a week she awakens remembering a dream. The images can be all over the map but are most often images of houses and people from childhood or from Guam where she spent the most time raising her family and plying her longest career. She still obliquely dreams, of house plans, but not as often as she used to.
    Tests and dreams. Hmmmm...well, expect more posts like this in the next several days.
    I suppose I should check in with the nurses' station. I probably will later. Then again, maybe I'll wait and see what surprises my mother has in store for me tomorrow.
    Later, after more test input, I'm sure.

...met lots of people, most interestingly the couple with whom my mother's roommate lives, her daughter and son-in-law or vice versa. Except for the absence of type 2 diabetes (which both caregivers expressed relief that her mother had not yet developed) and the possible cause of their mother's mini-strokes, their mother's profile is very much like my mother's except that theirs is 2 years ahead of mine. This is the roommate whom both my mother and I decided seemed internalized in a distinctly "dud as a roommate" way. Their mother has been living with them since 1995, one year after I came to live with my mother.
    "She was pretty independent then."
    Wow, I thought. Sounds familiar.
    She also began to exhibit pronounced decline as a result of the same internal physical activity through which my mother has proceeded; "TIAs", which this couple, like me, refers to as "mini-strokes". Her etiology is different than my mothers. Hers was absolutely traced to advanced plaque in the carotid arteries. There is a "roto-rooter" procedure that can be performed to reduce it but their mother turned out not to be a candidate for it for age related reasons. So she continues to mini-stroke.
    I told her that Mom's carotids had utra-sounded fine and that her causes seemed to be small thrown clots and/or episodes of bleeding in the brain in the lower left quadrant. No headaches, no phasing any more than usual, so the doctors have ruled out operable aneurysm.
    The woman nodded. "Throwing clots." She cocked her head toward the Ancient Woman on the bed. "They think she does that, too. How long has it been since the last one?" the wife quizzed the husband.
    "Over a year. How old's your mother?"
    "Turned 87 last week."
    The wife nodded toward her Ancient One reclining on a bed in demi-sit-up position. "89."
    I gathered that their Ancient One was not doing as well this time, or, at least not as well as she has. She was (which Mom and I witnessed and discussed between us, taking it as a lesson) resolutely refusing therapy. She was, Mom and I noticed, a whiner. She asked me to push her call button once when she had it in her hand. I reminded her how to push it. By the time the CNA arrived, which was almost immediately, she forgot she had called or even wanted someone.
    "We told her she had to get strong," the wife continued.
    Wow. Sounds familiar. "Mine's a WWII vet, gunnery instructor in the Navy. I compared this to boot camp for her. It seems to have made an impression."
    The woman, in the most unexpectedly kindly of ways looked at me as if to say, "Yeah, that should work a time or two."
    A moment of silence while she and I studied her mother.
    "She tells me that they don't come to exercise her enough," the daughter said.
    "They exercise my mother a lot. Except today."
    She looked back at her mother. "Some of it could have to do with lack of motivation this time."
    I didn't mean to tattle tale but I realized, in her position, I would want to know what I divulged. "She refused therapy Friday afternoon. I was here. In her defense, she really didn't feel good, that was obvious, and the therapist mentioned their earlier work out session so I know she got some movement in Friday, just not Friday afternoon."
    The woman nodded. "Good," she said. She shared some much needed information about inexpensive, easily installed set-ups for home use that extend the capabilities available to an Ancient One.
    I was very grateful. My mother has been judged a "high fall" risk, of which I've been aware but didn't know fall risk is categorized. Mom is very lucky that she isn't braking bones.
    I guess the way my mother is passing through the last era of her life is typical. I'm not surprised. I can see, from this couple, that it definitely helps to have family involved in actively incorporating an Ancient One. I sensed that the structure of their relationship with this matriarch was different than us with ours and is no less close and loving and compassionate and, as well, stressed out by demands, not the least of which is that both partners work. She confided that they had changed their work schedules so that a responsible, known, trusted adult was always with their mother. Teenagers were a great help.
    I remember the charge nurse on duty the afternoon my mother was checked in saying that Mom's roommate was "feeling bad" right now but was "alert, which is good."
    When I mentioned that my mother's drastically reduced short term memory is so bad that it makes her a poor candidate for all types of procedures in which the patient must "cooperate" with the physician-proceduralist, the daughter laughed and entered into a private joke with her mother about her mother's short term memory which proved my point and heartened me. My mother and I are not the only ones who share "memory" jokes. Her mother, although older than mine, obviously is just entering the period where she is aware of losing her short term memory and worries about it. I assured the daughter that Ancient Ones, if well cared for, eventually stop worrying.
    This woman's SNF visit, which apparently is due to end today, was the last of three spread over the last 3 years. I realized out loud that this may be the first of intermittent visits for my mother.
    The woman nodded. "Especially if she falls and breaks bones."
    "So far, so good," I mused.
    "Good," my companion in caregiving answered. "You're lucky."
    Yeah. I know. thankyouthankyouthankyou.
    "I was hoping she wouldn't decline, she'd just suddenly stop," I said.
    "Yeah, I know," she said, echoing me from a distance.
    "It's not so bad, though."
    The woman smiled at me. "No." Her voice was flat but strong. I knew she meant this. As do I.
    Mom had begun to arouse from a late afternoon doze. The night nurse, concerned about her impacted bowels, decided to try the "gentle method", a laxative dose of Phillip's Milk of Magnesia. The charge nurse and I had talked some hours earlier about my mother's lack of bowel movements in the hospital. It's nice to know that attention to Ancient bowels is a primary concern of professional health care workers. I wish that I had thought to ask at that time if they were going to attempt a laxative on her. I wish the nurse had discussed the possibility. I would have told them, use the antacid dose on her; that'll do the trick and there will be a possibility that she will be able to warn you in enough time to get her to the toilet. In fact, early yesterday morning she did make it to the bathroom with the help of a CNA. And, had a bowel movement, a quantitative one. But, she also had three to four days of iron-soaked shit (anyone who has dealt with Ancient Iron-soaked Shit knows why I am elaborating). So she spent yesterday morning shitting all over the place without advance warning. When I told this to the evening CNA, explaining why she was nodding off early, the CNA laughed and I was delighted to join her. Bowel incontinence. That's what the day nurse called it, while a good half the floor staff had their hands stuck in shit up to their elbows.
    The woman who partnered with her husband in giving care to one of their matriarchs had the look about her that told me she had encountered many such incidents in seeking and managing appropriate medical care for her mother. They also lived in the west central rural area of Arizona. I warned her against seeking serious medical help in Prescott.
    "Yeah. I know. We've got relatives up there." She was not surprised that my mother and I were stalwart in our commute to the Valley for health care.
    We shared a look that acknowledged that both of us knew that this was one of the advantages of one's Ancient One "going slow."
    Later in the day at a much needed get-away visit to inform our informal (pun intended) family, MCF, et al, about Mom I let my hair down, some. One of my acquaintance-type-friends, someone I'd like to get to know better but we don't live close and have very involved lives from each other's perspective, is a long-experienced nurse, both here and in Canada. She had an interesting perspective on nursing homes and SNF "visits", honed through experience, to which she referred as "doing my time". It was "unlike any type of nursing" she's experienced, before or after. I got the sense she liked it at first. She referred to her stint, though, as "heartbreaking". She has known, since the day we first met a few years ago, that I am my mother's full time caregiver. She approaches me with a quiet expression of assurance in the dignity of what I am doing, knowing the task in detail, physically, intellectually and emotionally.
    Another experienced dialyzer told me she'd heard some stories about my mother's facility that they drug patients in the evening. I looked at our mutual acquaintance, the RN, and said, "MCF tends to over dramatize, does she not?"
    The RN nodded vigorously. "Not anymore, not for a few years, if they haven't wanted to get their asses kicked."
    I think this is true. I did not question the night nurse Saturday about my mother's blurred speech with suspicions of malfeasant attempt. Although the possibility occurred to me, and I asked if they might've given her "something", I figured they'd have had a good reason for it and would have tailored the dosage to my mother's requirements. As well, if she hadn't been administered anything I needed to keep her tired slur in mind for diagnostic purposes, note the date mentally in case of future occurrence. And, it is also true that MCF over dramatizes. I'm satisfied with the informal conversation about the place, of which I've heard much, sometimes in the lobby of the facility where leaving caregivers are giving incoming caregivers advice. The facility has a good reputation and does not seem to have a vested interest in keeping short term residents longer than necessary.
    Mom and I were playing Sorry in the West Wing Day Room and were beginning our second round (I won the first) when we were asked to vacate the room to make way for the "Restorative Eating" group. I asked the director of the exercise what "restorative eating" is.
    "This is where meals are served to those who have to redevelop eating skills they lost due to strokes, you know..."
    I told her I didn't know.
    "Well, teaching them how to use utensils, switching sides, learning how to swallow..."
    "Really?!? You can rehabilitate that?!?"
    "Oh, yes. People coming off feeding tubes sometimes need to reeducate their throats..." she raised her chin and stroked her own.
    "Hmmm..." I said, rolling Mom out of the room, "it's nice to know that kind of rehabilitation is available."
    "When a person can relearn how to feed herself (she was referring to the first Restorative Eating Resident to arrive by self-mobilized wheel chair to lunch, whose 106th birthday was yesterday, "their interest in life often revives."
    "I can imagine," I told her, thanking her for the information.

    Now that I know my mother is semi-aware of her phone, I'll call her a couple of times today.

    When my mother was bathed Saturday one or more of the CNA's styled her hair back culminating in a pastiche bun at the top back of her head. Very sleek and chic. This style completely changed her presentation. It brought her sloped forehead, well formed nose and high cheekbones into attractive relief and gave her the appearance of height. She's spent her life (not sure whether on purpose or inadvertently) softening her distinctive, noticeable profile by keeping her hair jaw length and curling it or softening her "high, teased bun" preference of the last several years with a front, teased, softly curled bang. I realized yesterday, that she is much better represented in her Ancient One Face if she allows her magnificently understated bone structure to draw attention away from her wrinkled cheeks, a physical feature which still worries at her like a miniature Doberman. The new style highlighted her profile to perfection and highlighted the physical stamp of her meticulous determination. I decided on the spot that Mom and I would try doing her hair this way using her two good pastiches and creating a cascade of short curls over a sleek, slightly teased for height under"growth".
    I'm noticing we're beginning to "miss" clothes at the SNF, even though I specified that I am to take home her laundry. I can't locate her yellow flowered night dress, her peach knit shirt with embroidered flowers at the neck, her yellow "Pagosa Springs" t-shirt with embossed horses and one of her favorite pairs of blue, light-weight slacks made out of one of those crinkly, semi-shiny materials. As well, she was one (new) bra short, yesterday. When asking after them I was told they were probably put in the laundry mistakenly. So I'll check tomorrow when I return. Other durable goods all seem to be accounted for. I hadn't actually (perhaps naively) given any thought to the oft heard warning that nursing homes and skilled nursing facilities are great places to "lose" things. I'll just keep up on it. I provided her floor with a detailed inventory, made no apologies for the amount of stuff I hauled into Mom's room and we moved in with the air of people who trust their environment to preserve their belongs. I think this will work out except, well, I noticed the day we arrived that while I brought in about 1/3 of my mother's wardrobe our roommate had been provided with one day dress and spent most of the day, every day, in a SNF issue robe. However she also is not up as much as my mother. As well, my mother insists on "dressing" for the day, mostly. Even if she decides to lounge she wears one of several favorite "night shirts" or dresses and a good looking, embracing house coat. Her habit of dressing for a laid back day may be unusual. I did notice that of the many chair bound residents who roam the halls, all are dressed in obviously private wear before they venture from their rooms unless hospital issue pieces are more amenable to the therapy in which this one or that one is involved. We arrived, however, with open intentions and well-documented (the inventory with which I was very careful) trust, the type of which enhances business relationships, implying only the highest of intentions to those who helped us move things around in the room and dump boxes to get stuff out of the way. I made sure, as is only prudent, that I left nothing, nothing of any value there except both pairs of her needed glasses and her hair piece.
    Visit-wise, MPS and her family are covering visits by ones and twos and threes on days I'm not there. MPBIL will be stopping by to see her this afternoon. I hope to hear him confirm she has been offered therapy at least two times today. As well, I need to call the administration office and answer some questions about Mom for insurance purposes. I will be spending the day and night here in Prescott. My intention is to do some minor business today and some more tomorrow in the Valley, so I'm planning on arising very early in the morning and getting to Mesa before the rush hour starts, no later than 0630, hopefully somewhat before. Every minute will count tomorrow and so will avoiding as much of rush hours, here and there as possible.
    I'm resting well here now. The cats ground me. So does being in my own surroundings.
    Depending on how much I allow myself to relax I may start inputting test results from the hospital. Oh yeah, that's one thing I want to mention to the SNF administration. I want a copy of her chart on dismissal, including her Mesa PCP's involvement as well as her hematologist's, who has an office across the street from the SNF at the Chandler branch of the hospital-industrial-complex in which my mother is usually treated. That might be convenient.
    I think I'll make myself a second cup of coffee and some breakfast and make decisions about the day. Start a laundry before it gets too hot. Consider designing and redesigning the day.
    I was very careful to quadruple bag the clothes on which my mother shat yesterday. I thought about what it would be like to smell her from that perspective all the way home in the cab of the truck and thought, no, nope, nope, nope. As it is the laundry smells pretty much as it did before my mother's departure (although I don't have to do it every day); urine and shit soaked.
    Oh, yeah, remind me to tell you the good news about her type 2 diabetic profile. I'm dancing on the ceiling about this one.
    Later.

    I discovered last night that Starbucks opens later up here on Sunday than other days so I rescheduled my leaving time to coincide with their opening. I depend on their triple shot "vente iced mocha valencias non-fat no whipped cream to go" to get me around on travel days, even after drinking morning coffee here.

    The following are excerpts from some e's I sent to MFASRF previous to taking my mother down the mountain for health care last Sunday. The excerpts continue through yesterday. They detail my intellectual and emotional journey immediately prior to and including the first few days of this new turn in my mother's and my adventure together. I was on a roller coaster previous to taking her down. I think this is important to note. There are, as well, a few bits of information that might be valuable to someone else traveling a similar road:

8/1/4 - 0143
    You're right, there is no way to "make" my mother's stage an easy caregiving task. Today was especially bad. I waffled endlessly over whether to march her back into the ER. She'll probably end up in a hospital sometime this week. Since I'm pretty sure she's still mini-stroking, I think she needs some in-house skilled nursing care of the rehabilitative variety. Medicare/TriCare requires three days of hospital observation prior to commitment to a skilled nursing facility.
    This type of SNF commitment is not of the permanent variety. At one point today I did consider permanent nursing homes because I became exhausted earlier than usual. I'm feeling better now but a lot of changes are going to have to be made to our situation, quickly, or I fear I will not be able to continue. I'm hoping that short term (could be up to 120 days) SNF care will take care of some of those requirements but it won't take care of all of them.
    Today I found myself wishing that she'd die before I had to do this. My will is so tired I fear I won't be able to be "magnificent" in handling the hospital this time. I'm even considering dropping her off and letting them have at her with the stipulation that they are not to scope any of her tubes or needle her bones. If she's hospitalized in Mesa, which I'm pretty sure she will be since, at this point, I trust the medical circus down there more than the medical circus up here, I'm not going to stay. I'm going to commute from Prescott because, and this probably sounds weird, I am going to need cat contact every day. I've told Mom this. She's okay with it.
    I don't know if I'll be able to finagle a "situation" in a skilled nursing facility up here. If not I'll commute, probably not on a daily basis but every other day. In that case I will charge MPS with keeping an eye on her care on the days I'm not there.
    If Mom collapses again and ends up in the ER here before I can get her down to Mesa (which I plan on doing Tuesday) then I bring out the big guns and force this medical community to get its head out of its ass and be honorable.
    Oh, god, I don't want to do any of this, I don't I don't I don't.
    I need to tell you, meant to earlier but the day started hard and didn't let up until a little while ago, I've excerpted more of my e's to you. I seem to write about my mother and my experience of caring for her more clearly when I'm writing to you. In reflection I find myself thinking, yes, that's what I want to say. Thanks for not hitting the ceiling about it. It may happen a few more times.
    I need some sleep. Luckily I'll be waking up (as well as going to bed) in Sunday, all offices are closed. Maybe I can reach some peace of mind about what ever is about to happen in my mother's life, and, thus, mine.
    This is a very dicey world to visit, the World of the Ancient Ones, isn't it?

8/2/04 - 0217
...just to let you know, we are here in Mesa. My mother was admitted to the hospital here. After tonight I'll be commuting between here and Prescott while she's at the hospital. Without wasting sleep time on details (I just arrived at our Mesa house from the hospital), guess what: I was magnificent again even though I didn't think I had it in me. Yet again, my mother's case connected with a doctor sent by the gods, this time a neurologist. I can't believe it. She agrees with me on so many things I've been doing in opposition to other doctors. She even agreed with me tonight when I questioned the ER doctor's order to give my mother an aspirin because it is "typical" treatment for what has again been labeled a TIA. She thinks it's something els, because of something that came up in her blood work today about which I was curious and she agreed that I was right about not allowing Mom to e dosed with aspirin.
    Goddamnit, MFASRF, yea though I walk through the Valley of the Shadow of my mother's imminent death, even though I fear evil, I'm protecting her and I'm doing a fucking good job even when I think I'm not or I don't have it in me.
    I'll write more in a few days probably, but, well, once again I see that what I've been doing is worth it. Furthermore, even when I'm not seeing very well, even when I'm not at all sure of myself, I can trust myself and all the knowledge I've gained.
    Every Ancient One should have someone like me looking after them, at least medically.
    To sleep, to sleep, to buy a fat pig, or, something like that...

8/4/04 - 0720
    I have officially passed "magnificent" and am now cruising in the "fucking magnificent" lane. I'm expecting my "S(uper)C(aregiver) costume to arrive at any time. I understand that the model for which I qualify is not caped because it has one of those instantaneous, Star-Trek type "beam around" com badges. I have a preference for capes but beaming transport is much handier.
    My mother is doing well despite remaining gimpy on the right side. She will, indeed, be released to a short term skilled nursing facility for intensive rehabilitative care, the length of which will be determined by the following goal: To be able to walk 100 feet unaided (I think, although I'm not sure, "unaided" includes the use of a walker). She is doing so well and loving so much her independence at the hospital that I may drop back my planned visit schedule at the SNF. I have MPS's cooperation with spotting me. Mainly, we want to make sure Mom understands day by day that she is not forgotten; not relegated to long term nursing home care; she will be returning to me, and she and I will continue, under much better circumstances than of late, to be partners-in-crime.
    I actually don't want to visit too often or spend too much time with her because, as I think I've mentioned before, she performs for others but not for me. Right now it is extremely important that she perform well. I think she could also use a vacation from me as much as I could from her. As has already been evidenced in the hospital, she is capable of beckoning people to eat out of her hand so I know if we get the right facility she will do not just fine on her own but fucking fine.
    It helps, I discovered, to have a powerful, well-known heath care social worker in the family. He is, as I write, negotiating with another MSW he knows who advocates on behalf of people for skilled nursing home placement to find the best, completely covered by Medicare/TriCare skilled nursing facility for my mother, taking into consideration her needs and her condition. The other MSW's agency works very quickly (that's their job). By the time of my mother's release on Thursday she will be transported directly to what I know will be an excellent facility.
    Gotta go...I need to schedule an appointment for myself with her PCP to go over her new medication schedule (which will be reduced, once again, thank god) and review what his role will be at her facility.
    I hope they deliver my costume by Fed-Ex to the Valley. I could use it later today.

8/7/04 - 0928
    You might find it interesting to know that at skilled nursing facilities and/or nursing homes they have their own type of "living will" arrangements which cover situations where revival of heart and lungs or the use of defibrilators and what I call jump starters would most likely return the patient to a state similar to the state in which they were previous to when they required the use of such equipment. These directives supersede a living will when there is good medical reason to believe that the patient will be brought back into something other than a terminally vegetative or terminally comatose state. Did you know that "vegetative" and "comatose" are two separate medical states which can exist together but often don't? In other words, it is possible to be vegetative and not comatose, from medicine's perspective, or to be comatose and not vegetative. Interesting that SNFs/nursing homes would find these provisions necessary but hospitals do not.