Mom & Me Two Archive

...just a bit ago in between acts of performing "the full meal deal" on my mother's hair. We'll probably style it later tonight. At the moment, she's involved in Finding Nemo and I'm trying out the new template. It probably doesn't look that much different except for a few color and font changes. However, it will stand up to negative resizing without collapsing in on itself.
    Since changes appear to be happening fairly regularly here, I suppose I'd better get in the habit of posting the changes to Updates again. We'll see how that goes now that I've upped the amount of journaling work I do on this by starting Mom's Daily Tests & Meds. I didn't think of it this way when I started that journal but it's very helpful to me. It might be helpful to someone else.
    Time for "lunch-lite".
    Later.

...and working on the template problem involving its screen interpretation collapsing on itself and moving the "Links" area over to the left, smashing the journal text. The template is my revision of one of Blogger's original templates. I'm going to attempt to fix this problem over the next few days so, be aware, I may be going through a variety of templates before I get the process perfected.
    Mom talked me into letting her sleep "another hour...just before noon".
    I'll try again at 1130. I can see in the way she's laying that her body, especially her legs, are recuperating. As I told her as her eyelids sunk, "The grocery stays open until 2200 or so anyway, others stay open later, we can't bake muffins or whatever I'm going to do with those blueberries until evening now anyway, so go ahead, sleep."
    "Wake me up before noon," she said, eyes closed.
    I can only imagine what kinds of messages her legs are sending her after the last two days. Most of the time she attributes her aches and pains to, well, old age and ignores them. But I can see by her position in the bed under the comforter that her body is actively trying to work some of this sudden activity out. So I'll give her a little while longer.
    Later.

    Yesterday after having napped a bit Mom roared out of her bedroom with her mind full of thoughts about loved ones passed. "I woke up with an idea," she said, "we need to get ahold of MS's, see what they're up to now."
    "You mean MS and DU, [Female Cousin] and [Male Cousin]." It's always a good policy to check in case another memory of the same name is cropping up from the Long Buried file.
    "Yes. We haven't seen them in awhile."
    "No, we haven't. And, I think we can get ahold of [Male Cousin's family], I believe they retired at their last number. Through him we can probably get yet another of [Female Cousin's] new numbers. MS died, though, Mom, I think it was in 1998. DU died unexpectedly in 1999, I think it was."
    "Well, I didn't know!"
    I'm always careful about correcting her regarding dead relatives and doing it sensitively and completely. This has always seemed the best way to handle these situations. "Yes," I assure her, "you did, and you attended both their funerals." I continued relating the exact circumstances under which each died, including her younger sister's long medical decline and her brother-in-law's revitalization just prior to his death, including his plans to remarry and the house he and his intended had in escrow to buy together...
    ..."Sounds like DU," she interjected with a touch of disgust in her voice, much to my surprise...
    ...when, suddenly, the brother-in-law keeled over in his bedroom one afternoon in December of 1999 of a massive heart attack and never came to.
    And then the inevitable question, "Well, I don't understand it. Why don't I remember these things?!?"
    When she asks this I always have a quick decision to make about how I'm going to respond. I never lie or "make nice" but sometimes more of the truth is appropriate, sometimes less. Last night her level of alertness dictated my decision to "do" all the truth.
    "Well, Mom," I began, acting comedically exasperated on her behalf, "the reason you don't remember some things is because you're old. That's the fundamental part of the truth."
    My deliberately comic tone allowed her to recover from the smack of this particular truth with a lively smirk, as though she was saying, "Well, tell me something I don't know."
    "Look," I suggested, devising yet another non-threatening way to display this truth for her. "Why don't we start at some point in the past and see how much you do remember?"
    Delivered with real interest, "Good idea."
    "I'm sure you remember Grandpa, your dad, dying."
    "Oh, of course girl!"
    Spirits remain high. Good, good, good. "And Grandma, your mom. You remember that she died."
    "Yes," delivered as if to say, "C'mon, give me something harder!"
    You remember Grandma's decline. How [your sister's family] moved her in, built her an apartment, took care of her for several years until she took to curling into a fetal position and it was better to have her in a nursing home. And how you and I visited her almost every day until she died."
    "Yes."
    "And you remember [your brother] dying? And [his wife]?"
    "Yes. Poor [brother]."
    Wow. She remembers a lot. "Okay. You remember us buying this house."
    "Yes. I almost didn't buy it."
    "I know. And we almost got sued."
    She laughed. "Oh, yes! I remember!" Flashbacks of her deciding, two days before escrow closed, to decline to buy this house because it didn't "have enough closet space". Although I knew this would anger the seller and Mom was suffering a particularly acute and bizarre case of buyer's remorse and, as well, I was handling all the negotiations, I could have overruled her pursuit of her balking and the sale would have gone through without threats and bad blood. I'd already decided, though, when I realized I would be handling this buy, not Mom, that I would honor her wishes as much as I could. It seemed reasonable for me to honor a mistaken wish so we could both learn what would happen. We did. Everyone groaned, loudly, the seller loudest of all, amplified by an attorney's demand that Mom proceed, "as expected" with buying the house. Her financial advisor suggested that her only way out of this was that she would have to have herself declared mentally incompetent, which she understood and didn't want. As we sat in our realtor's office facing off his incredible disappoint and near rage at my mother's "idiotic" decision and my insistence on following her wishes to their logical conclusion, I remembered putting my arm around my mother, catching her gaze and saying, "It's you and me, Mom, through good times and bad. We're sticking by each other, even if we get into trouble." Our realtor sighed with exasperation. The sale went through. I knew, at this moment, while we were discussing her memory, she was remembering all this, too. Good. That takes us up to 1997.
    "Do you remember MS's decline?"
    A little. Operations. MS in the hospital, her advancing confusion being signaled from her thinking she was in a hotel, and a bad one at that. Mom didn't remember MS's visits up here pre-nursing home. She didn't remember that DU was becoming overwhelmed with MS's care and made the decision to put her in a nursing home, "a very good one". Mom did not remember all our many visits to MS, there, nor continuing to visit DU. I related the detail of MS's quick, unexpected, merciful death: Keeling over of heart failure in the hall the nursing home as she strolled with her husband.
    I continued with DU's life post-MS, his death, both funerals, and the scattering of their family since then. All this was news to her.
    Curiously, she remembered A Beloved Cousin finally succumbing to Juvenile Onset Diabetes at an advanced age, closer to 90 than 80. That happened September of 2002, just as our trials with anemia began.
    Then we talked about why her memory fails her, short-term, near short-term and long term. She wanted to know why this doesn't happen to all old people and why it's happening to her.
    I didn't have an adequate answer for her. I suggested a few things which I knew she would consider dispassionately and forget later: Her COPD certainly robs her of brain power; being ill a lot doesn't help; being in pain doesn't help; feeling less than strong physically doesn't help. I assured her that her brain power varies from day to day, sometimes from hour to hour, and at this stage is closely connected with her physical being.
    "Anyway," I assured her, "that's why I'm here. I do your remembering for you. It keeps my memory sharp."
    She looked at me from an angle, equally sharp as my claims about my own memory. "And what happens when your memory starts to go, child?!?" She's only half teasing.
    "Well, I've already experienced some blips and we're doing okay, don't you think?"
    She grinned. "Yes. We're doing just fine."
        "You're lucky you have me." I say this to her a lot in order to keep her alert enough to value me. This is important to both of us.
    She looked at me directly, indicating that this isn't just an auto-responder notice: "You bet I am. I think I'll keep you."
    She does not like becoming aware of being old and its disadvantages and trials. At the same time, she doesn't like being kidded, doesn't like the gentle lie.
    She and I both know that she is much, much less vulnerable being with me, right now at least, than she would be in a nursing home. She knows that the memory of strangers would allow her to reach back and touch her foundations when necessary. Strangers would be more likely to correct her, ask her who the President of the United States is and mark something on a chart about memory decline. They would not be able to knowledgeably play along as college roommate or mother or whomever I am to my mother at any particular time. Thus, adjustments in relationships will shimmer with the opportunity to become insinuatingly abusive. Mom would be locked into a less expectant, less supported way of being at the hands of strangers.
    One thing I've learned about old age, Ancient One status: The will can be very strong but the shell is frustratingly weak. "It hurts to be old." Sometimes, it hurts mentally, too. I think, allowing that pain to occasionally be borne, allowing the mourning for lost faculties as well as the celebration of regenerating faculties, allowing all this helps the Ancient One maintain more than a semblance of alertness. This kind of mental caretaking can rarely be done by strangers, even intimate strangers, because the observer of the story-told-to-a-stranger by an Ancient One must become active, must often become the provider of and an actor in the story. Even the most compassionate stranger is "...in a strange land," when coping with the creative memory of Ancient Ones. Relatives often are strangers but in a land familiar to the Ancient One. This often helps the Ancient One decrease the pain of faulty memory and bear what can be borne by celebrating the equally mysterious and episodic "...Remembrance of Things Past".
    It's 1027. Just about time to scout The Mom out for a wake-up call. Her exercise today will feature a trip to the grocery in search of one, maybe two items. I am expecting Mom to walker the entire trip from parking lot through store to parking lot. This won't happen until after breakfast and doing her hair so it will probably be later this afternoon. I'm letting her sleep in a little, today.
    Later.

...not all that much time to explore them. Maybe that's good.

1. Although for the time being the phone remains unplugged and an essential email remains unanswered, I feel somewhat more optimistic about the business part of the day. I will allow it to intrude only as it does not distract me from Mom. Today is Day Two of Our More Active Phase and I want to remain alert to whatever may happen. I'm planning a short trip to Costco with the walker and the wheel chair (just in case) and, of course, the ever present emergency bag. We don't need much. Some of the stuff we will shortly be needing I can put off for a few days as Mom's strength develops. I also expect, though, that our breakfast "hour" will drag out to a good two hours, we probably won't be out the door headed toward Costco until it will only be an hour and a half or so until Mom's lunch, which will arrive about the time we finish shopping at Costco. So I'll take meds.
       I do have a shorter trip in mind in case Costco seems too daunting to her. I need to get some more of those iron protein succinylate pills I've been giving her. The only source up here is New Frontiers Natural Foods [sorry, they don't seem to have a website, although they're mentioned throughout the web on other sites]. She'll enjoy looking around there and walkers are common in the aisles. Although she hates to admit it, I think she thinks it sounds "shallow", she's a born shopper and loves product watching as a close second to people watching. Watching people shopping is a big hit with her.
2. Something about her curiously ancient memory: I've been thinking about it since the afternoon after she'd completed her blood transfusion and I was back after a restless nap. The day nurse, a jewel who took an unusual interest in Mom, although she had a propensity for referring to Mom as "cute" which we both found mildly offensive, mentioned that Mom's mental faculties "were coming back", from what apparently was a bit of a low the last time she was checked immediately after the transfusion was closed down. "Right after we took her off (the infusion line), she didn't know who the president is and the year."
       Hmmm...I thought. She never knows those. I wish, sometimes, that I didn't know them.
       "But," the nurse continued, "she seems to have perked up. I'll bet she remembers just about everything, now," she chirped optimistically. Luckily, the nurse did not put this supposition to the test.
       My mother's mental creativity is rarely evident, especially in public (including on the telephone) when she's "on show". This is why I call her condition, which is surely a decline from the point of view of her ability to manage her life in society, "mental creativity". Although she continues to surprise me in what she remembers, what she doesn't and how she remembers what she does remember, I've gotten the hang of how her mind works now and can often fill in the details when her mind drifts in the middle of a memory surge. I can even do this during the more bizarre instances, as, for instance, when she decided I was older than her. I have no trouble understanding where her creativities come from nor do I have trouble, in my feet-in-reality way, going along with them, sometimes in order to steer her back to this agreed upon present, sometimes just to enjoy myself on a foreign voyage.
       The thing is, though, what I've been thinking about since listening to the nurse's take on my mother's mental acuity (or lack thereof) is that, in my mother's case, it does not matter anymore who the president is, nor what year or century we're in. I'm not, for instance, always clear yet on the century. In my mother's defense, the nurse also told me that, when asked who the president was, my mother said, "What does it matter?" In the Buddhist sense, good question.
       The problem, I think, with nursing homes and care facilities (whether skilled or not) is that those with "declining" mental abilities but with a strong hold on the reality surrounding them at any particular moment cannot be seen within the entirety of their lives, thus their mental creativities are not given the dignity and respect nor accorded the reality that caregiving within a home environment with at least one relative with whom the Ancient One has a past can afford. For this reason (among others) I believe our situation is highly preferable to nursing home care for my mother at this stage of the game. I fully recognize that senile dementia can become unmanageable for any caretaker. This doesn't always happen, though: The Ancient One does not always outlive their brain and different stages can be handled most felicitously in different ways.
       My maternal grandmother, for instance, remained in the home of and under the care of her youngest daughter and family, all of whom were adults and passing through the house on a regular basis, bringing the world outside into my grandmother, until she could no longer stand it and curled away from all of it in a paranoid fetal position, one of the last described stages of classic Alzheimer's. When, in the nursing home, she could be pried into a wheelchair, she was constantly ready to "go." Various medical staff had their own interpretations of this phenomenon. Mom and I, though, when we visited Grandma at the nursing home, knew she wanted to go anywhere but where she was, that was the ticket. So, one way or another, when we visited her we went through Mom's and my memories and guesses of where Grandma's favorite places to be might have been. We would know we'd hit a good one when she stopped chanting, "Go, go..." and drifted into reverie on our retelling of memories.
       So, you see where I'm going with this? Have I gotten there?

    Time to rouse Sleeping Beauty.
    I wonder what her numbers will be this morning.
    Later.

...from yesterday's blood draw. This test, Blood Test Draw Date 6/23/04 is the first of her monthly, standing order blood draws. It looks as though, in most cases, we'll get the results the following day: "pt to get copy", as per the prescription her PCP wrote.
    Her hemoglobin has recovered nicely. She definitely needed more iron than she was prescribed. I'm curious to see the results of the Iron & TIBC/Ferritin test Dr. Coury drew on 6/8/04. In yesterday's draw everything else is remaining about the same. Her RDW continues to rise. I wonder if this is normal this far out after a blood transfusion.
    I purchased two medical books today, Mosby's Manual of Diagnositc and Laboratory Tests, a book with detailed descriptions of lab and diagnostic tests and Mosby's Diagnostic and Laborary Test Reference Sixth Edition (the url leads to a description of the Seventh Edition; apparently these are updated frequently), an alphabetical reference manual. There are many of these books on the market. I went for the ones that made the most sense to me and my situation. I quickly looked for books about anemia but, in the limited time, couldn't find any. I'll need to do some more research on that on the internet. I'm hoping that using these books will help me remember all the information I pick up, here and there, about the results of her tests.
    As I mentioned in Mom's Daily Tests and Meds, we began what I hope I will be able to dub, "Our Active Phase" today. Although I know some of her lethargy is a result of remaining anemic but I believe some of it is habit. Last night I decided to address this part of it in a strong tone. "Mom," I told her, "I know you're tired, I know you're not feeling good. But it doesn't take much movement to prevent bowel accidents."
    Her eyelids flew open. She looked at me in surprise.
    "Yeah, Mom. What I'm saying is, the three accidents in the last 36 hours could have been avoided. Your body's getting back in that, "Okay, she isn't getting up so we'll do what we need to do while she's down," mode. That can be prevented and we're going to prevent it. I don't mind cleaning up bowel accidents that can't be avoided, but bowel accidents due to lack of movement can still be avoided in your case."
    "Well," she sputtered, "in that case, I can clean them up! You don't have to!"
    "Mom, the truth is, you can help but you can't clean yourself anymore. You can't always tell, anymore, where you need to be cleaned. You can't reach all the places that need to be cleaned. For you safety I can't let you clean up unattended, even though you'd like me to."
    It's not uncommon for me to use the tactic of confronting her with the unpleasant truth even though I know she won't consciously remember the actual confrontation. Somewhere, though, her vast unconscious will record what I'm telling her and she'll act on it. A few years ago when I realized this is how her brain works now, I started talking out loud directly to her subconscious. I will say to her almost every night as she settles into bed, "I'm addressing your subconscious now. Keep the oxygen cannula in. You need it." It works, every night I say it. When I've said it a lot on sequential nights it works on the nights I forget.
    It may seem cruel to hit her straight on like this with a very unpleasant circumstance that needs to change and can only change with her cooperation. I find, though, that if, in some way, I manage to get the unvarnished message across and into her subconscious the change needed happens much more quickly and almost painlessly.
    I'm feeling better. I guess I was waiting "hard" on the results of the blood draw. Although I was hoping for better on the other indicators, I'm pleased with her hemoglobin, along with the other indicators, and what it shows. If we're careful and the acupuncture helps she may not need another transfusion for a long time.

    I thought it only fair to note that, more and more, the mundane, eating and body functions information will appear written into the postings on Mom's Daily Tests and Meds. It seems more appropriate to post that information there, as it usually ties in with her diet and measurements.
    I am pleased to report: In her after breakfast reverie in this morning she seems perked up and willing to "go out" for a bit, but, "not too long" she warns. We'll see what that means...
    ...later.

    In 14 minutes I'll be waking her. Not that we have an awful lot to do but we need to pick up her CBC results from the lab this afternoon. A trip to the grocery might be in order because yesterday's was truncated by a shitting accident and I forgot a couple of items.
    I'm hoping that if I keep her used to movement and begin strutting up her waking hours little by little (which I'm not doing today), that her body will revive some and shitting accidents will again retreat to the past and the future.
    Last night when I was feeling up to here with her lethargy (which may not be entirely her fault, the CBC results will tell) I literally threw up my hands and told her, "You know, it's entirely possible that you're bleeding internally. A lot. All I can tell you is that if your really low energy level continues, if I continue finding it extremely frustrating keeping you up, then, I don't know, maybe I oughta throw you to the doctors, let them scope you up and down, take pictures, open you up, try to get this thing addressed."
    Mom looked startled. "No. I don't want that. I don't think I'm bleeding inside."
    "Look, that's what I'm thinking, too, but if your energy doesn't revive, if the blood transfusion doesn't work, I can tell you, this level of observation and entertainment is so intense that I'm almost ready to let the doctors have at you."
    For the rest of the evening her energy perked up. Previous to this her energy level was so low that, for instance, when I attempted to help her put on her shoes yesterday she expected me to pick up her foot, put it in the shoe and adjust the shoe to her. I laughed when she indicated this. "No way, lady. I injured myself once before handling your feet wrong. If you're capable of doing most of the shot-putting-on work, you're going to do it!"
    She did.
    Still and all, even with my curious holding back of late, trying to put off business and getting used to what I need to observe and calculate into my mother's care now, this is better than a nursing home. Better for her and better for me. I could, literally, drive myself crazy keeping after a nursing home to administer adequate care (i.e., no skin tears, attention to diet, attention to level of hydration, adequate mental and physical exercise). As it is, this situation is not driving me crazy, it's simply driving me to figure out how to incorporate yet another level of my mother's invalidity (hmmm...interesting root, interesting uses of it's extensions) into our routine and figure out how much of it I can expect for a long time and how much I can expect to be readily alleviated.
    Later.

...can't take a diabetic's blood sugar without horribly bruising the diabetic's fingers. Every time I take my mother's blood sugar now I remember the increasingly bruised fingers she acquired while in the hospital. Even when I first began taking her blood sugar I hardly ever bruised her, and then just a little smudge, usually red. The hospital left her with blue-black fingerstips on both hands. Granted, it takes a little practice to get good at it, to remember to look for fingers already pumped and further pump the finger; to punch straight in; to encourage a drop of blood by pressing, not squeezing; but, it doesn't take much. I learned it all in our first session with the visiting nurse.
    Why do health professionals have a problem taking a bruise free blood sugar?
    Later.

...posted, as of last night, on Mom's Daily Tests and Meds. The doctor has a previous 20 reading history from June 8th back. What you'd see, if you looked at it, is her unusually low blood pressure for the 4 days or so before the blood transfusion.
    The above mentioned tests and meds journal is where I'll be keeping her up-to-date numbers and meds history from now on.
    I'm, unhappily, feeling like I need one more day, just one more day to recuperate. We've got to go for the blood draw. And Mom is opening her eyes no later than 1000 today. She might not get fed until 1100 or so but her eyes will be open at 1000. I have business calls to make that I'm hoping I'll get around to making today. We'll see. I just can't seem to catch up with myself since the transfusion and the visitors. Damn.
    One more stunning aspect of working with Dr. Gold: Friday, June 11th, after we'd arrived home to Prescott the night previous, one of Dr. Gold's people called to see how Mom was doing. Amazing.
    You know, I almost quake in my boots for Dr. Gold. Aside from his cracker-jack mind (I love physicians with cracker-jack minds), he developed, early, possibly before he started training to become a physician, a sense of compassionate listening, diagnosis and treatment that is pretty rare in a physician as young as he. He also has not yet reorganized his approach to patients based on 10-15 minutes of face time. I find this extraordinary. I hope he is not beaten down by the changes in his profession. I hope he is not overloaded with patients and Plan Capitators to the point of feeling forced to practice in a less effective manner than that for which he is gifted. I think this man came to non-alternative medicine with an already strong, well exercised healing spirit. He is in the right profession. I hope his healing spirit survives non-alternative medicine.
    Did I mention this, lately? Let me check...
    No, I don't think so, but bear with me if I have...
    So, sometime while Mom was in the hospital, MCS and I had a conversation about medical care of the old while discussing Mom's care and Dr. Gold's suggested recommendations (I know, sounds redundant but it's not). "You know, MCS, the research and development needed to medicate and handle old age properly are going to be done on us. It's not being done, much, on Mom's generation because in many cases they're too old. Look at Mom. It will have to be done on us because we're the bulge in the belly of the snake. Thus, we'll benefit only marginally. It will be our kids and their kids who will benefit."
    "That's right," she confirmed.
    In some ways I like this idea. It means, for instance, that physicians will have to listen to us exactly the way Dr. Gold listened to my mother and me. In some ways I find the idea frightening. For instance, mistakes will be made and discovered on us. We'll have no choice but to take risks with treatment. Thus, insurance rates will remain high. Second opinions will be more confusing than reassuring. Personal Medical Advocates (Medical Valets, if you will) will become the trend, paid for through insurance or retained through one's family lawyer-on-retainer. For some time to come no one will be sure what is cause and what is effect. Mighty dicey, I'd say. More dicey than what I'm doing with Mom's health care.
    Well, I'm feeling as though a bit more will be possible today than I previously felt. Perhaps I will post the Doctors and Patience essay this evening. It's undergone some minor changes since Mom's blood transfusion but the main hold up is designing a page for it. I've been, lately, applying all my imaginative and manipulative powers to negotiating Mom's recent health crisis and the fall out, including visitors. More to say on that topic, later. No bad, just rumination.
    Later.

..."Dr. Gold".
    My first contact with Dr. Gold was not under the best of circumstances. I'd been awake close to thirty hours at the hospital with my mother. I'd finally gone home after she was settled in her room napping through the end of her second unit of blood. Blood type A+, by the way, in case anyone should need to know that. I'd called MPS just before 0800 and asked her to call me sometime between 1300 and 1330 to wake me up. Then I'd crashed, phone by my head.
    I remember looking at my watch sometime during the call from Dr. Gold. 0945. Our conversation lasted for probably a half hour. After introducing himself and bearing with my fumbling through writing down his name with the correct spelling (which I got wrong), the first words he spoke were an invitation, not a statement. Doing himself one better, his first invitation was, "Tell me your mother's history." No elaboration.
    I did. As briefly as I could, I covered her entire four years from the fall of 2000 when she began treatment for type 2 diabetes through her hospitalization for a blood transfusion due to severe iron deficiency anemia. I summarized all her tests and treatments including those, like the colonoscopy, which I first opposed and then to which I relented. I summarized all test results, with which I'd refamiliarized myself the previous early morning in the emergency room. I even spoke my piece about my consideration that her anemia may be a blood chemistry problem due to her metformin use. I also remembered, relayed and recited my responses to all the suggested treatments thrown at me by three physicians prior to my speaking to Dr. Gold, who came on at 0700, June 9, 2004, as the floor staff physician.
    The only time during my litany when he broke his silence was to confirm certain pieces of advice I'd received in the last year and a half, including her hematologist's stern directive that, if it were his mother, he would not have a bone marrow biopsy performed; and that of the colonoscopist who pronounced my mother, after what looked like, on paper, to be a tolerable and successful though extremely long procedure, no longer sturdy enough to experience any more scoping of any kind as any less than "torture". Neither of these opinions surprised Dr. Gold.
    After hearing me out he commented, almost off hand, that I "...know [my] mother's medical profile pretty well.". Although I let this escape without comment I was shouting an internal, "Yes!"
    Dr. Gold briefly reviewed the status of my mother's case so far in light of this new development of transfusing blood. "My recommendation is going to be that her anemia be handled from now on with standing blood draws to check her levels and blood transfusions if necessary. No more scoping. No more other testing unless a sudden drop occurs." He went on to explain/agree with me that, although some of her lost strength is recoverable (and later wrote a prescription for "ambulation and strength training" physical therapy) she will remain from now on, probably, just this side of frail, if not actually frail, due to temporary health compromises. No more reason to try to find what is probably obscure intermittent bleeding. Time to address quality of life issues.
    Probably from exhaustion, I began sobbing on the phone. I thanked him for coming to the same conclusion I'd come to and had been trying to promote with my mother's physicians for about a year and a half. I believe at some point I used the word "overjoyed" to describe my reaction.
    He took my astonishment well. He asked me, for the record, if she has a Living Will.
    Yes, an old one, standard 1985 template. No matter, he said, "Do you know her wishes regarding whether to restart her if her lungs or heart fail?"
    Yes. Leave her alone. Keep her from suffering but let her go. DNR all the way, expressed often, I anecdotalized, when she watches "her doctor shows" and says in sidebar, "Don't do that to me," when someone is revived.
    I told him I'd be back at the hospital no later than 1400. By that time, he confirmed, she'd be done with her third unit of blood. This came as a surprise to me. He explained that her hemoglobin wasn't responding as well to the first two but not to be concerned. Although three units seems like a lot of blood it's about average for the circumstances.
    Later that day, when I ventured onto the Telemetry floor at exactly 1400, Dr. Gold was at the station completely available to discuss my mother's case. We both visited her. He asked about her smoking, called her "tough" (which my mother loves). Reiterated his intended recommendations while Mom dozed in and out of what I imagined was a maroon sleep. He told me that Mom's hematologist's partner had also seen Mom while I was, literally, out, and scheduled a bone marrow biopsy in his partner's absence which Dr. Gold, as I vigorously shook my head and begin a verbal protest, assured me he'd canceled.
    There was as well an order for a stool sample if the opportunity arose, which it didn't.
    He told me her hemoglobin was 9.9, a very good sign, no obvious rejection. He was still iffy about when we could leave, as I reminded him that "we have a life and it goes on up in Prescott". He said it was down to days now, rather than weeks, depending on successive blood draws.
    When I noticed, the following morning after negotiating her wild blood sugar, her developing bronchitis, her seemingly intractable dehydration, her feistiness and her skin tears, Dr. Gold looked me in the eye when I catalogued my grievances: "This would not have happened at home; this would not have happened at home; this would not have happened at home; this would not have happened at home." When I was done he agreed. Straight on. Within 2 hours of seeing him my mother was released from the hospital with some temporary and permanent prescriptions and two follow up appointments with her PCP and hematologist.
    The check-out nurse was a dream, absolutely amenable.
    Later, a friend of mine joked, "Yeah, they probably wanted to get you out of there as quickly as possible."
    To which I responded, "Good."
    I've been asked since why, having such immediate and high regard for Dr. Gold, do I not switch PCPs. I consider him one of two hero physicians on my side, the other being her current Mesa PCP. Our relationship with Mom's Mesa PCP is hard fought and hard won. I love his computerized brain and his outspokenness regarding his trust in me as a companion healer. We've had our battles.
    "I usually win," he's said.
    "Funny," I always think in response, "I thought I'd been winning."
    Mom's Mesa PCP and I know how to work together. He has come to an earned understanding of what I do on my mother's medical behalf and how effective I am. He's figured out how to guide me and how to sometimes let me guide him. He knows I have the tools to monitor her steadily and that I make good decisions about what to do on the fly; he's told me this in response to specific sets of circumstances and my response.
    So there's no need to change. I consider myself lucky and mysteriously blessed that I now have two excellent physicians, whose styles are completely different but trust me and read my mother well, at my mother's and my sides. I know who to ask for now at the hospital since my mother will probably always be going to "the closest" hospital rather than the hospital on which her PCP is staff.
    At any rate, Dr. Gold's primary ability par excellence is his ability to listen, which includes a displayed interest, both in his reactiveness during a recitation and in his ability to spit back what he's heard in context of what he'd considering. This is very refreshing. I can imagine, in today's medical establishment, he must always be pressed for time. I'm extremely grateful that he chooses to devote time to the sometimes slow process of listening to his patients and those who tend them. It is obvious that he considers what these people have to say important. His conceptualization of my mother's history from my point of view allowed him and me the option of considering compassionate care from here on out.
    She has been of very good humor throughout this entire Ordeal of Iron Deficiency Anemia and all the unrelated (and related) complications. I have no reason to believe her humor won't last. But, come on, guys. Let's not push it. Look how far she's come. Let's let her show us what else she's got in her without spearing her on scopes and needles unless something grave and most likely fixable occurs.
    It appears that Dr. Gold has internally adopted this attitude toward his patients. The mark of yet another First Class Healer.
    Later.

...for the meal & meds portion of Mom's Daily Test & Med Journal It looks unwieldy, but it isn't.
    This is a bit early for Mom, although my intention is to get her moving a bit earlier, today. I don't think she'll be as recalcitrant as she was yesterday. I was recalcitrant, too, about the whole day. My running exhaustion got the better of me. Although I didn't take it nap it was a very laid back day. I didn't fight Mom's inertia.
    I continue to notice that I am somewhat too emotionally absorbent for my own and Mom's good, and a bit too powerful of an emotional force as well. Sometimes after a particularly eventful day I look back on my incessant intake of her physical and emotional condition and my actions and reactions and realize that the day in question didn't need to be quite as, hmmm, well, emotionally dynamic, at least not for me, and it wouldn't have been if I'd settled down a bit. I'm getting better but I still lean toward the drama of it all.
    I will be back shortly if all goes well to write a bit more regarding our hospital saga. Today is a blood draw day but not before we do Mom's hair. We didn't get around to that last night. Until she went to bed she was feeling physically skittish and was not very willing to be touched, probably in reaction to my drama.
    ...later, Sooner than...

    You can find it here: Mom's Daily Tests & Meds. It's rough. Although the entering of data is slick the organization of explanations and med administration hasn't yet been addressed. It's sloppy. It's a start, though. I'll be adding the Tests and Meds Journal address to the links sections around here.
    I've got a little research to do.
    Later.

...in a different style, apply a little stream of consciousness to our hospital experience.

A First Class Healer

    Although several nurses attended to my mother in ER, one in particular was, as I told him later, a First Class, First Rate Healer. I would say it was a fairly busy night and I believe the nurse who finally took charge of my mother's care was charge nurse that night. As well, my mother was rowdy, I was assertive and doctors were all over her and me trying to convince us [me] to scope her both down and up (to which I repeated her colonoscopist's advice after the July 2003 colonoscopy), to allow a bone marrow biopsy (to which I replied that her hematologist said, "I would not do that to my mother", to which the recommending doctor concurred yet continued to plead, "But, she's bleeding.") Well, maybe she's bleeding. Maybe not.
    In the meantime SuperNurse tended to everything and ran interference for me when I decided to hold the blood transfusion hostage until I received my mother's most recent lab reports and could compare them with her history. When I expressed a need, as in approaching the desk and saying, "Let me put it this way. She just came back from the bathroom wearing 3 pairs of underwear soaked with a quart of urine. The wheelchair is soaked. She dribbled all over the floor. Her freshly made bed will be soaked the moment she lays on it. She needs a change of underwear," response was quick.
    I found a chance, when it was clear that Mom would be admitted, to express my concern about the unfortunate nurse-initiated incidents during our previous experience in September of 2002. SuperNurse listened. For all I know he may have even checked records, as a complaint was filed by my mother's roommate. SuperNurse promised to find excellent staff for us on 4 North and was successful. Although I have a few complaints with procedures, I have only one about the staff and have a few more superior performers to mention as I continue.

Oddities

    Before the transfusion began and doctors were dropping by with results and recommendations, one staff doctor did a quick, digital, finger up the butt rectal exam. He later divulged that the results were "positive" for "occult blood". The next morning another doctor, coincidentally Dr. Gold, told me the rectal exam was "negative". Weird.
    The timing of transfusions is interesting. In my mother's case, initial infusion was slow to allow time for possible alarming reactions to show. Later, the process speeded up.
    I asked MCS why they didn't simply transfuse her into at least a temporarily normal hemoglobin. In order to avoid edema, she explained. Makes sense. However, the resultant state of dehydration the hospital kept her in throughout the next 36 hours, even as she was attached to a saline drip, was disturbing. At one point even Dr. Gold agreed that it was alarming although he attempted to cover with something about it being connected to "the loss of blood", always a safe bet when you don't know what's causing the anemia.
    "Hospitals try their best," an informal advisor assured me. I agree this hospital tried and probably did their best, "but..." he faded. I know. The wrong diet, which shot Mom's blood sugar up to 368 one afternoon when she was begging for a sweet. The skin tears from the tape that went unattended until brought to the staff's attention twice, the first time by the day staff doctor the second time by me. I can attest to the fact that she probably never went completely unattended by staff for more than 15 minutes due to the traffic of extremely helpful CNAs, one in particular whose character was just slightly more rambunctious than Mom's, breathing technicians and both shifts of staff doctors. As well, her free flying mentality, while for some reason overlooked in the history I wrote, was adjusted to well. A couple of times she was referred to as "cute", which irritated both of us but which we tolerated as well meant.
    I was there most of the time, too, and even I missed the fact that she'd somehow been put on a regular menu despite my clear indication on all histories that she is a diabetic and a reporting of her medication and med schedule the night of the ER visit. All I remember is that, around breakfast while she was still being transfused she was ravenous, ordered, received and ate a full breakfast and I thought, "Good. She needs the food. Her blood glucose was 61 last night." I assumed they'd counter any upsurge with insulin, as they do in hospitals. But they didn't.
    One sign of the excellence of the nursing staff is that although my mother was officially in Telemetry, quickly noting her flighty state of awareness the staff made their job and my mother's stay much easier by not connecting her to unnecessary hardware that would set off an alarm every time my mother moved. Thus, her blood pressure and blood oxygen level were not continually monitored. A close eye was kept on my mother's saline drip but nothing was done about the skin tears from the tape until they threatened to become serious wounds and I complained. Even then, with me informing the staff that my mother is a subconscious scratcher, the nurse was unsure what to do and asked me what I do.
    "Well," I said, "I never allow her scratching to develop into skin tears. I don't know how to treat skin tears. You're the nurse." Testy moment. For both of us. Even then I knew I was speaking to an excellent albeit overworked nurse.
    I provoked another testy moment with yet another excellent nurse late into my mother's second night when I was trying to get more than a vague, "hours to days, maybe even weeks" regarding my mother's potential release. When I apologized the next morning (I don't remember saying "I'm sorry" during the apology and I'm not, really) I mentioned, with head bowed, my "French attitude", even though "I didn't actually speak French." I did some literal finger pointing, which wasn't appreciated. I do that when I get excited, good or bad. My outburst, though, thankfully led to what I think was an early release the next morning.

    A few days after the hospital stay I was processing it with yet another MCF who, with family, nursed her father for the last four years of his life and who is also a kidney dialysis technologist. "The reason they let her go is that they knew you knew her history and they probably figured you were right about her getting better care at home. It was probably you bringing in her blood test history that did it. Word about you spread like wild fire, girl!" She's probably right. It pays to be informed.
    I need to check on Mom. It's 1003.
    We should at least act like it's Monday, a business day.
    Later.

I've told people while describing our most recent hospital experience: That is to say, my mother's and mine.
    I was. I've found the secret is not so much having a more assertive attitude, although this helps. The trick is to consider hospitals, medical personnel and medical supply houses, as resources, not as an amalgamated institution. Institutions must usually be battled. Resources can be chosen and rejected.
    I surprised myself. It's taken almost four years, but some auto-attitude finally kicked in. I handled our experience rather than allowing us to become our experience's victims. Our unfortunate incidents surrounding my mother's last hospital experience (in the same hospital) during an overnight observational stay in September of 2002 had certainly prepared me for the routine and how to get through it without that routine ripping through us.
    The triage nurse was immediately helpful, attentive and talkative. The ER had, indeed, prepared in advance. My mother was in a rare mood. I was sure this visit would involve a transfusion, even though the triage nurse explained that this was yet to be determined to the hospital's satisfaction. I was relieved to hear this. Establishing my MPOA status in the absence of documentation was very smooth, especially since my mother was alert.
    Oops. Small life detail to which I must immediately attend. I'll pick up where I'm leaving off, at 0257, 6/21...oh, shit, two movies are overdue, I think...
    ...later.

    Rather like a confirmed alcoholic, my mother began to evidence symptoms of being blood drunk (my phrase) before the transfusion began. She was extremely feisty about being in the hospital. Even more feisty about the transfusion. I had to explain several times why it was necessary in order for her to agree to it. I handled her with as much assertiveness, at least, as I handled the nurses and doctors in ER consulting on my mother's case. At one point she had "memories", in front of a physician, of having had a past transfusion. When she identified the time as "a few years ago", though "less than 10", I reminded her that I'd been with her for 10 years and she hadn't had a transfusion while I'd been with her. The point of her 'memory' was a rowdy retelling of having walked out on that past transfusion. She relented when I pulled MPOA rank and insisted on the transfusion.
    Once the transfusion had been completed her energy peaked just as two of my sisters and our yardman assured me it would. She certainly looked robust, more than I've seen her since the fall of 2000, since she began treatment for adult onset diabetes (type 2). Although she didn't try any Jack Lalane stunts she refused the use of a bed pan, thus necessitating the "choice" of a catheter, then, because the balloon inside her bladder took some time to settle, spent several hours on 6/9/04 insisting that she had to visit the bathroom. That day, 6/9/04, I slept through a few hours of the transfusion from 0900 - 1300 and was back at the hospital by 1400. When I arrived she'd slept off the enforced bed rest of the transfusion.
    At first she looked and sounded very alert. She immediately took me into her confidence: "I've had this idea I've been working out while you were sleeping," she said.
    Ah, I thought. She knows where I've been and has been anticipating my arrival. This is new. "Really," I encouraged. "Tell me about it."
    "I think we should build two small houses, make sure we build them exactly as we like, then connect them with a tunnel."
    "Welllll," I stammered, "not a bad idea. Who would do the building?"
    "I would."
    "And I'd dig the tunnel."
    "Yes!"
    Apparently I'd understood perfectly. "Not a bad idea," I agreed, wondering how long her inebriation was going to last.
    "We've got enough land," she assured me. I assumed she was talking about our Prescott property.
    "How small are these houses going to be?"
    "Oh, small," she said, miming dollhouse size.
    "We'd have to check with zoning. Our property is an odd size, you know, and narrows to the northwest."
    "Yes, I suppose you're right," and she was off on her next idea: That we certainly needed a dog. That one is closer to reality, actually, although requires some negotiation.
    Had I had the time to write earlier I probably would have written about a variety of what seemed, for three days after her transfusion, like miraculous blasts of energy. She expressed renewed interest in crossword puzzling, an interest that continues. She noticed we hadn't kept up with her tabloids. She expressed an interest in the walker she inherited. She dropped back, though, during MPS's and her daughter's visit, from Sunday through Tuesday. Slept a lot. Didn't want to go out much. I was nervous about the blood draw taken on Monday. I finally decided, when I received the results on Tuesday, to up her iron to the power of 4 and change the type. Still, she's been sleeping a lot.
    Today it was impossible to get her out of bed until almost 1500. I haven't been taking regular measurements of anything, just guessing and keeping to her medication schedule as long as she's up. Yesterday I got 4 doses of iron in. Today I think I'll be able to administer only 3. She has had no problems with feet/ankle swelling. Her color is almost artificially good although I can't determine if she's white or peach beneath the ruddiness. She's been riveted to the cable food network, to which our day company introduced my mother, on exactly the right weekend, the "wedding weekend".
    I, too, have taken advantage of the lazy day. I finally figured out that perhaps I could get a nap in early this afternoon and it worked. Not a long one, but very deep. Quite refreshing.
    I wish tomorrow was going to be Sunday. I'm not quite ready for the business I need to do tomorrow but I think I'll be okay.
    We have yet another blood draw scheduled for Tuesday. I'm not nervous about it, just curious. I think blood drunkeness is no longer a factor. I think, as well, that the increased iron is already helping her blood rebuild itself. I'm detecting only a touch of maroon around the corners of her lips. Her nail beds remain pink. Her feet are warm. She's resumed daily bowel movements without accidents. We're going to begin walker practice tomorrow. She's been very accomodating about staying on oxygen. I think things are beginning to look up.

• Blood Draw Test Date: 6/9/04 - This test was of a draw taken in the afternoon some hours after the end of the transfusion.
• Blood Draw Test Date: 6/14/04 - This test was of a draw taken here in Prescott in the morning.

    I thought I was only going to be reporting informal results for the blood drawn on 6/9/04 but the hospital included those results in their packet. The results from the draw of 6/14/04 were drawn and done up here, with high altitude reference ranges. The results are comparable.
    I'm going through all the hospital stuff now. There's much that doesn't need to be discussed. There are some "hospital issues" I want to address, though, which I will also address in a letter to the hospital hosting my mother.
    In the meantime, life intervenes.
    Later.

    I've begun inputting copies of those blood tests run on my mother through her transfusion experience. The following are up for viewing:

• Blood Draw Date: 6/08/04 - Last blood draw upon which the decision to transfuse was made. Values essentially the same as those in the blood draw taken at her PCP's office that afternoon, which sent my mother to the hospital on an emergent basis.
• Blood Draw Date: 6/10/04 - Blood draw taken very early the morning I saw to it that she was released. This blood draw shows that she was holding her own as in comparison with the blood draw taken the evening immediately following her transfusion (to be input), 6/09/04 (results are "informal"), much to All Medical Peoples' surprise and pleasure. I will, soon, as well, be inputting her 6/14/04 blood draw, wherein her Hemoglobin had "dropped" to 9.7.
• I am herein informally reporting the results of the blood draw taken 6/17/04, given to me by phone in response to my request. Mom's hemoglobin had dropped to 8.2 as of 1150 6/17/04. Her hematocrit had dropped to 26.4.

    My understanding of these results, addressed by both her PCP and Dr. Gold, and confirmed by MCS, is that we are now seeing the drop that was expected (and typical) within 24 hours of the blood transfusion. I determined and confirmed with her PCP that she needs to be receiving much more supplemental (and natural) iron. I will reinstitute the more easily and more highly absorbed Iron Protein Succinylate and start with 4 pills a day (containing 18 mg elemental iron/pill for absorption).
    In two days she's reddened significantly. She is still muscularly weak but attempted on her own to explore her new walker and use it. She ate well, hydrated well but slacked off toward bedtime, which came at 2200, a decent hour. She's still sleeping. I'm checking on her.
    I'm also aware that I have some catching up to do which not only involves writing on promised topics under the general heading of The Transfusion Experience but general updating regarding circumstances of interest to those who love and/or are familiar with and interested in my mother.
    I just checked on her. She is in her Hold Up the Wall period of sleep which usually involves dreaming but wasn't a few minutes ago. I'm not sure if she's pale. It's hard for me to tell anymore unless I'm confronted with her complexion during and immediately following a blood transfusion. Her blood pressure is doing fine, is even up: Diastolic usually in the 60s/Systolic as high as the low 140s but usually in the 110s and 120s. Excellent, really, considering her typically low blood pressure and her frighteningly low blood pressure just previous to the transfusion. She is on 2.5 mg x 2/day lisinopril. I halve a 5 mg tablet. Her PCP and I agree that there is no need to up the dose,at this time even in Prescott.
    I must write about the changes in her medications. I've been meaning to start a daily Numbers/BP/Medication Administration journal; figured out a way to set it up so that I can input this stuff quickly each day. I just haven't gotten around to building it and starting it yet, although I've thought to collect some data.
    Mom, under my care, recovered from her Hospital Blood Sugar Hullaballo and has been very nicely under control for some time now. Her acupuncturist is addressing what she expresses, from her examinations, as an allergy to metformin. She further explained that Mom's body was treating it as an allergen, thus not working with it as well as it could. She continued that this allergic reaction was begin expressed "through the blood". She began to needle/manipulate her energy for it this last Wednesday. I'm not sure if I've seen any improvement specific to the treatment. So many indicators have slid back and forth over the last week and a half.
    Since Mom was transfused I've heard a variety of takes on the "blood transfusion as internal nuclear reactor" prediction, which happens in some cases. In other cases the energy improvement is mild and short lived while nonetheless welcome, especially in the chronic terminally ill. I've heard of one man whose energy boost involves nothing more than wanting to see a movie within 24 hours of his transfusions. I know another man, my mother's traditional and continuing caretaker for her property in Mesa, same age as her although significantly more spry and alert, also a long time smoker, not diabetic, not on oxygen, very active (continues his yard cleaning/caretaking business). He recently told me he had a blood transfusion 2.5 years ago

"...never looked back...best thing I ever had done...I know, I know, they did all that stuff to me, too, I even took the scope down the throat. Nothing. They couldn't find nothing. So they gave me a transfusion. Haven't had to have one since. 'Course, I'm on a very strong iron pill everyday now for the rest of my life, Niferex. Yeah, they do those monthly blood draws on me too. I tell 'em they're gonna draw me away, I'm so skinny. They get a kick out of that. No, no, never found nothing. No more transfusions."

    It remains to be seen if this is anything like how my mother is responding.
    Our day visitors of yesterday judged her "looking good" but "tired". She slept. A lot. She also spent some time out in the yard. She is on pulse oxygen almost all the time now, 3/lpm up here, 2/lpm down there. At these settings she remains at 99% Blood Oxygen level. The day before yesterday she had no cigarettes. Never thought of it. Yesterday she had some but stubbed those out when they made her cough, usually, I noticed, on the third puff. As soon as she stubs one out the cigarettes and paraphernalia are removed and she goes back on oxygen. I'm using the E Cylinders, the big ones, now.
    Two days ago she became curious about how to wheel them around in the cart for herself. She was fairly successful; not yet strong nor balanced enough to lift the apparatus with her up stairs or walk up stairs backwards dragging the cart. By the way to this, I think I have located two "excellent" physical therapists to fulfill the prescription, written by Dr. Gold, for "ambulation and strength training". One is a couple. The other a singular therapist. I'll be investigating them this week and allowing them to informally evaluate my mother. I'm hoping to have an offer of therapy directed toward specific, practical, probably achievable goals, i.e.:

• Being able to bathe again because she can arise from the bathtub on her own;
• No longer shy about walking, whether with and/or without the walker (which is working very well for her, and which she definitely likes, although she continues to say she doesn't like it);
• Being able to sit and stand without thought and without throwing herself into position (which compromises her still healing back);
• some aerobic improvement (I'm circumspect about this);
• Improvement in energy level;
• Improvement in interest in life outside the house.

    I've got stuff to do. It always helps if I have the house set up before Mom arises. I also need some time to pre-relax into the next few intense hours.
    Enjoy the blood test results. I'll check in as I input others, one of which, I meant to mention, is an interesting comparison of results of two sequential blood tests post-transfusion, I believe, or something like that. It looks interesting.
    Later.