Mom & Me Two Archive

...Mrs. Nave (really) told our class during a health lesson that lost sleep cannot be "made up". You lose it forever. At the time I wasn't in the habit of losing sleep so I don't know why I remember that particular and ambiguous nugget of information. I was reminded of it this morning, though, because my body, in flagrant disregard of The Sleep Rule, decided to make up my lost sleep.
    The moral is, when I want to awaken my mother significantly earlier than the previous day, I need to not trip the light fantastic longer than the available light. I woke up exactly an hour ago (I never use alarms unless I must awaken after what I expect to be less than six hours of sleep) and have been hustling to set up the house for Mom, something I typically do at night but figured I didn't need to do last night. Because, of course, I knew I'd be up early.
    Time to get her up and start the Niferex-150 regimen. I'm not sure what we'll be doing today. We could use a visit to the grocery but that won't be urgent until tomorrow. We could wander down to the square and people watch during the Frontier Days Arts and Crafts festival. I am disinclined to suggest any of these possibilities at the moment, as a lazy day seems more in order, maybe some walkering just for the practice in our driveway, but Mom actually walkers "better" when we're moving to a purpose other than practice. We'll see.
    Later.

...that begin one way and end another. Which is to say, it began verrrrry sloooowly for Mom. I intended on awakening her at 1000 or so but got involved in a phone conversation with MCS right after doing some more research on anemia. Mom got to sleep in until 1140. She had awakened earlier. She was propped on her elbows and looking around when I peaked in on her a little before 0700 but wanted to go back to sleep so I let her. I regretted that decision when I finally got around to rousing her at 1140 but her day started with some sort of internal bang and continued from there.
    I'm pretty exhausted. My days always begin at least a few hours before hers. This morning it was more like several hours. Once she arose we hit the ground running. She needed only a little prodding to accompany me on my errands and extended one well beyond my wildest hopes, spending a good half hour walkering up and down aisles at the drug store under her own recognizance (which has only recently begun again) marveling at all the goods and choosing a new crossword puzzle magazine for herself while I looked for the specificities that brought us to that store. By the time she was ready to go she was lightly panting and clearly good to rest. I considered turning her oxygen up to 4/lpm but decided against it, considering that she is in the process of building her aerobic capacity and a little panting is to be expected. It certainly seems like I should give her body a chance to test, push and strengthen itself.
    If you've checked in on Mom's Daily Tests & Meds (which I'm sure you haven't, as almost no one goes there) you'll know that she and I had a mildly protracted discussion about when days "should" begin and end. During this long 8 months of convalescence from her back injury and her bouts with anemia it's been common for her to start late and end early. Tonight, though, she considered, at my suggestion, that since we rarely have a definite schedule to keep, we can certainly change the rules about when a day should begin and when it should end. If one eats breakfast just before 1300, there is certainly no reason why one shouldn't be eating dinner at 2210. She had enough energy and vitality to appreciate my reasoning, even taking delight in the possibility that what we were doing was a touch European and maybe even just this side of wicked.
    The day, from about 1500 on, was labor intensive for me up until just before she went to bed, which was less than an hour ago (the time, now, is 0041, 7/2/04). She entertained herself well between television, crosswords and moving about the house looking for things. I thought I was having trouble hydrating her but discovered that when she is active she hydrates well and quickly and seems to hold on to fluid better than when she is sedentary. This is interesting for me to ponder and I'm curious to see if this trend continues.
    I picked up the Niferex-150 a very strong combination of iron polysaccharide and ferrous bisglycinate chelate (of which there is actually a lot of information but I couldn't decide to which to direct you) today and I'll begin administering one 150 mg tablet in the morning as soon as she awakens with 500 mg vitamin C. That'll be it for the day. This is not the highest daily amount of iron she's ever taken. During her first bout with anemia when I knew nothing about iron supplements I followed her PCP's recommendation that I administer ferrous sulfate, 65 mg (elemental iron) three times a day. Aside from the fact that this is an awful lot of iron, it was also the least absorbed supplement and the one whose distinction is that it translates into free radicals in the body immediately upon digestion. I'm looking forward to her "as needed" blood draw next week to see if this supplement has a somewhat more heightened effect than the iron protein succinylate I've been administering. I'm not unhappy with the current supplement. It's just that the highest concentration I can get it in is 18 mg capsules, which is an awful lot of capsules to administer in order to deliver the boost she needs right now. As well, this is the iron that our yard man in Mesa was prescribed after his blood transfusion and he's never looked back. He now takes two daily doses of Niferex-40 by prescription and this seems to do the trick for him. We'll see what Niferex does for my mother.
    You'll have to excuse me, I'm dead on my ass and need some sleep if I'm going to be up to the activity I have planned into which to coax Mom tomorrow. I have much I'd like to muse about but life intervenes, as usual, and, while I depend on the activity of writing to help me deal with this part of my life, doing life takes precedence.
    Later.

thank you. It typically takes me a day or so to recover emotionally from a stressful negotiation with Mom's doctors regardless of how productive it is. I always allow myself that day. I schedule it, in fact, in the sense that I schedule nothing else for any day after medical trips, especially heavy duty ones like Tuesday's.
    Mom seems to be doing well despite her anemia. I can't stay long...we're heading out to pick up some pharmacy orders and do some walkering, a good sign. I'll write more...
    ...later.

...about Mom's anemia and our visit to the Valley yesterday. The visit itself seemed to go well, Mom insisted on walkering everywhere we went and walkered well. The doctor's visits, well, I'll talk about those later. The most discouraging aspect of yesterday happened today when her PCP's office called me about the results of yesterday's CBC blood draw. Despite the iron I've been feeding her and the meaty meals her hemoglobin has dropped to 8.9. So I guess I will set about the difficult task of trying to calculate giving her iron one hour before or two hours after eating. This is going to be tricky considering the way our life is set up. I decided, though, on my own, to order a very strong over-the-counter iron poly-saccharide, Niferex-150, also pretty expensive, which should be in tomorrow. I'll switch her over to that Friday, probably, and hopefully the blood draw her PCP has ordered for next week will show some improvement.
    I've also decided to allow an upper GI. It's an imaging test using barium. She tolerates these well. I doubt that any bleeding will be found. No bleeding is ever found. I am continuing to hold firm against the endoscopy and the bone marrow biopsy.
    More on everything else later. Suffice it to say that with every bit of research I've done today and every moment of deep consideration of all the bits of information I've gleaned from doctors, much of which is contradictory, I just can't think about any of this anymore for awhile, let alone write about it. Mom's tired of all this. I'm tired of it, too. I'm at the point where I want to forget doctors and medicines and just let her live medical-establishment-free until she dies. Adult Protective Services would consider this neglect but they would not, of course, consider this ridiculous medical catch-22 we're in abusive or negligent. We're being led round and round in circles now and I'm feeling the strong need to stop the spinning.
    I need to switch the water on the roses. Maybe I'll write more later today, maybe tomorrow, maybe I'll just take a couple days off from considering any of this and try to sit back and enjoy this time I have with my mother without doctors or thoughts of medicine, hoping she's enjoying it, too.
    "I'm tired. I want to go home." That's what Mom said yesterday afternoon after our last doctor's visit. We had planned to remain through rush hour, have dinner out which she never refuses then head up the mountain when the freeways were clear. After the day we had, though, especially the last doctor's visit, I didn't blame her, that's all I wanted, too, to go home.
    I'm tired of this medical lock-step we're in. I'm tired of hauling Mom off to doctor after doctor and getting absolutely nowhere while she chants in the background, "I don't think I need to see any more doctors. I feel fine." Even when her hemoglobin was 5.7 and she needed a transfusion she told me, "No I don't, I feel fine." And, the thing is, regardless of what goes on inside her body, most of the time she does feel fine according to her determinations.
    All I want is to go home. That's all.

...and it's been an active day: Much to think about, much to mention. But I think I'll take a nap while Mom's napping. Tomorrow's going to be a full day for me from 0400 until well after dark I'm sure. Tonight might run a little late as well, considering that Mom's napping for it. Suffice it to say that I couldn't stop smiling during our entire outing today. Remind me to tell you why in detail the next time we meet...
    Later.

...so extreme is the restlessness caused by the level of vigilance in which I am embracing my mother right now. Because we leave all windows and a few locking Arcadia screen doors open during the night, which thrills the cats, as there is a great deal of wild activity surrounding our house during the catting hours, this morning, when I couldn't find The Cat In Question, I began a close investigation of all windows to see if she might have excitedly and accidentally scratched and fallen through one during feral communication with some Outside Being. I finally found her deep in our "stash" closet, sleeping on top of one of the uppermost boxes. Last night was not the first night she's refused to sleep with me lately. It was, however, the first night that she didn't bother to slip onto my bed to try to find a comfortable position. The Cat Who Thinks I Saved Her Life is still sleeping with me, patiently, close against my leg. But I'm sure if she didn't have that emotional attachment to me she'd be somewhere in the closet I've come to think of as The Cat House.
    My vigilance during sleep includes episodes like the one last night. Sometime between 0100 and 0200 (I have only a vague recollection of the minutes) I awoke to the sound of my mother's dry-coughing and scurried into her room to check on her. During her hemoglobin plunge this coughing came to indicate that she was vomiting up hours old dinner, usually in her sleep, completely unaware she was doing this. Now it's just a sign that her bronchial passages are a bit dry from the increased oxygen hours she's been doing since 5 days previous to the blood transfusion. Last night, as I suspected, she was just unconsciously hacking away some air-abrasion irritation in her throat.
    Now that I know that the vomiting habit she was developing before her transfusion was a symptom of severe anemia and, as well, that vomiting is not an activity in which my mother has been known to indulge, any vomiting from her deserves to be noted.
    My vigilance this time is less directed toward detecting developing ill health and more directed toward discovering a way to encourage her body to be less anemic more often; perhaps to even allow us some time to see if her acupuncturist can address some of the blood chemistry and "pathogen" dynamics that might be having an effect on her anemia, her diabetes, her incontinence, her energy level, etc. I needed this last week without visitors, the last of which was last Saturday, and without having to go to The Valley, to concentrate on how I am now going to order our life toward this end. Rarely have I felt the need to be this focused on every aspect of my mother's existence. When I have I've slipped in and out of this acute focus flexibly and quickly. This time I made a conscious choice to observe our life, observe my observation of it and come up with a way of enhancing Mom's health while enhancing her lifestyle as well. What she enjoys is still evident even if she isn't at the moment indulging herself in these pursuits. This time I consciously set a formal goal that included working yet another type of observation into my routine, getting both Mom and me used to a more tightly run ship, checking to see how tight I can run the ship without losing hold of my mother's attention, developing the habit of observing her diet even more closely than before, as well as her blood glucose level and her blood pressure, now that I know that her blood pressure is also a good indication of an anemic episode. I was very focused when deciding how to approach all these changes.
    The week, as it turned out, was only slightly hard on my mother. It was, well, not hard but stressful for me. I can often function from relaxation in the middle of stressful conditions but I'm not sorry this week was so stressful. It kept me on my toes.
    An interesting observation I've made through the week: If my mother is led gently with mild but progressive changes inheat and cold through the seasons, which happened this year since we've spent most of it in Prescott, she (and I, as well) can tolerate, even seek, a higher heat in the summer up here in the mountains and a lower cold in the winter. The abundance of sunshine helps, even though sunshine isn't my favorite weather condition. It is my mother's, though. People here are beginning to complain about the heat and feeling the need to use their air conditioners. My mother and I, though, are just beginning to find it very pleasant all day and all night. When we were using both houses throughout the year, we never truly got used to the level of summer heat up here nor did we ever truly get used to the winter heat down there. I'm very pleased we won't be going back and forth anymore. I think both my mother and I can use some stability.
    She continues to mourn the impending loss of our home in The Flatlands but only when she's in that house. When she's here or when she's in a car going someplace down there she prefers our Prescott home. Lately she's referred to it as her favorite home, "of all the homes [she] and [I] have ever lived in."
    I'm still reluctant in dealing with my mother's business but that will be taken care of later today and tomorrow. I didn't want to deal with the demands of her business at this point and since, strictly speaking, neither of the two demans is critical, as per my definition, which counts, I closed business down for a week. I'm glad I did. My mother and I needed this week of adjustment to learn how to strengthen our combined grip on her life.
    Off the record: I often imagine, with no humility, that despite the dearth of visitors (including relateds) to this journal/website about my mother's Ancient Years and my involvement in them, that at some point someone who knows the value of this meticulous documentation will discover it and trumpet its existence to the rest of my species, not leaving out my and my mother's names, of course. I know, with my usual unabashed sense of self-possession, that this is valuable to more of my species than my mother and me and some relations. I know that what I'm doing has rarely been done to this degree of detail and confession. What appears to be humanity's shortening attention span notwithstanding, I believe this body of work will honor both my mother's and my life as on of our Contributions. This, I believe, will happen aside from the fact that doing this aids me in my job and keeps me to the task of scrutinizing my mother's life as she is living it now and as she's lived it in the past for clues to how I get us from here to there in one piece.
    The house is set up for Mom's arrival into the day. I've been doing chores as I write this, becoming excited about finding out how she's doing today, how she's going to react to an early rising time, what excuses she's going to give to try to get out of walkering, which we are going to do today m'am...
    Later.