Mom & Me Four Archive

    I feel as though I'm on top of my game.
    !Yessss!
    Later.

    The Dailies tell part of the story. We've begun an even healthier eating regimen than before and I've decided to insist on some sort of exercise almost daily for her. Today we walkered on the driveway, three laps. Although I hadn't intended this, it was so warm and pleasant that as we traipsed up and down the cement I noticed weeds coming up and did some impromptu weeding while she walkered. She was delighted. She supervised, pointing out weeds here and there. This gave her a chance to rest fairly frequently while standing up. During the entire session she sat only twice, and then for only minutes. At one point she tried to maneuver her walker onto the uncemented part of our yard so she could search out more weedlets for me to pull. It didn't work well; she gave up quickly. But, I expect she'll try again, and again, and as she gets stronger she'll be more successful. I think I'll make it a policy to do small yard chores while she walkers. It keeps her interest up and, anyway, it sounds much more interesting to be invited to "do a little yardwork with me" rather than to be invited to "walk the driveway".
    I also chose today to change out all our light bulbs, trading out 75 watters for 60 or 40 watters, 60 watters for 40 watters and 40 watters for 25 watters. She insisted on moving from room to room with me, with a chair, which I transported, so she could "spot" me. Yes, I made sure that she was a safe distance away so that if I truly did have an accident she would be in no danger. When we finished she suggested we go back to the table and figure out how much electricity we'd be saving. Overall, just with lighting, we should drop about 1/3 in our usage. I'm not sure how that will square with our bill, though, since a lot of our electricity goes to heating water, doing laundry, the television, the computer(s), cooking, fan usage (which is important, since we don't have central heating/cooling) and her oxygen concentrator. But, it was fun to be involved with her in shaving money off our electricity bill, however little it turns out to be.
    I gave her a choice, this evening, for tomorrow's exercise: Either "yardwork" or Costco. She chose Costco. I know she'll be hitting the kiosks pretty heavily so I'll plan a light dinner...maybe pick up some shrimp and we'll have shrimp cocktail and pickled asparagus spears.
    I have to confess, I'm feeling pretty smart and smug about my determination about what to do about her low HA1c. Maybe I'll be kicked in the ass by my decision, but, you know, it's enough for me that I feel confident about how I go about considering these things and coming to treatment decisions. There are going to be times when I feel at sea, I know, especially as she advances toward death. In the meantime I feel confident that, one way or another, I can stay afloat and manage her health care with as much success as necessary.
    Time for bed. We've got a busy day, tomorrow. I want to finish up the taxes this weekend and get them out on Monday, too. I'll have to be very stern with Mom regarding her interest in what I'm doing. I'm hoping I'll be able to get all the rest done while she's sleeping, then I won't have to contend with how much her interest slows me down. Sometimes it's necessary to not include her in the stuff I do to keep the business of her life running smoothly.
    Later.

    MCS e'd me this morning with the following:

I researched alkaline phas this morning and found this: "a decreased serum alkaline phas may be an indicator of a chronic disease state." Well, that fits Mom, but other than that there was no information to make me worry.

    As it turned out, though, I called her before I made it to my computer, this morning, in order to report on the doctor's office calling about the Mom's low HA1c and the glipizide thing. We've both been doing a lot of online and lab book medical research, lately, spurred by Mom's last blood draw results. We've run into so many instances of the phrase "not clinically significant" that we got a little crazy and segued into a fun little riff off it. The upshot is that we wondered how many conditions were considered "not clinically significant" 10, 15, 20 or more years ago that now garner great "clinical signficance" and vice versa.
    It's always a good idea to keep in mind that medicine, because it is fundamentally a science, is dynamic. Our current information explosion has rendered it extremely dynamic, a fact that none of us have failed to note, especially when "clinically controlled trial" results contradict one another week after week. Relying on gut instinct isn't always a good idea, either, since our "guts" are usually conditioned by our environment and our knowledge about our taken for granted environments is changing so rapidly that, for the most part, our "guts" lag behind.
    No advice, this time. Just an observation. It's a minefield out there, folks. If you're managing someone's health, step carefully and continually hone your tracking skills. And, don't mis-take the word "doctor" for the word "god".
    Later.

    So, I heard from Mom's doctor's nurse, today, regarding the results of Mom's lab work and the health review. He agrees with me that cutting out the evening dose of glipizide would be a good idea, at this time, to see what happens to her HA1c between now and her routine appointment in April. I didn't mention that upon further research I've considered that it probably won't make any difference and her low HA1c will, indeed, reveal itself to be "clinically insignificant", but, I'm going to do it anyway, since Mom's health remains stable at this time. I'll be taking her blood glucose every day, now, morning and evening, just to make sure that she doesn't start averaging in the high one- or two- or three-hundreds. If that happens I'll reinstate the glipizide and notify the doctor.
    More significant, though, is that the nurse, after advising me of the doctor's take, took a few moments to mention how impressed she was with my tracking of Mom's stats and the health reviews. She referred to these efforts as "being organized" but, well, that's not really what it is. It's making sure I'm aware. My guess is that she's never seen this complete of a caregiver's efforts on behalf of her charge's health. This is precisely why I publish my records online. Although my efforts were initially ignored and sometimes actively opposed (because I'm a lay person and what would I know...I mean, jesus, I might start noticing trends and making medical decisions based on this information and, well, you know, only professional medical personnel are qualified to do that) for some years, finally the medical profession is getting it: That recording such as this, even from a lay person, is valuable not only to the caregiver but to medical personnel, isn't possible unless one's charge is "enjoying" institutional care and, often, such records are not utilized to their fullest potential by those collecting and "charting" the records. Not only that, but when this type of recording is as complete and well-considered as mine, to the point of the caregiver offering suggestions about medical treatment, medical personnel can seriously consider such suggestions in the context of what they know.
    The point is, I'm constructing an inroad for all those caregivers currently (and who will in the future be) considered maniacally obsessed with matters "with which they should not trouble themselves" (as one doctor told me a few years ago). It's important, if one has the time, to do what I'm doing: Record, record, record. This type of partnership, which, presently has to be forced on physicians by the caregiver, will, I think, eventually transform medicine so that it becomes both more user friendly and more practice friendly. Doctors will realize that observant patients and medical advocates, if in the habit of meticulously documenting pertinent information about themselves or their charges and reviewing that information at regular intervals, can be relied upon to help medicine practice in a more well-informed, beneficial way.
    So, if you've been reading me for awhile and are a documenting caregiver who still isn't appreciated by your charge's medical personnel, continue trusting your efforts and your well-informed instincts and don't give up, even if you're currently being told that what you're doing is unnecessary and/or troublesome. Medicine will, mostly likely and eventually, not only applaud your efforts but solicit them.
    The tide is turning. Slowly, almost imperceptibly, but it's turning.
    Haaaa-lay-lu-yah!
    Later.

...for my mother. I checked on her at noon. She was snoring. The Little Girl called to her and she didn't budge. I lightly ran my finger over her right arm and she didn't react. She looked peaceful. I let her sleep.
    At 1300 she was dreaming. I let her sleep.
    At 1330 she was snoring again. The Little Girl jumped on her bed and settled down behind her knees for a nap. I let her sleep.
    Finally, at 1400 I called her. Vigorously. She awakened. She's in clean pajamas and clean underwear and clean bedding. I changed all that out at 1000 when she went back to bed.
    After I gave her the first of her pills and we chatted a bit, including twice when I cautioned her not to lay her head back on the pillow, she finally said, "I think I'd rather sleep the day away."
    "Mom, it's 1400. Are you sure you want to do that?"
    "I'm sure."
    "When do you want me to call you?"
    She looked at the clock. "It's two, now. How about seeing how I feel at four?"
    "Welllll...okay. What the hell. Why not have a sleep day?"
    "I don't know why, but I'm soooo tired today."
    "You'll probably only get in one meal and a snack, and probably only half your pills."
    "I might stay up late tonight."
    "You might."
    And then, again...
    It's been a long, long time since she's had a sleep day of this magnitude. Since her labs look fairly good and I've satisfied myself that I don't need to worry about anything on them, I'll go ahead and let her sleep. Gives me some time to do some shredding, which has been piling up since I started rifling papers out for taxes. I could probably finish the taxes, too, but what's left is the computer work and, except for this post, I'm not really in the eye-mood for that. I came on with the idea of explaining my meeting with the Jabberwock, but I think I'll wait until later. Already my eyes are swimming here at the screen.
    Just wanted to mention, today is going to be even slower than I thought. I don't think I'll get her out on the driveway.
    I did, by the way, hydrate her well and check her for leakage before letting her fall back to sleep.
    She's fine. Her color is good. I'll let her sleep.
    Later. Probably not until tomorrow.

"the jaws that bite, the claws that catch;" --Lewis Carroll
    Remind me to mention that I now know the identity of the Jabberwock.
    Later.

    First, I'm definitely screen-glazed from yesterday and Monday. Second, I suspect it's going to be another slow day for Mom. She's already been up once, at 1000. She went to the bathroom. I scurried (having just arisen myself after a fairly long night online researching) to get everything ready, headed back into the bathroom to begin her bath, and she was headed back to bed. I allowed this, seeing as how she retired at 2345, her light going off at 0015. I, as well, was up until a little after 0200, looking for medical "stuff", working to satisfy myself that I needn't worry about her low HA1c.
    Maybe I'll be able to get her out on the driveway today. Maybe not. I'm not going to worry about it. I've got a headache and I'm moving veeerrrry sloooow, today.
    Oh, yeah. The reason I came back over here: Stat ketchup is being served over at The Dailies.
    I am, by the way, no longer feeling low about the wind leaving her sails thing. Funny how medical research does that for me, as well as scrutinizing my mother and noticing that she's not sprouting horns or other bizarre appendages, nor is she green around the edges.
    Later.

...and spent much time researching the possible causes of low HA1c when blood sugars are not low. It seems that the medical community is only a little less confused than I. Of the few diseases that seem to display abnormally low hemoglobin, all are rare, a few are genetic and my mother doesn't appear to have any. In addition, in a study of 200 found instances of this condition, 70% were found to be asymptomatic and unexplainable (as yet). Of the two diseases most commonly found to display this quirk, my mother has neither: The first is polycythemia, a condition in which the bone marrow manufacturers too many red blood cells. The second is sickle cell anemia, which my mother doesn't have. There are also a couple of very rare genetic disorders which display this phenomenon, all of which "present" in early to mid-adulthood. There wasn't much to be found anywhere about what my mother is "presenting". Usually, abnormal HA1c in the presence of anemia is higher than normal and comes back into line when the anemia is controlled.
    It also appears that my guess that this might be linked to her Chronic Renal Failure is probably incorrect; at least there is no literature, at the moment, indicating such. Thus, I understand why my suggestion of dropping her glipizide by half was ignored by her doctor. This also explains why her renal indicators are good overall and, for her, excellent, all within normal range except her BUN, which is only slightly out of normal range. My guess is that the doctor will probably let this go, maybe take another HA1c at our appointment in April to see if it is dropping further or remaining steady. I haven't heard from him at all, so my guess is that I needn't worry about anything in her blood tests.
    I tried to get her out for a walkering session yesterday on the driveway but she was as intractable as a boulder. I didn't push, since I was still in the middle of research.
    I've got a little stat ketchup to perform.
    Later.

...that the wind is gently but assuredly leaving my mother's sails has taken some wind out of my sails. I doubt that I'll be back tonight and might take a mood vacation from writing here for an extra day or two. I will post stats and meals over at The Dailies. As a reminder, today is a non-stat day.

Faxed to Doctor: 2/6/06

Blood Pressure
    Taking her blood pressure has been haphazard, although somewhat less than it appears. On 1/09/06 the meter batteries died. When I changed batteries I lost readings from 12/30 - 1/09 that I hadn’t recorded on my own chart.
    I’ve been administering 10 mg lisinopril twice a day on 1/10/06: When she arises and at bedtime. Since she tends to sleep 12 hours at “night” I figured the best way to even the dosage would be to give it to her immediately at either end of her night sleep. This seems to have settled her BP. It’s even a bit lower in the A.M., now, when it irritates her for me to take her blood pressure and it’s usually high. No averages this month due to spotty readings. I’m now taking her “stats” every other day...sometimes skipping an extra day here and there. At the moment this seems to work well.

Blood Sugar
    Very good control. I notice, though, that her A1c is even lower than it was last time. Believe me, this hasn’t been because I haven’t expanded her diet. In fact, over the holidays I did lots of baking and served desserts and rich side dishes. Sandwiches on her beloved white bread have been frequent, as well as canned fruit packed in syrup, one of her favorites. I also upped the amount of orange juice she receives in the morning. I’m not sure whether to be concerned about her A1c. I’m wondering if this is what the FNP we saw last January meant when she said that Mom’s diabetes would eventually “go on vacation” because of her Chronic Renal Failure, although Her BUN looks better than usual, this time. Her actual blood glucose numbers look good...never running really low, sometimes closer to 150 than 100. I will continue to supplement her diet with refined carbohydrates. SEE “ADDITIONAL NOTES”.

Urinary Issues
    No change. Macrodantin continues to keep her UTI free.

Hydration
    No change from last month.

Energy Level
    No change since last month. She’s up and out more than last winter; continues to sleep 12-14 hours per day (including midday nap).

Skin & Circulation
    Both continue to be excellent. No changes.

Appetite and Diet
    Both remain excellent. No changes.

Dementia
    Remains unchanged.

Will & Spirit
    Remain strong and high, respectively.

Medication & Supplements
    I’ve boosted her, yet again, to 2 tablespoons Benefiber a day.
    A week after her last health review (12/22/05), I added an Omega-3 Fish Oil supplement, one 1200 mg pill, to her diet, since she doesn’t like fish. Although you and I are not concerned about her cholesterol, I figured it couldn’t hurt.

CHF
    Furosemide administered 4 times last month due to torso and feet swelling. See BP report.

COPD
    She had a little trouble breathing toward the end of last week...allergies and lots of nasal drainage. I put her on tanked oxygen during the day because of mouth breathing, which is unusual. That seems to have cleared up as of yesterday.

Bowel Movements
    Continues to eliminate every 24-72 hrs; usually every 48 hrs. Fecal consistency, volume and ease of elimination remain good to excellent overall.

ADDITIONAL NOTES:

1. I am concerned about her A1c, which I discuss in “BLOOD SUGAR”, above. Please note that, this time, the reference ranges are different, due, I imagine, to the type of test packet used. She is reading below normal, though, despite “good” Blood Glucose readings. I’m wondering if I should drop her evening glipizide pill for the next couple of months and see if that raises it by April 4th, when her next routine appointment is scheduled. I WILL NOT DO THIS UNLESS I RECEIVE CONFIRMATION FROM YOU! If I don’t hear from you, I’ll assume it’s not a good idea.
2. In the recent lab report I notice that her Alkaline Phosphatase is low. I’m wondering if I should be concerned about this. My lab books only refer to a high Alk Phos as “clinically significant”. Her C02 is also slightly high but I note in comparing past reports that it’s comparable to previous “normal” reports.
3. If you feel the need to see her before 4/4/06 for any reason, let me know. This will not be a problem.

...over at The Dailies last night...I was too tired to make it over here. You'll notice there was some movement outside Saturday and Sunday. I forgot about that today and when she decided, 2.5 hours after breakfast, that she was going to go down for a nap, I harassed her a little, "threatening" her with a walk on our driveway instead of a nap, then remembered, oh, yeah, she's been moving the last few days. Maybe I'd better let her be. So I did.
    Got the results back from her 2/03/06 blood draw. Surprising. Although things haven't changed too much, her Hemoglobin A1c is startlingly low, despite all the goodies she had over the holidays and the fact that I have not been "careful" about refined carbohydrates. I left a phone message for her doctor to call if I should worry. I also included a discussion of this in her health review, which I faxed today and will add here a little later. I'm wondering if we've actually begun the "vacation" part of her Chronic Renal Failure, now, and if this is the indication: That, despite her normal to relatively high blood glucose readings, lately, especially in the morning, her body needs more glucose than she's been getting. She'll be thrilled to hear that! I thought about it, too, and asked her doctor if maybe it was time to cut her glipizide in half, dumping the evening dose. That might raise her A1c without me shuttling around to feed her any more refined carbohydrates than she's already getting. Of course, her blood glucose numbers will be coming in higher in the morning than they have been, but, apparently, and believe me, this is just a guess, this is one of those "differences" between type 2 diabetes, developed in old age and type 2 diabetes developed when one is in one's prime.
    There are a few other marginal out of range readings, as well. For the first time I've got a reading that's in range for Prescott and Out of Range for Mesa, so I added a new color into the blood test. Her BUN, although also marginally out of range, is better this month than usual.
    Her MCV result, which is usually in range (although in high range), was a touch out of range on the high side on Friday. MCS said this can happen when the patient is having trouble breathing and, sure enough, Mom has been choked with the allergic reaction of sinus drainage for a few days, including Friday. I've had her on tanked oxygen during the day because of this. However, the condition cleared up yesterday. Today she's got a little lung congestion and I gave her 200 mg Mucinex for that just before she went down for a nap. This congestion was obviously of the in-lung, not around-lung category. Today, though, she hasn't been mouth breathing when sitting.
    I'm not going to be able to Fed-ex our income taxes until Wednesday, probably. With Mom being amenable to getting out and with the rush to compile her BP, BG and Health Reviews I'm a little behind, especially since our last couple of tax sessions have involved going over taxes in years past, at Mom's request. But we're still doing good on this.
    We've also done a lot of movie watching over the weekend. This time, Mom liked all of them that she watched: In Her Shoes, Flight Plan and Lord of War, although she only saw the beginning of this one. I started it too late and she decided she wanted to take a nap. I was so impressed with it, though, that I bought the DVD. We watched the special features included with the edition I bought yesterday afternoon and her interested was rekindled in the movie, so I'm sure we'll be watching it again. I also rented The Aristocrats which she didn't watch, her choice. I knew it was going to be a toss up and purposely read the back of the box to her and told her what I knew about the movie. I also told her that I was going to watch it alone first, so the she wouldn't ruin my first viewing of it, explaining to her how she manages to do this. She laughed good-naturedly. After I'd stayed up really late Saturday night to watch the movie I told her what the joke was and described how the middle part was embellished by a variety of comedians (including a mime, my favorite rendition; my second favorite rendition was Martin Mull's take on it involving the African tribe). I used three syllable, polite-company words. She got the idea and, as I figured, wasn't interested in watching it.
    I think today is going to be pretty slow and motionless for her. She spotted the In Her Shoes video and swore she hadn't seen it but would like to, so we'll probably be doing that when she awakens. I'm hoping she'll be interested in seeing Lord of War, too. So, I'll be putting off finishing up taxes until tomorrow. I think I'll do it when she's not awake, so I'm not slowed up anymore.
    You know, her low HA1c might also explain her low energy level, of late. Although it's been higher than last winter, because of the warmth and brightness of this winter I've been expecting her to be a bit more energetic than she has been.
    Anyway, I think I'll set up the Health Review for this month, then do a few non-daily chores while Mom's still sleeping.
    Later.