Saturday, June 17, 2006


Looks like today is going to be a protracted sleep day.

    I was back from my errands at 1045. As often happens, by the time I entered the house Mom was in the bathroom. I think she hears the car pull up in her sleep. I was very pleased. That would put her sleep-time at about the 12 hour mark. She hadn't leaked through, which didn't surprise me. I announced that, if she wanted, we could do a "short bath", which involves rubbing down her entire surface area for stimulation, but using an unsoaped, warm, damp washcloth on most of her.
    "I'm not up yet," she announced.
    "You mean you want to go back to sleep?"
    I guess she thought I might try to wrangle her into staying up. She responded, "I'm tired today. I don't know why."
    "O.K. Well, listen. You're also dehydrated from yesterday."
    "How do you know?"
    "You didn't leak through."
    "Oh. I didn't, did I?"
    "So, why don't you come on out to the kitchen, let me give you a glass of water..."
    "How about some orange juice?"
    Oooh, cool, I thought. That might actually get some energy stirring inside her and get her moving. "O.K. Orange juice. Good idea. Then, if you're still interested in sleeping, I'll let you go back to bed."
    "Oh, I'll still be interested in sleeping, all right."
    She was. I was wrong about the orange juice, although glad that she drank it. I left the Benefiber out, this time. No reason to add insult, today, to yesterday's "injury".
    She stayed up about 45 minutes, though. We chatted while I put groceries away, talked about what I might prepare for possible company on Monday...I was so sure she was going to remain up that when she headed back into the bathroom I made preparations for bathing. When I entered the bathroom in her wake, she was rising off the toilet.
    "No, no. You always sit there when you're bathing. Stay put," I ordered.
    "I'm going back to bed."
    "Are you sure you want to?"
    She gave me that comic, "What do you think?" look, accompanied by her tight lipped, ironic smile. "I've never been so sure of anything."
    It took her awhile to get in and settled. I'd wager that she probably fell asleep about noon. I checked in on her a little while ago. She's on her back, snoring and dreaming. I considered getting her up but thought, nah, I'll give her a sleep day, today, for whatever reason. And, we'll forget about stats, until maybe evening. Maybe we'll have a stat free day. She's adamant about the sleeping part, at least. Except, of course, if I get nervous, I'll slip into her bedroom, nudge her awake and check back with her determination. Usually, on days like this, the second up-'n'-at'em is the charm.
    So, needless to say, while I keep the house running, consider cleaning for company and do a little (but not so much that anyone would consider that I'm having a change of nature; housework is not my strong suit), I am continually thinking about sleep: Her sleeping, sleep in general, sleep in particular. I've been having a running correspondence with the author of the The Yellow Wallpaper about a variety of aspects of caring for someone with dementia, one of the most prominent aspects being how much sleep these people can pack under their belts. Truth is, until corresponding regularly with her and learning more about her mother, I always thought This Sleep Thing was an extension of my mother's natural inclination to "love the sleep, the dream". Today, though, while considering her sleeping habits against those of my new friend's mother, I'm wondering, now, if most people with dementia sleep a lot. It would make sense. Sleep is when we set ourselves to rights neurologically. People who are sleep deprived eventually begin having delusions and hallucinations and becoming ineffective in their unnaturally extended awake life. For this reason, sleep deprivation is often used as torture. Maybe, I'm thinking, it takes the brain longer, when it's operating out of the neurological quirks of dementia, to make sense of what it's taken in during its awake cycle; in part because of the confusion caused by this very information. I'm also wondering if brain functioning is much less stressful for the demented during sleep time than awake time. I know it is very common for my mother to awaken and think that what she dreamed is what she experienced. She usually comes around out of this but, sometimes, the life she lives in sleep is so pleasant and has such a hold on her that she cannot be talked out of its in-the-awake-now reality.
    Just wondering. I think I hear her making waking up noises. Or, maybe not. Think I'll go check.

Friday, June 16, 2006


Most of today...goodness! I'm actually writing about "today" today!

    Anyway, most of today has been involved in awaiting and living through the bowel cleaning I set in motion two days ago with a mild dose of laxative and extremely high fiber foods since. If you care to, you can read about it, in disgusting detail, over at The Dailies for today's date. I was beginning to think, after waiting so long for the event, that she wasn't really stuffed with shit and the laxatives and fiber had been unnecessary. I'm glad I was wrong. She definitely needed a colon cleansing.
    We didn't even walker today because Mom spent the entire day feeling as though she was going to eliminate any minute. She didn't want to risk a shit walk, and I didn't blame her.
    So, that's pretty much all we did all day; wait for Movements. We were rewarded. Strange day, though. Usually these things happen by surprise. I can't recall ever spending an entire day waiting for her bowel movement(s).
    She was in very good spirits just before retiring, which she insisted on doing after The Cleansing. I didn't stop her, even though we'd had other plans. I mentioned that she must be feeling 100% better, now that "it" was over.
    "Make that 1,000% and you'd be closer to the truth," she said. Episodes like this remind me of the accidental colonic that was provoked, doctor's orders, before the colonoscopy and my decision, after a discussion about what I observed as its effects with her hematologist, to induce this on occasion (the type of occasion mentioned in the immediately previous link). Despite my intentions, I never followed up on doing this. Usually, it happens spontaneously, as it did today. Sometimes these spontaneous episodes are extremely uncomfortable, as the one discussed in Love and All That Shit. I'm wondering, after the last few days and their culmination in today, if it might not be a good idea to scare this intention up out of the pile of all my good but forgotten intentions and resolve to clean her out every six months or so, and/or whenever I think she's probably carrying a load. If I do it easily and gently, it certainly couldn't hurt.
    Over the years I've come across lots of information about bowel movements: Everything from the assertion that colonics are not necessary, the "toxins" alternative healers like us to believe are slowing us down aren't really doing this, their just waiting to be eliminated in a normal fashion; to the belief, recently asserted in that book phenomenon about everything you should know about health care but don't (which actually turned out to be an expensive advertising pamphlet meant to solicit even more expensive memberships to the author's website) that the "normal" person should be having bowel movements up to six times a day. Can you imagine that? When would you get anything done?
    My feelings about bowel movements are pretty much seat of the pants (horrible pun, I know, but I simply couldn't resist it) ideas based on personal experience: I always feel better after I've had a bowel movement, even if this feeling is so common that I rarely notice it; and, I always feel super after I've had a bout of diarrhea, completely cleaned out and ready to go. Although I almost never experience classic constipation (being constipated, for me, means I've missed my daily bowel movement), when I was still menstruating I would become "constipated" the day before my period started. After the first bowel movement, which usually came right on the heels of the beginning of the flow, always ushered in a feeling of complete body relief, even if I was suffering cramps at the time. I can't help but think that when my mother gets clogged, although she claims not to be able to tell, that she, too, probably feels sluggish and, well, shitty. So, I'm thinking that the occasional very gentle cleaning, much like I engineered over the past few days, might be a good habit to develop.
    Of course, I would not do this if she was experiencing a health crisis of some kind. But, you know, as part of her mundane health regimen, it might not be a bad idea.


I "made [her] do it".

    Her words, ripe with disgust, for the short (one lap, no rests) walkering session I engineered again today within the hour after she completed breakfast, which seems to be an optimum time for getting her moving.
    She's, obviously, taking a wry attitude toward increased movement. After she'd eaten, read her newspaper, leafed through a couple of tabloids and indicated she was ready to move to her rocker in the livingroom, I piped up, "Why don't we go outside and walk..."
    She interrupted..."the plank."
    I had to laugh. She doesn't see any reason, anymore, for moving much beyond her usual household haunts: The dinette, the livingroom, the bathroom and the kitchen. Although, out of habit, I thought up a brand spanking new encouragement, "Let's work some of that rust out of your joints so you can enjoy the company we might be having over the next month,"...
    ...her response was, "I can enjoy them just fine sitting down."
    And she can.
    I don't cajole anymore. She's too smart and too alert for that, or for all the standard reasons that make sense to those of us who are not yet Ancient and those Ancients among us who still enjoy the blessings of lots of energy and physical verve. And, anyway, our life together is much more pleasant when I don't cajole. I know, besides, that she is no longer convinced by all the politically correct arguments. She's looking at life from the other end. What the rest of us consider true is mere chimera to her.
    I mean, let's face it: The woman will be 89 this year, she's become increasingly sedentary over the last four years and her health is, lately, improving, with no effort on her part (although lots of effort on mine, but, you know, that's my job and I like doing it). Even though I can think of some perfectly debatable points, I'm not interested, anymore, in arguing with her reality. Every portent seems hollow, ridiculous, even, when she's satisfied with the way things are.
    Two of the hardest caregiving lessons to learn are when well enough is well enough and when to leave well enough alone. These lessons are hard for the professionals and avocationalists in the field, alike. You can't learn them by applying sense; or logic; or well-researched, well-intentioned, medically and socially agreed upon advice. You learn, finally, by surrendering, by listening to your Ancient One and remembering, it's her life. As long as she remains present in it, dementia or not, she's going to do what she's going to do and that's that. Come to think of it, deep into dementia she's going to do the same. Beyond a certain point, you can no longer convince her of the opposite of what the several years she has on you have revealed to her. You can't successfully counsel, or connive, or even legislate whatever you think is better for her than she thinks is good for her. You finally have to decide to sit back and enjoy the ride.
    It's not easy. I'm lucky, though, that she humors me. In return, I consider it my sacred duty to humor her. Thus, although she agreed to the walkering today, I didn't push her beyond the distance she wanted to cover. I have a feeling, though, I will never completely accept her preferences. I imagine that on the day she dies, an hour or so before her final breath I'll be brightly suggesting to her, "Why don't we go outside and walk..."
    ...and she'll interrupt with, "the plank."
    On that day, she'll be right. Just as she is now.

Thursday, June 15, 2006


All pertinent schedules have been updated...

...and all templates have been changed to take you directly to the newest Health Review and Current Med & Supplement Schedule updates. I've linked the current med schedule here because they are posted for the days on which they took effect, in May of this year.
    Updating those damned templates takes awhile; I'm running a little behind schedule on awakening Mom. Better hop to it.


Health Review

[Faxed to Mom's doctor 6/15/06 AM]

Blood Pressure:
Her BP seems to be coming down this month from previous months, which, so far, seems to be a fine development. Otherwise, no significant changes.

Blood Sugar:
As of 5/10/06 she’s on two 10 mg glipizide ER per day; one before breakfast, the other usually before bed. Seems to be under good control. I decided to do this because her hemoglobin was doing so well that I figured, from what I read, her HA1c would probably be performing more normally and her system could handle more medication control.

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

No change from last month.

Energy Level:
She is sleeping a bit more than usual: On average about 15 hours per day. She is, however, somewhat more active than usual when she’s up.

Skin Condition and Circulation:
No more kitten scratches. Only slight change (not in size, but Mom’s been picking at it, lately) in the tiny patch on her right upper forearm. I don’t think it rates consideration until her next regular appointment.

Appetite and Diet:
No changes since last month.

Remains unchanged.

Will and Spirit:
Remain strong and high, respectively.

Medication and Supplements:
Received adult buffered aspirin and ibuprofen a few more times than usual for minor aches and pains and one episode of twisting her knee. Except for the addition of the second glipizide per day as noted above, these remain the same as before.

Furosemide administered 5 times this period due to torso and feet swelling and elevated BP that wouldn’t relent on its own. See BP Report.

Remains unchanged from last period.

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. Rare use of Phillip’s Milk of Magnesia as a laxative.

  1. I’m pleased to report that her anemia, over the last two months, has come under excellent control, which I’m sure you’ve noticed from the monthly blood draw results. I’m sure this is due to her receiving three Niferex-150 capsules a day (two Rx’ed, one OTC). Thank you for suggesting this! I’m truly delighted about this! I also note that her kidneys are holding their own, for which I am relieved.
  2. When we last saw you, you suggested her next appointment should be in “August or September”. I held off making an appointment at that time because I wanted to see how her body adjusted to the extra iron. Since she is doing so well, I’m thinking, unless something unusual should happen, early September looks good for a regular appointment. Her glipizide Rx runs out then, and we will need to visit Phoenix to renew her military ID card. As well, from what I’ve read, I’m sure that since her anemia is now under much better control, so will be her HA1c, which, as you will recall, was running low. I’ll call on Friday, 6/16/06, to make this appointment. If you’d prefer to see her in August rather than September, please let your office staff know. Otherwise, good health and God willing, we’ll see you in early September!
  3. The reason I didn’t make a report on the occasion of last month’s blood draw is that everything was going nicely and I figured I could catch up this month with you. Everything is going even better, this month. I’m very pleased! She will, by the way, be 89 on August 2 of this year. At this rate, I see no reason why she shouldn’t make it into her 90’s. Thank you and your staff, as always, for your excellent support. Considering my mother’s health profile and my insistence on staying on top of her medical care, I could not wish for a better PCP than you, Dr. Coury, as my mother continues her journey through her Ancient years.
    Just a minor comment. It seems I forgot that this new glucose meter only stores 100 readings. It had dropped all readings from 3/28/06 - 4/16/06 when I downloaded them this morning. Oh well. I've got all that stuff over at The Dailies, but I didn't include an addendum of the dropped readings to the auto-report issued by the glucometer software; this would have involved a couple more hours over the time it took to compile the BP readings. There were no unusual blips and the two months covered gave an excellent review of her BG.
    Guess I'd better keep on my toes with the new meter!

    I'll be awakening Mom around 1300, the 12 hour mark, if she hasn't already risen. I think, right now, I'll see if I can't quickly update her Medication & Supplement review.


Skipping last month's health review for Mom's PCP...

...was definitely a mistake. I tend to forget how long it takes me to compile her blood pressure chart. It takes even longer when I put it off for a month and a half! I'll finish up tomorrow with her blood sugar report. The health review is done, but I'll wait to include it here until it's faxed, with everything else, tomorrow. I noticed, I need to update her Medication and Supplement chart, as well, to include the switch back to two glipizides a day. And, I forgot, at the time of the last health review, to update the BP averages, so I've got a little work there. I'll also enter her stats for 6/14/06 tomorrow, probably later rather than earlier, although I don't think the delay is going to cause any of my readers any problems!
    I did want to mention that I was able to coax Mom out onto the driveway for a very limited walkering session. At the same time I decided to try Mr. Man on the leash, again. I was so busy tending to him that Mom just took off and did the lap down and back on her own in fine fettle, without a rest. No knee and back complaints, either. We'll try two laps, tomorrow.
    When we talked, yesterday, about her possible blood draw results I told her I was expecting her to no longer be anemic. I had good reason to expect this from observing the color of her nail beds and her overall peachy-keen complexion of late, although I mentioned neither of these. She doubted my expectations. When I awoke her this morning and gave her the good news, she beamed and said, "Well, I guess you can't count this old gal out yet!"
    That's for sure.
    I may not report much, here, tomorrow, between finishing up and faxing Mom's health particulars to the doctor, tending to Mom and whatever etceteras crop up (there are always a few every day).
    Seems like I'm always a few intentions behind but, well, my intentions, even the behind ones, are good.

Wednesday, June 14, 2006


Yes, yes, yes, yes, yes!

    Test results are up from Mom's blood draw yesterday! We're in the Army now! The three iron capsules have paused her in the door frame of Prescott's non-anemic blood profile and placed her just past the threshold of Mesa's non-anemic blood profile.
    This does not mean, of course, that she's no longer Anemic Due to Chronic Disease. It doesn't even mean her ADCD is in "remission", if such a term can be applied to ADCD. Considering the mega-dose of iron supplements she's taking just to gain entrance into what could be called a non-anemic state, essentially what we've done is create artificial conditions under which Mom's blood can manufacture the hemoglobin it needs and keep her blood cells looking and operating at a relatively normal rate. You can see, from her BMP, that her Chronic Renal Failure remains pertinent to her health profile, although it is also holding steady, which means that, well, she's Ancient and her body is operating probably as well as her Ancient body can. Thus, her ADCD won't go away. But, we're controlling it nicely. Hallelujah!
    I feel the need to take a moment to stress, yet again, how important it is, if, as a caregiver, you have the resources and the access to your care recipient to do so, to insist on educating yourself on your care recipient's health profile. Most importantly, learn how to read those tests, especially the blood tests, since these are usually primary when a physician decides what sort of treatment to prescribe. Take as active a role as possible in understanding both symptoms and treatments and in suggesting some treatments and refusing others. Do not apologize for your efforts and do not express to the doctors with whom you are dealing feelings of silliness or inadequacy (which will, occasionally, overtake you in this role). If you are wrong or less well informed than the doctors as a result of your non-medically-educated study and consideration, simply encourage and take instruction from them, check out what they have to say, take it into consideration, change your position if necessary, without apology (remember, doctors don't apologize for their mistakes, they take the money and run), then continue as an active and better informed advocate and provider of your care recipient's health care. Whether or not your PCP chooses to acknowledge this, by doing so you are supporting the physicians' best efforts and they are lucky that they have your input.
    If you need an example to bolster your confidence, consider the following:
    As of the results from the Blood Draw of 3/24/06, her physician, at her next appointment a bit more than a week later, believed that "she's bleeding a little somewhere, again" and attempted to launch yet another campaign for yet another colonoscopy. I felt that the results of her latest blood draw showed that this course of action would have been unnecessary and most likely, yet again, inconclusive, not to mention "torturous", as the colonoscopist pronounced Mom's last (and only) colonoscopy experience. Thus, he further suggested increasing her Niferex-150 dosage. I believe the evidence suggests that this course is exactly the treatment needed to control my mother's ACDC into the "normal" range. I also believe the doctor would not have considered this possibility if I hadn't refused his recommendation of another colonoscopy.
    I think the evidence also shows that increasing her iron supplement earlier would have worked, at any past point in my mother's life, as well as it is now, if it had been suggested and followed. It is unfortunate that this didn't come up but, medicine being the inexact and fumbling science that it continues to remain, I'm also not inclined to castigate myself or my mother's physician for the delay. The main reason I'm not inclined to cry over spilt milk in this instance is precisely because I was fully involved in my mother's treatment. By virtue of my involvement, I know that medicine is a science fraught with inexactitude and fumbling...I'm prone to both, too, and my inexactitude and fumbling is as much to blame as her PCP's for not thinking earlier of increasing my mother's iron supplementation. You lower your head, examine your tracks, you discover your mistakes, correct them, raise your head and continue on.
    Trust your care recipient's doctors, but trust them only as far as you can throw them. At that point, trust your own informed considerational ability to pick up the ball and take it further. Is this risky? Well, yes, of course, especially if you don't do as much as you are able to apprise yourself of your care recipient's profile. It is no more risky, though, I think my experience shows, than what the doctors are likely to do without your consideration and suggestions. As well, you have an advantage the doctors do not. You are dealing with only one 'patient', thus you are automatically going to put more interest and thought into your 'patient's' profile and treatment than the doctors are. If you can't find a physician who is willing to factor your involvement in your care recipient's medical care into his treatment, find one who will, if you can (probably harder than usual in rural situations). If you can't find one, be prepared to take a heavier risk burden upon your shoulders in regard to caring medically for your care recipient. Remember, doing this will be no more risky than leaving your care recipient in the unsupervised care of physicians.

    So, while working on this post, I checked in on my mother at her night-sleep's approximate 12 hour mark, 1300. "How about another hour?" she asked. I can do this. I'm going to try to get her out on the driveway today for a follow-up-to-yesterday's-activity walkering; no doubt a slow, gentle, short, loaded with rests session. I don't want to stress her, but I also want to encourage her body to handle more movement on a daily basis. We'll see how it goes.
    In the back of my mind I continue to consider that a few days a week at the Adult Center would help. I still have to wrangle with the VA over that, though. Maybe tomorrow. Looks like most of today, which will include preparing a health review for her physician, is spoken for.
    I am, by the way, immediately after publishing this post going to reference it in the links section, to the right, under Mom and Me Too Special Posts, for the convenience of any of my readers who needs a Medical Advocation Confidence Boost. It will be entitled Argument for Medical Advocation. Keep it in mind when your medically attuned spirits start to sag.
    Footnote: As of 1400, Mom asked for "just another half hour". She can have it. I guess yesterday pushed her to her Ancient Activity limit.


Although this is not much past my usual, of late, evening post time...'s been a long, active day, started early (for both of us, although Mom refreshed herself with a long nap; I didn't have that luxury), I am exhausted and still want to arise earlier than usual and collect the lab results of today's Blood Draw (yes, finally). I intend to review the day, of course, but some of said review has been posted at The Dailies, the contents of which I don't intend to repeat but upon which I will probably expand. In the meantime, I want to mention the post about today's today's bowel movement. I will, especially, be commenting on that over here...probably tomorrow, although I also intend to send her PCP a health review of the last few months, to which I didn't get around last month. You'll understand more, later, when I expand upon her bowel movement, especially why I didn't get upset about it and absolutely did not consider contacting her physician about it.
    Whoa. I'm tired. Cat tired.

Monday, June 12, 2006


I did it.

    I finally got back over to Caring. About Food. I made such an incredible, innovative seafood sauce I had to publish it. I added the changes to the dessert I made for the dinner that involved the seafood sauce, as well.
    That's all. Just wanted to let everyone know I'm back, for a few moments, anyway, in the food saddle, again.


About 0300 this morning... mother awoke to go to the bathroom. This isn't unusual. Normally the routine is:    Last night, though, circumstances changed. Before going to bed I accidentally made myself a cup of caffeinated coffee rather than my usual decaf, the warmth of which usually soothes me into slumber. I realized this when, upon retiring, I simply couldn't get to sleep so I arose to confirm, from the location of the coffee scoop, that I'd raided the wrong canister. So, when I heard Mom rousing to her bladder, I was up and on my well caffeinated feet before she rose from the edge of her bed.
    "My, you're up late," she commented.
    "Well, I was actually in bed, but I accidentally drank caffeinated coffee and I can't sleep."
    "That'll do it," she said.
    Once we were in the bathroom she said, "I couldn't sleep either."
    This isn't exactly true. When I checked on her before retiring she was completely relaxed and gently snoring. I didn't question her, though. "Well," I said, "I'm thinking of getting back up. Want to join me?"
    Spriteliness overtook her. She practically raised off the toilet on her own in it's wake. "You know, I love staying up late."
    "I know. Let's see if we can cause some trouble while everyone else is still sleeping."
    "Good idea."
    We were up until dawn, maybe a couple of hours. We talked, a little, about those dead relatives she'd been dreaming into life while she was sleeping. We searched the cable for Bette Davis movies or something else equally fun. No luck. I suggested we read a little further in The History of Old Age. We decided this would be a good time to examine all the plates in the book that we usually skip. Thus, we ushered ourselves into an extemporaneous conversation of what old age looks like to those who are yet to be Ancient. We also shared our sense of our own devilishness for being up at such an unseemly hour in excited spurts of conversation about how everyone else was dreaming the world into existence, wondering if we were in a "zone" where we could alter their creation without them realizing it, stuff like that. At Mom's suggestion, since our being up shimmered with nefarious possibility, we also had another piece of the luscious spice cake I'd made yesterday afternoon, this time without whipped cream. Thus, I'm expecting her blood sugar to produce a fireworks display when she finally awakens. What the hell. That's what nights like last night are for.
    I didn't bother to check the clock when we finally retired. It wasn't yet light but we could see the intention.
    Thus, it will come as no surprise that I'm letting Mom really sleep in. I figure, at about 1500, if she isn't up on her own, I'll call her. The business to which I'd planned to attend is languishing in that late-start area of muddled magic that plays havoc with the best laid plans (of mice, men, mothers and daughters). I'm considering today part of an extended Sunday. I imagine my mother will, too.
    Nights like last night don't happen often for us, so I like to take advantage of their air of mystery. The day after is rather like the day after a slumber party, groggy but satisfying, especially if you have some time to hash over the dregs of the party with your party mates.
    Lucky me, I live with my party mate.

All material copyright at time of posting by Gail Rae Hudson

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