Catching up - Call to Mom's cousin-in-law
    About a month ago Mom's cousin-in-law wrote a letter addressed to both Mom and me asking why she hadn't heard from us in so long. In the letter it was apparent that she'd allowed the worst of her imaginings to take hold and expressed her fear that Mom had become one of the elderly infirm who was no longer capable of remembering family, let alone contacting them.
    The truth is, neither of us is particularly good at keeping up with the relatives (one of the reasons I began this journal). But, finally, last weekend, I called this cousin-in-law while Mom was napping to let her know how we are.
    She and I had a brief conversation in which she let me know she turned 90 this year and, when I asked her how she was, she told me, "Being 90 is no fun." It's interesting to me how Mom's family states this without embarrassment and yet continues, with stalwart heart, moving on down the road. I like that while all of them are proud of their longevity they pull no punches about the quality of life on that road.
    She asked me to have Mom call back in an hour when she'd be able to get a direct cousin and her husband, who also live in Mechanicsville, over to her house and on the phone.
    I didn't pick up the other line during that call and I'm glad I didn't. As soon as Mom heard her cousin-in-law's voice some extraordinary changes took place. Her voice took on the rich, ironic, jaunty tone that I've always associated with her conversations with her related peers. Her posture straightened. Her eyes lit. Questions and answers and laughter were shot rapid-fire over the lines toward her links with what I imagine to be her most treasured part of herself. It was a delight to listen to and watch.
    Some of her responses to these relatives:

• "Oh, 100 percent!" (I'm sure this was in response to an enquiry about how she is.)
• "Busy, busy, busy!" (I was amused to hear that Mom feels her life is busy...and, from her perspective, especially lately, it probably is.)
• "Yes, but, what do doctors know?" (I loved this one...it is typical of the members of her family, even when helped by medicine, to assume that it isn't the doctors or the pills or the procedures that are responsible for their longevity, but their own nerve and verve.)

    There were questions about people I don't know. Apparently a few more old friends have died...it sounded like it, but Mom's responses to these tidbits were typically (for her family) accepting.
    Toward the end of the conversation Mom said, several times, "I don't remember them," or, "I only knew her slightly when I was in school (meaning high school), or "That name doesn't sound familiar...oh, well, they must not have been worth remembering," followed by a wry laugh.
    When the conversation ended, Mom switched back to her living-with-Gail-far-from-old-relatives mode, and my heart fell a bit.

    I'm wondering, now, if, somehow, someday, soon, she and I can manage a trip to Mechanicsville to see these people. It doesn't sound like they are up for traveling anymore, even though the blood cousin and her husband still traipse back and forth between Hot Springs, SD, and Mechanicsville, IA, despite them having a couple of years on Mom. Although it was my goal, before the call, to get her health stabilized to the point of being able to handle more activity without the possibility of a health crisis, she has, over the last few years, not wanted to travel, and I've respected this. I'm thinking that regular contact with those people in her life who have known her longest and know her best might be a likely way to encourage her to look forward to the rigors of travel, again.
    At any rate, two nights ago Mom once again brought up the subject of "taking a drive out to Mechanicsville; it's only about 15 minutes away."
    This time, because I am now seriously considering the possibility, I decided to get out the map, show Mom exactly where Mechanicsville is in relation to us and talk up the possibility of taking this trip. This time Mom understood the reality of the distance and time involved and her interest flagged a bit, but I didn't allow that to continue. "Mom, when you're feeling better we can do this. I know we can. It may be some months down the road, but I think we can do this."
    "Well, you may be right..." she didn't sound convinced.
    I'd like to make it happen. I'm even wondering, if the visit goes well and she seems very comfortable among her peers, that it might not be hitting out of the park to consider a move closer to everyone. I mentioned this to her and she seemed enthusiastic. I'm not sure if this is a pie-in-the-sky idea, time will tell, but I cannot dismiss the extraordinary change in her demeanor that happened from simply talking to her long-long time loved ones.
    At the very least, I'm going to see to it that she keeps in close phone touch with these people. I can see, now, how important it is to her life and her sense of herself. One way or another, I intend to make sure that those people who are part of the fundament of who my mother is become a frequent part of my mother's life, again.
- posted by gail rae @ 10:24  0 comments   email...this post

 
Yet another 10 mg of furosemide...
...even though Mom moved about more than usual yesterday. It was a hair day, a blood draw day and an eating-lunch-out day. She was shuffling a bit more than usual but this may be because of something I discovered a few days ago: It seems that on Monday of this last week, while I walked over to the man's house who trimmed our orange trees and returned a saw he left that I hadn't earlier discovered, Mom decided to get the mail. Barefoot. She headed out at, thankfully, at the same time that MTNDN was coming out to pick up her own mail and a woman who lives in the park was driving by. Good thing because MTNDN reports that Mom's knees buckled and she collapsed. She was assisted quickly, herself and our mail was retrieved, and by the time I got back she was sitting at the dining room table gleefully ripping open the mail. That evening my mother went to bed early, refusing a leg rub (she seemed so tired that I gave in). It was not until the next morning that MTNDN told me about the fall. I guess she thought I knew about it. Sure enough, when Mom awoke and I insisted on performing a leg rub did I notice the blisters over the pads of the balls of her feet.
    Mom didn't have any memory of the incident. Other than the bruises, she seemed fine but she's been a bit slower since then, both, I think, because of the increased sensitivity of her feet (which she denies) and the tiny bruise on the outside of her left foot which was probably the foot she fell on. I scolded her, gently, for going outside in the summer without shoes on, or anytime, for that matter, but, other than that I let the incident go. I'm considering it a lesson to myself, though. I need to keep a somewhat keener eye on her. It has seemed to both Mom and me that I've been overly watchful but, apparently, on that day I could have been even more so.
    I'm not castigating myself for this. There are bound to be times, especially since my mother's sense of independence is still very high, that incidents like this are going to happen. My goal is to simply take my cues from their type and frequency and continue on from there. I know that I am providing more scrutiny than she would have had in any other caregiving situation; and yet, a mail-box visit here, a trip to the bathroom there is going to slip through the cracks in my vigilance. My goal is to keep those slips to a minimum.
- posted by gail rae @ 09:39  0 comments   email...this post

 
It's a dream that's puzzling me...
...a dream from which I awoke into the day. It was a two part dream; as though I'd had two dreams in one, except that there was no break in the REM cycle I was in. The first I have completely forgotten except that it was immensely satisfying. The second was, well, intriguing, although my memories of it are fading fast, as well.
    My mother was in the dream, we were as we are now, same age, same relationship, me as caretaker, etc., my mother was even wearing her favorite outfit, which, oddly, she donned today. Although I remember little else, what I do remember is that we lost track of several things throughout the dream. That is to say, I lost track of them, my mother did not so much lose track of these things as simply delete their existence and any memory of it. I remember her being surprised that, as I was discovering items missing, she was wondering, out loud, of course, where I got the idea that we'd ever had these items.
    I lost both our cars from our garage. I lost her purse. I lost my purse. I made a purchase (of what, I can't remember) at a corner Circle-K type store for her as she waited outside and, on my way to her, I lost what I'd purchased. When we arrived home from where ever we were we were visited by two people, a man and a woman I do not know in real life, and I managed to lose them, too.
    I was not frantic so much as bewildered. I remember asking throughout the dream, rhetorically, although directing my question to my mother, "Where is everything going?" I remember my mother responding, but I do not remember her response.
    I was neither relieved nor distraught about the loses, but, as the dream progressed, I was more surprised when things didn't disappear than when they did. I awoke before the dream was resolved, not from the dream itself but from one of our cats gently scraping my arm, anxious to be allowed out on the patio before the day heated.
    All day, as the memory of the dream, and even my memory of the memories, fades I've been focusing on one thing: priming myself to dream a similar dream, tonight, whether I remember it or not, so that I can not so much finish the dream as finish the work I seemed to have been doing in regard to my life with my mother as I dreamt it. I think it has something to do with whittling away so many assumptions I've had over the last half century about life and living; assumptions which we believe are assumptions we should have, all of them assumptions that we must overcome rather than allowing ourselves to be overcome. My mother is clearly being overcome by life, now. I've been transfixed by this process lately and, I think, by accompanying her through this, I'm learning something about my own preference for lack of interior control which I've guiltily carted throughout my life, wishing not so much that I could master it but that I'd not been born with it.
    Now, in the quiet revelation of my mother's life being so clearly overwhelmed both internally and externally by Life, I almost feel as though I'm being allowed to see that I need no longer feel guilty about my own proclivities.
    I'm not sure of this, though. So I want to dream this dream, or at least a dream that provides an illustration of the same realization, again. Tonight.
    Now that I've focused on this I am on my way to do it.
    Forgive the strange posting. It is a note to myself, a long note to myself. I'll write notes to others later.
- posted by gail rae @ 00:44  0 comments   email...this post

 
I am having some trouble putting into words what I am really thinking...
...tonight about my mother, and my mother and me. So, I am posting this simply to dip my feet in...and I am going to start again, here, in a minute, refocused.
- posted by gail rae @ 23:52  0 comments   email...this post

 
Yesterday got away from me...
...happily. It is always a good day when Mom revives a little and is up enough for me to enjoy her eyes-open company.
    Yesterday included an appointment with her PCP, the last review before the colonoscopy. He was surprised and pleased that I managed to have the colonoscopy scheduled so quickly. Apparently this is rare. I'm not sure what I did, besides mentioning to the scheduler that it was urgent.
    At the beginning of the appointment the doctor asked her how she felt, and, as usual, despite her looking pale and moving slowly, she answered, "Fine," while, just out of my mother's line of sight, I shook my head vigorously, indicating that she isn't "fine". Next, he asked how her energy level was (an unusual but welcome question). To both my and his surprise, she answered, with an ironic twist to her delivery, "I have no energy!"
    The doctor and I both sat up. I laughed and said, "Well, Mom, I'm glad you're telling the truth on that one!"
    The doctor laughed, too. I've been assuring her that, once the lot of us focused on her health manage to bring her anemia under control she'll feel better. To my relief, the doctor told her exactly the same thing.
    As I mention in the Colonoscopy Instructions, I will be withholding her lisinopril the day before and the day of the procedure. Without prompting, the doctor mentioned yesterday that I should do this in order to insure that her blood pressure not drop too low. This was a relief, as well, to know that I am, for the most part, making proper decisions about her medical care on a case-by-case basis.
    I told him that I am posting her test results online for the benefit of my sisters and asked him if it would be possible for me to obtain all test results in her history so I can post them. He was not only agreeable to this but surprisingly enthusiastic. Once the results come in from the colonoscopy he said he will have his staff pull all test results, blood, imagining, urinalyses, etc., and copy them for me. So, it may be a few weeks before I can complete her history with this physician but there will be no problems obtaining it.
    Last January Mom's hematologist scheduled her for a follow-up appointment July 22nd with a blood draw the week prior. Since that date turns out to be the day before the colonoscopy and he was also one who felt Mom's anemia treatment would benefit from this procedure, I called to see if he might want to move that appointment to after the test. He not only wants to do this, unless the results are "unproductive" he wants to wait to see her until her PCP has had a chance to address the results and work with them toward successful anemia treatment. Her appointment has been rescheduled for August 12th, blood draw to take place the week previous.
    I don't know what this is going to do to our transferring to Prescott. A lot will depend on how quickly and successfully this path of discovery and subsequent treatment proceed. I'd like to think that, either way, we'll get up there before August 12th then come down for that check-up but I'm not holding my breath. One way or another I need to take mail forwarding off the Prescott address for at least a month, just to keep mail delivery up and make sure that this listing of that residence as her primary residence for tax purposes isn't undermined. I hope this means we'll actually be up there for at least a month (I'm hoping, actually, two or three months), but it may turn out that I'll simply be making a trip to Prescott every 3 or four days during September to pick up mail being delivered to our home. I hope this isn't what happens, but, we'll see.
    I have a few more things to report but I want to pay some direct attention to Mom, who, as usual, was up late last night, arose late, and is having a little trouble making it through breakfast because her bowels are particularly active this morning (good sign). It looks as though it's going to be a low key day, so I'm sure I'll be posting again later.
- posted by gail rae @ 12:13  0 comments   email...this post

 
Another 10 mg of furosemide tonight.
    I mention it because it seems as though it was only a few days ago when I gave her one, last, and, at that time, I decided to begin vigorous foot rubbing twice a day because it seemed, then, as though it hadn't been too long since I'd given her furosemide. I wonder if Congestive Heart Failure is settling in.
    She had a good day today, although it started elephant slow. I think she was dramatizing a bit, trying to get me to cancel her hair appointment, but, before she mentioned it, I told her, no such luck, she didn't have her hair done Friday, come hell or high water she was getting it done, today, "...even if I have to steal your body from the undertaker to do it."
    She appreciated the humor but still moved as though she was toting a load, and, now, I'm thinking, she might have been; around her heart and around her lungs. A load of fluid. It was not apparent this morning, but tonight it was as I automatically scanned her belly for signs of fluid retention, and found them, while she was undressing for bed. I decided to give her only a quarter pill, as I think this will work on her gently enough to keep her bed dry and her sleep relatively undisturbed. Lately she's been rousing on her own and going to the bathroom to relieve herself instead of remaining in bed unaware that her bladder is calling. It's a subtle sign of a higher level of alertness than I've noticed over the last several months and I am pleased to be able to report it.
    When we arrived home from her hair appointment she was lively enough that I asked her if she'd like to go to the grocery with me, we only needed a few fresh items. No, she wasn't interested, and, sure enough, when I arrived home less than an hour later she was napping, but she awoke soon after my return and remained awake when I decided to take a nap. When I awoke, she was at the kitchen table perusing a variety of magazines, books, papers and mail. This is a familiar pose for her. It has been burned and developed onto the plates of my brain over and over and over in the last 9 years of being with her. Lately, it's been hidden by an image of a bathrobe clad woman with falling hair and bleary eyes holding herself up at the table with her elbows, staring, for awhile, into a blur I cannot imagine. Seeing her, this afternoon, smart in black slacks and a deep peach shirt (one of her and my favorite outfits of hers), her hair in a stiff, high French Twist, upright at the table, her fingers alert to the pages, her eyes scanning back and forth, was a delight. This evening I found a few history shows on PBS we both enjoyed and baked her a raspberry/blueberry cobbler with what was left of the plump, appetizingly fragrant, peak-sweet berries I found this weekend that we've been unable to resist and have been eating as though they were grapes.
    I have some catching up to do on some previous items of interest (to me, if to no one else), so I think I'll cut this particular post short (for me, anyway), and start down my journaling to-do list.
- posted by gail rae @ 23:45  0 comments   email...this post

 
I awoke this morning from a curious dream.
    I was seated just outside the relaxed sphincter of an enormous colon, one into which I could not only see but insert the entire upper half of my body. The colon was clear except for thick sheets of goo-like shit clinging to and dripping from the walls of the colon. Using a snow shovel-like device, I was scraping down the walls of the colon to remove the sheets of shit. It seemed as though the more I scraped, the more gooey shit I discovered. At one point I considered entering the colon entirely so I could stroll the length of it and do my job better, although, as I awoke I was still cleaning the entry.
    Curiously, it hasn't seemed to me that I've been particularly concerned about how clean my mother's colon will be for next Wednesday's procedure but rather whether she will become so dehydrated that the action of the laxatives will cause a blood pressure crash. Now, though, since the dream, I'm fascinated by my imagining of the cleaning process. A curiosity: in the dream, there was no 'mention' of the smell of what I was doing. I find this interesting because I've noticed, lately, that I'm not only becoming 'immune' to the smell of my mother's fecal activities, whether planned or serendipitous, but I'm beginning to associate certain fecal aromas with her various physical ups and downs, so that, sometimes, simply a whiff as I walk by her bathroom tells me, for instance, whether she is going to be active or lethargic for the next 12 hours.
- posted by gail rae @ 21:34  0 comments   email...this post

 
The Colonoscopy Decision
    It may be a surprise to those of you who are familiar with the events of last fall and winter that I have decided to okay a colonoscopy for Mom and she is willing to trust my decision. This has not been an easy decision for me to make. As a review, last fall because of the following factors:

1. negative occult blood fecal smears,
2. urine negative for blood,
3. no upper or lower tract gastro-intestinal digestive disorders,
4. the difficulty involved in keeping my mother in a fully hydrated state at any time and the fact that she had experienced a blood pressure crash due to dehydration in early September, 2002, one month prior to the time for which the colonoscopy was being suggested,
5. the dismissal of my concerns that the day before the colonoscopy would be a bit too rigorous for my mother, at that time, and might precipitate another blood pressure crash,
6. my inability to sort through the lack of information I was getting from the doctors and the bewildering abundance and technicality of the information I was finding on the internet about anemia in the elderly,
7. my mother's innate disdain for and mistrust of invasive medical procedures, and, thus, my efforts to keep procedures of this sort to a minimum in her life and to always, first, seek alternatives, and her insistence that she wanted this particular test cancelled,
8. the quick and spectacular success of iron supplements in curing her anemia and the extent to which all her spiked or sluggish test numbers cleared up as her anemia turned around,

I decided, after having scheduled a colonoscopy for mid December, to cancel it. I discussed this decision with both her PCP and the consulting hematologist. Both agreed that, considering everything, while a colonoscopy done at this time could be valuable as "history" (a word I have begun to look upon suspiciously when used by anyone in the medical field) it would not be unwise to cancel the procedure and wait until a more physically auspicious (or emergent) time.
    Well, Time is now Emergent. Her anemia is no longer being addressed by large doses of supplemental iron. It is so out of control that it is affecting her other body functions. And, most importantly, I now understand why it is that, as her doctors have concluded, her anemia is most likely due to internal bleeding.
    It is important that I note here that I did not understand why her doctors insisted, earlier, that she was bleeding inside when there were a variety of factors that indicated that this may not be true. Her lab results were not, from what I was able to understand, always classically in favor of internal bleeding as the cause of what we now know to be her Iron Deficiency Anemia. And, as well, after my first dive into the world of medical literature, I discovered that in a third of all cases of anemia in the elderly, both Anemia Due to Chronic Disease and Iron Deficiency Anemia, the cause is never found but this is rarely a deterrent to successful treatment of the anemia.
    My second dive into the literature has taken place within the last few months as I've been trying to form a deeper understanding of the flow of numbers coming from Mom's blood tests and why the doctors are so sure that these indicate internal bleeding, that it should be looked for (that Mom is not too frail for this) and the best place to begin to look for it is in her colon.
    First, I want to refer any of you reading to an article that, despite it being almost 3 years old, sums up almost everything I've been able to discover about anemia in the elderly, and is readable: Anemia in the Elderly by Douglas L. Smith, M.D. To summarize what I discovered without you having to plow through 11 pages, the tip-off to the doctors that Mom's anemia is due to internal bleeding is that it has been successfully addressed by iron supplements. Anemia Due to Chronic Disease or other conditions such as vitamin B12 or folate deficiency is never successfully addressed with iron supplements. In fact, in most cases, it isn't addressed at all. Thus, when the iron either stopped working or, as it is beginning to look now, works only intermittently, this most likely indicates that sometimes she's bleeding more, and sometimes she's bleeding less or not at all. At any rate, the likelihood of her bleeding enough to jaundice her and completely sap her of energy is high on any particular day now, and this needs to be investigated. If the cause of the bleeding can be found and stopped, it needs to be.
    The colon is the most likely place to look first for a number of deductive reasons which form themselves into a hard-to-ignore numbers game:

1. Bleeding in the elderly is usually discovered in the digestive tract;
2. if the person does not have a history of upper intestinal disorders (ulcers, acid reflux disease, etc.) the most likely place in the digestive tract for a bleed to occur is the colon;
3. The preparation for both an endoscopy and a colonoscopy are the same. The anesthesia for the procedures, though, is typically less rigorous with the colonoscopy in people my mother's age, especially those who smoke;
4. All other non-invasive tests have been done, including abdominal scans with radioactive dyes, and are showing her "normal", nothing out of order, but, she continues to struggle with anemia.

    The change in my decision is completely dependent on the fact that her anemia simply can't be addressed with iron supplements anymore and is weakening her sufficiently to set up a Garden of Eden for other conditions, such as worsening her COPD and contributing to not only incipient but developing Congestive Heart Failure, from which she was not suffering, previously.
    I know, I know, eventually, something will take her out. I know that, although I wish her a quick, easy death, she is just as likely to decline slowly while doctors and labs and I watch and worry about her blood numbers, trying to improve them, even as her body slyly winks and whispers, "Hey, do what you want, but this woman's reward is due and your efforts to postpone the presentation aren't going to have any effect on the timing of the ceremony."
    The more time I spend with my mother and her health (which are sometimes two separate entities, now), the more I think I'll know when it will be time to stop trying to improve the quantity of my mother's life and simply make her comfortable. When I first began my adventure with her I didn't think I'd ever come to the point I'm at now, but I made it. I trust my judgment on this, and, what's more, Mom trusts my judgment, especially since I continue to ask her, outright, when she is having a series of very low days, if she thinks it's time for me to protect her, rather than treat her, and allow her to sleep herself into death. I can tell you who are reading, though, that now is not that time. Mom still has both feet here, even on her really bad days when she swears she doesn't care what I do, she just wants to go to bed, even though she's been in bed for the past 12 hours. I can't tell you how I am sure that this is true, but I am.
    So, on July 23rd at Banner Baywood Hospital at 0820, check in at 0700, she's getting her ass scoped, as I like to refer to it in her presence. Although she's never been one to favor strong words, she likes the way I describe the procedure when I discuss it with her. I think, hearing the procedure described this way allows her to feel as though the inconvenience and barbarity of it is not being covered up by a bunch of "c's" and "o's" ("c"-"o"-mfort sounds), thus, she is not at its mercy.
    Surprised at the term "barbarity"? Those of you who know my mother know she is a Star Trek fan. One of the Trek movies she's seen more than a few times and is one of her favorites is the movie in which the crew returns to 20th century Earth to capture a whale and transport it through time. One of the scenes takes place in a hospital in which Dr. McCoy, as he dashes through the halls, takes a quick look at what is our modern medicine, calls it "barbaric" and quickly, painlessly and non-invasively heals a few patients awaiting surgery as he heads toward his destination. Mom has never forgotten his pronouncement. Whenever we watch the movie she always turns to me and says, indignantly, "He's right, you know." And, I think, she continues to feel this way, even when the barbarity of current medical practice is also state of the art. As far as she's concerned, life's accoutrements have changed so much since she was born that there is no reason why we should still be cutting people up, sticking expensive instruments into them and endangering them further than their dis-ease already endangers them. And, she's right. She's just ahead of her time.
    I do, at least once a day, have visions of something going horribly wrong as a result of the procedure. I'm feeling somewhat better about this, though, since having talked to her gastro-enterologist's scheduler. I'm not taken with the physician who is doing the procedure from a personal standpoint. She is sadly lacking in people skills and was really off-putting the first time I met her, dismissing both my questions and concerns by citing how many colonoscopies she does a year. All that told me was that colonoscopies are her meal ticket. She comes very highly recommended, though, has an excellent track record and her scheduler clued me that she is especially careful with the elderly, thus, the procedure will most likely be longer than the typical time quoted in the literature. That's what I needed to know. She doesn't have to be good with people, she just needs to be good with assholes. And, she is.
- posted by gail rae @ 00:58  0 comments   email...this post

 
Looks like I'll be playing catch-up, tomorrow...
...here. I hit a roll, today, with Mom's test results, and kept going until I got everything I have posted, just before dinner. It was a quiet day, I was completely boring, no one came, no one went, miracle of miracles only one person called. And now, I've got some clean-up to do on my computer and some miscellaneous chores before I go to bed.
    Today was an easy day on Mom. I think she prefers it when I'm boring, locked up in a book or typing behind the computer. I don't bug her to stay up, move around, I'm not suggesting why don't we go here, why don't we go there...she loves it.
    I will, soon, very soon, be posting my apologia for the colonoscopy. Until then, trust that I think, this time, it's necessary. I've watched Mom's life become smaller and smaller over the last year, and now I know, for sure, it's due to her anemia, which simply isn't being addressed as well as all of us working on Mom's health thought it would be.
    The intense concentration on blood work words and numbers has piqued my curiosity. I'm thinking I'll be scrounging for a layman's book on blood chemistry soon, just so I can develop a nodding familiarity with what will be gracing my sights more and more often, now.
    Mmmmmmi'm tired. Time to wrap up the day and take it to bed.
- posted by gail rae @ 23:27  0 comments   email...this post