"It's time we considered adding another board game to our repertoire,"
I suggested tonight, when we both tired of Yahtzee and Scrabble.
     "What makes you say that?"
    "Oh, I don't know, it just seems like we could use some variety."
    "I think you're right. Let's take a look at what they have when we go shopping, tomorrow."
    Whoa! I couldn't believe it! She remembered we're going shopping tomorrow. This tells me she's looking forward to it.
    Earlier today after she had lunch we needed to pick up a few things for dinner. Although she wasn't happy about it, I insisted that she go with me. First she had stuck her head in the refrigerator immediately after eating. "Are you hungry or bored?" I asked.
    "Bored," she said, and closed the refrigerator door.
    "Okay," I said, "come to the store with me, push the cart around and do some people watching."
    She agreed while I was in the middle of folding clothes. I told her I'd be ready "in about fifteen minutes."
    Within five minutes she was taking off her glasses and heading toward the couch for a nap.
    "I'll be done here in ten minutes. Are you tired or bored?" I asked.
    "A little of both," she replied.
    "Okay, if you want to lie down I'm going to get you up in ten minutes to go to the store with me."
    She looked at me as if to accuse, "Slavedriver," but she sat in her rocking chair instead of laying on the couch while waiting for me to finish folding the laundry.
    When we returned from the store she didn't make any attempt to take a nap. Several hours later as I was preparing dinner I mentioned to her that I was noticing that if she gets moving a little right after a meal she is less likely to take a nap.
    She was surprised at the observation but agreed. "Moving around takes care of that," she agreed.
    "What we should do, then," I ventured, "is plan some kind of activity that requires movement immediately after breakfast and lunch and maybe even dinner," I suggested.
    She didn't immediately respond. It occurred to me that she hadn't heard me but I gave her a few more minutes.
    "We could give that a try," she said tentatively.
    I laughed. "Don't worry, Mom," I said, "I still don't have marathon training on the schedule."
    She laughed. "Let's not plan that for a couple more months."
    I'm noticing that in daylight she is quite ruddy now. I think it might be time to cut out the one iron tablet she's taking and see how she does without it. I might add it back to her diet when we first get up to Prescott just to boost her blood a little since she'll be adjusting the the thinner air and will most definitely need to be on oxygen, at least at night, and may even chose to use it intermittently at first when we're out and about during the day. The more I can get her to move though, the faster I think she'll adjust. She's still not looking forward to getting back to Prescott but she's not giving me that "here's mud in your eye" look anymore, either, when I mention it. That's a good sign.
    She's ready for bed. Time to rub her feet and legs.
- posted by gail rae @ 22:52  0 comments   email...this post

 
Mom and I have been playing board games, lately...
...and it's been an interesting enterprise. Today is our third day (not in a row) of playing. Although Yahtzee is primarily a game of chance her problem with it has been remembering enough about scoring combinations to make smart decisions on what to keep and what to roll again and remembering to check on what she has versus what she needs. Today it went much more smoothly than our previous two sessions. She always starts out as though she has never played but each time we've played she's been in need of less and less coaching. Today, during our second round, I started to coach her on how to use a roll and she playfully snapped at me, "Don't help me, how do I know you're not trying to make me lose?!?"
    Scrabble has been the real surprise, though. With each of the three games we've played her score has improved by more than a few tens of points. She hasn't beat me yet, which she used to do regularly, but she's getting close. For all three games I've allowed her to use the dictionary before putting down a word. I figured this would help her remember her love of singular words. Today, about three quarters of the way through our game, she asked, "Aren't you supposed to use the dictionary after a play, when you're challenging someone?"
    "Yes," I admitted. "I just thought you could use the help, while you were getting back in the saddle."
    "Next time, let's do it the right way. That means you can't use the dictionary to find words, either."
    Whenever I give her a break I take the same break, and she's beginning to get wise to this.
    I swear, I pay the same amount of attention to her game scores as I do to her blood sugar numbers. As her scores rise I celebrate, both internally and externally, her reviving awareness.
    She just interrupted me here at the computer. "Do you want to go on with what you're doing there or let me beat you at Yahtzee?" she asked.
    I laughed. "I'd rather let you think you're going to beat me at Yahtzee."
    She laughed.
    So, we're headed back to the boards. More later.
- posted by gail rae @ 19:48  0 comments   email...this post

 
I've begun a table of Mom's daily blood sugar readings.
    You can find it on the page entitled How Sweet It Is. Details pertaining to taking and posting these readings are on that page.
- posted by gail rae @ 09:00  0 comments   email...this post

 
Caregivers Taking Care of Themselves
    I've finally managed to get back to this subject. My entire definitive rant can be accessed at my fledgling essay section under the title "Take Care...". The title is a direct link.
- posted by gail rae @ 08:53  0 comments   email...this post

 
My mother's sense of her personal control over her life...
...was on my mind when I awoke this morning. I walked on it, still haven't come to any conclusions, so I'm writing about it.
    When one is a caregiver one's sensitivity to another's sense of personal control over her/his life is one of the trickier areas to negotiate. I realized last night, after writing my last post, that over the last two years I have not been handling this area of my mother's life as well as it could be handled, all the time thinking that I was doing well.
    It was two to three years ago when my mother began saying, "No" regularly to lifestyle changes in order to enhance her health, taking emotional responsibility for decisions she had made such as buying the house in Prescott, accompanying me on errands, visiting relatives and friends, attending business meetings, phone calls and negotiations, paying her bills, bathing on a regular basis, even getting out of bed in the morning. Being her companion and taking into account her age, as each of these hurdles appeared I took responsibility for clearing those that required action and allowed her the choice of no action when the hurdle was something that required only her action, such as appearing physically in the world beyond our homes. My reasoning has been that there are areas enough in her life where her control necessarily needs to be augmented by my involvement (in many cases, heavy involvement, such as her decision, in 1997, to buy a 'summer home' in Prescott) in order to protect her and make sure her decisions unfold felicitously as much as possible. Thus, I felt that she had a right, and I had a duty, to allow her to make what decisions and take what action (or non-action) that still lay within her grasp.
    As I look back I realize that allowing her to say 'no', in many cases, undermined her physical, mental and emotional health to the point that we have spent the last year negotiating crises in all these areas. As I let her refuse changes to a healthier, less sugar laden diet, as I allowed her to give in to her lethargy, as I chalked her decreasing involvement in the wider world up to her natural, life long tendency to keep her circle of family close around her in lieu of neighbors and friends, as I accepted her decisions not to accompany me on personal business appointments involving her affairs, I think I also undermined her ability to be present in her life.
    Both of us, especially me, have been very lucky. Within the past few months it appears as though much of what I allowed to occur in the name of preserving her personal sense of control over her life is reversible. Aside from learning an astonishing and valuable lesson about the resilience of Ancient Ones, I am grateful that I got a wake-up call late last summer that I could not ignore in the form of her health crisis.
    Now I am finding that I am having to internally scramble to redefine how to make sure that, as her sense of her life revitalizes along with her body, I do not, once again, take steps that insidiously undermine her sense of personal control over her life. I'm still not sure how to do this. For the last two and a half years gentle reasoning has not worked with her so I've begun to narrow her choices. I no longer ask her if she wants a salad at dinner, I prepare one for her and inform her that she must eat it (and she does). When we are in the store and her sugar detector locks onto a sweet treat I no longer explain the consequences of her choosing to buy and eat this treat, I say, firmly, as I did yesterday, twice, at Costco, "No. We're not playing the sugar game, anymore. We played that for two years and we almost lost." When she begins to try to turn her day into one long snack, even though the snacks we now stock are all healthful, I no longer struggle to try to figure out how to administer her diabetic medication under adverse circumstances and still have it do some good. I monitor her snacking to accommodate the requirements of her medication. When she decides to spend the entire day in bed I no longer allow this, even if I have to use physical influence (such as gently moving her body into a sitting position on the edge of the bed or catching her as she's heading for the bedroom and turning her around). When she complains that she is bored and thus has a right to give in to that boredom in bed, I tell her that she can be bored just as easily in her rocking chair as she can in bed and it's healthier for her to sit up. When she awakens in the morning not wanting to move around I remind her, firmly, that every time I've forced her to get up, bathe, eat, get dressed and accompany me on errands she has felt better and been grateful to me for having done so.
    Yet I still feel as though I haven't discovered the secret to allowing my mother the dignity of feeling personal control, even as her ability to control her life diminishes. I have an advantage, of course; I am her daughter, we know each other intimately, truly enjoy each other's company and characteristics, thus I have a well stocked collection of personal resources I can peruse to find the best, most potentially cooperative (rather than dictatorial) avenue toward this goal. I am nowhere near mastery of this task, though, and sometimes I wonder what mistakes I am making of which I am unaware and that have the potential to usher in another crisis. I'm trusted more than someone outside her immediate family. This, though, doesn't always work for us, as I am also the one in her immediate family, being her live-in companion, whose opinion and suggestions she is least likely to consider, being so familiar with them.
    We, her daughters, spring from relentlessly independent stock. It is more than preference that each of us clings to our insistence on keeping our own counsel, making our own decisions and resolutely living with the consequences without apology or regret. It is a matter of early training and, I think, genetic design. And now I am having to confront the source of these life strategies head on in my mother and negotiate around them in order to enhance the quality of her life and, in some cases, continue her life from day to day. On the one hand, the task is daunting. On the other, I believe that it is precisely my mother's strong sense of independence, individuality and self-possession that keeps her from, for instance, giving in to what could have been a fatal blood pressure crash almost a year ago.
    If you think caregiving is a matter of following a set of rules set by professionals without factoring in the uniqueness of the person for whom you are caring, you need to think again.
    The dilemma continues, amazingly, so does the exhilaration and, appreciatively, her life and mine continue...
- posted by gail rae @ 06:12  0 comments   email...this post

 
Yesterday morning...oh dear...
...yesterday morning was not one of my shining mornings, but then neither was it one of my mother's. I'd been running on an extraordinary energy surge that had lasted for several days and allowed me to accomplish amazing feats with little sleep. I'd gotten so used to the surge that I had been planning my days around only a few hours of sleep a night. Tuesday morning was my Waterloo. Although I didn't have to haul myself out of bed, my body hadn't achieved that level of stubbornness, I felt as though I was down three quarters of a tank. My primary physical behavior yesterday morning was yawning, over and over and over.
    I managed a few good ones before I stumbled out to our main living area. Although it was somewhere between 0930 and 1000, Mom was up, sitting at the table looking as bright as her new yellow bathrobe. She'd been up for about 15 minutes, she said.
    I was pleasantly surprised but my fatigue betrayed me and I continued yawning. Each time I started a good yawn my mother said (one of her teases she's been doing for years), "Close your mouth."
   I've always found this mildly irritating but have tolerated it without thought just to humor her, closing my mouth over the yawn, which frustrates a yawn just as efficiently as having someone say, "Close your mouth," and produces a facial distortion that she finds humorous.
    Yesterday morning I was not in the mood. I needed several good, deep yawns just to get going and she was interrupting each one. Without warning, 52 years (well, a few months shy of 52 years) of frustration poured out of me. I lit into her. I told her I was severely sleep deprived and I needed to yawn. I told her that the more she did this, the angrier I was becoming. I asked her to stop in no uncertain terms. Then, falling into my usual anger mode, I quickly whipped up the icing and began spreading it on the cake. The following is paraphrased from memory.
    "You know, Mom," I began, "you've always done this, ever since I can remember, and it's always been both irritating and frustrating. Yawning is not only triggered autonomically, it's necessary and it's pleasurable. You need to stop interrupting people's pleasure. This isn't the only thing you do to keep people you love from feeling pleasure. Your habit, for instance, of offering a back rub and then, when you're done, slapping the person right where you've been rubbing them is just as frustrating. You know, I give you very pleasurable foot and leg and foot rubs every morning and every night. I do all kinds of things that give you physical pleasure and I purposely go out of my way not to disrupt the stimulation and relaxation these give you. You need to stop doing this to me and, for that matter, to others. You are a sensitive woman with much personal dignity and awareness. These ploys are beneath you. It's time they stopped."
    Whew! Did you get that?!? It's rather like the time I severely corrected my mother for interrupting people when they're talking and announcing, "Oh, she/he doesn't know what she/he is saying." It's in the history. Now that I'm reading my paraphrase above of what I said to her this time, it feels so fresh that I'm sure it probably is much closer to what I said than I imagine.
    The funny thing is, when I raked her over the coals for belittling what people say she never did it again. Although we haven't had occasion to test yesterday's correction, I suspect it will work as well.
    I don't know if I was unnecessarily severe. I do know that within minutes I felt horrible and began apologizing for my method, although, I continued to point out, the subject was important. I also launched into a litany of apologies for some behaviors that have been habits of mine and not only irritate my mother but sometimes confuse her and certainly make her feel as though she has no control over her life, one of the things I've been trying to change (search out archived post from some days ago regarding the possible psycho-causes for my mother's anemia). The worst example is my habit of giving her a choice of just about anything; food, activity, timing, etc., and then canceling her choice and telling her the opposite is more practical, wiser, etc. I told her I won't do that again, and I won't.
    The matter, however, was her interruption of other people's pleasure. After the episode was over I gave some serious recollective thought to it and realized that it is my understanding that my mother has habitually and 'teasingly' interrupted other people's small physical pleasures because she may have continually had her own physical pleasures either belittled, interrupted or ignored all her life, by everyone in her life. A previous subterranean consideration of this is precisely why I instituted my personal policy of giving my mother physical pleasure and allowing her to enjoy it without interruption (although I'd never consciously thought about it). It gives me a great deal of pleasure, sometimes physical pleasure, to do this for her, in part because I know no one else has.
    The curiosity in all this is that almost every time I rub my mother's feet and legs she offers to rub mine in return. I have a standard oral essay to which I subscribe and which I repeat every time she offers. I tell her that massage is so pleasurable that it should never be 'traded' in return for a massage. It should be given freely with no thought of return by either the recipient or the masseuse. When someone gives a massage 'in trade' they usually don't pay attention to the body they are massaging, to the reactions of the recipient, they don't massage thoughtfully with involvement, they simply complete a barter.
    Not that people should never ask for physical pleasure but the pleasure for which one asks should be granted only if the one asked wants to give pleasure without trading it. I know, I'm going against all the 'good advice' of a couple of generations of sex therapists. As well, people should become more habituated to giving physical pleasure without waiting to be asked. Otherwise, the person giving the pleasure is not focused on the recipient but the result, their payment for the pleasure given, and don't devote themselves wholly to the task of sensitive pleasure giving. Thus, the person receiving the pleasure is never allowed to really relax into the experience and receive its full benefits. Again, I know I am facing down centuries of 'satisfied' johns and janes. But none of this disproves that as a society (I'm speaking of this one in which my mother and I live) we may very well be in the habit of not knowing what heights of pleasure and relaxation we can achieve because we're trading pleasure favors instead of freely giving and receiving pleasure.
    If you doubt what I'm saying, those of you who enjoy being licked by your pets (who invariably stop if you begin to pet them while they're licking you), think about how enjoyable is the reception of free pleasure, how much longer the afterglow lasts when you know you are not being expected to return it and how, often, your instinct in that relaxation is to reach out and scratch and stroke your pet, your fingers seeking out exactly those places where you know your pet most enjoys being caressed.
    The above anecdote is an excellent example of how my mother and I learn and grow with each other. Sometimes it get tense and maybe a little out of hand. But, one way or another, we manage to understand each other, make amends and increase our level of mutual enhancement, which is possible even when a day begins in a very bad manner.
- posted by gail rae @ 21:04  0 comments   email...this post

 
Regarding Mom's test results postings:
    I decided not to seek out any test results from the PCP she visited before we switched her to her current clinic because I realized that any test results would tell more about her former PCP and his doctoring habits that they would about her.
    I have a good recollection of her relationship with her previous PCP and an excellent recollection of my relationship with him that began when I realized it was becoming necessary for me to become involved in this aspect of her life and be present to record and remember what he told her and what medications and actions he prescribed. I don't think he was a "bad" doctor but he was clearly overbooked, overworked, and intimidated by the relatives of patients who acted on the necessity of becoming involved in their loved ones' medical care. I also remember that he took and required few tests. Some of this may have been because up to the late 1990's her health was in excellent order. Beyond that point though, especially when he began prescribing metformin for her, he did not monitor her adequately, did not inform her that self-monitoring was necessary, gave her some printed information about diabetes but dismissed it as he was giving it to her and the only statement my mother remembered of his management of this particular dis-ease, from the day he put her on the metformin, was that he said, "...you can eat all the popcorn and peanut butter you want." Because he did not monitor her from the beginning she stopped taking the medication soon after she'd started. It made her "feel bad"; which is to say lethargic and foggy, and despite the fact that I'm sure her blood sugar was on its way to thoroughly saturating her blood at that time, she felt much better off the medication for awhile.
    I will be continuing my collection of test results from now on and poring over them as has become my habit, learning as much as I can about how to interpret them for clues about handling her day-to-day health.
    Oh! I almost forgot. The very last test I input this morning for which blood was drawn on 7/27/00, much to my surprise, seems to indicate in the context of all her other tests that she was beginning to develop waves of suspiciously anemic conditions back then but which were not addressed at that time. As I look over the tests I can see why. Sometimes her blood was in perfect order, sometimes it wasn't, but there was no consistency to these indices except for their inconsistency. I'm pleased that they became consistent enough within the last year for this to finally be addressed although I also, now, see why it is so hard to determine the cause for her anemia and why, although it appears to be somewhat likely that she intermittently bleeds internally, this also may not be the case. It's important, I think, for me to keep in mind that she was at her most severely anemic during the period when the colonoscopy was performed on her and yet, without discovering any indication of internal bleeding, her anemia cleared up more quickly than is usually the case after the procedure. Despite my insistent questioning of all that her doctors have been doing for her, I am now grateful that they have been paying close attention to her for the last year, am more sympathetic with their dilemma in regards to her anemia and am going to write her PCP a letter today expressing both my further understanding of this issue and my thanks for his care and his endurance of my involvement in her care. I am thinking, too, that both he and I (and, perhaps, the entire institution of medicine) had and have a lot to learn about managing intermittent, resistant anemia in the elderly and I want to express to him that the more information he can give me and the more he can help me consider all the personal-to-my-mother and general information about this problem, the more likely I am to go along with his recommendations, even though I may initially question them.
    It is fascinating to me to consider her health in light of the series of tests from this PCP but it is also interesting to consider the dynamic state of medical laboratory technology, which is clearly indicated as I peruse the history. Not only do reference ranges change depending on the vendor of the test and demographics regarding test results as they are recorded and processed throughout the nation (and, I'm wondering, possibly the world), but groups of testings one can order and the ability to get usable results regardless of the state of the testee's health and ability to maximize themselves for usable results continues to upgrade. I read yesterday, in a book I have just begun (published in 1999), that computers are beginning to edge out doctors in the ability to sensitively diagnose individuals. I'm not surprised. I know this is going to usher in (already has, in fact) a difficult period in medical treatment for both doctors and patients, in large part because past expectations and what was once legitimate ego gratification for both doctors and patients due to the "doctor as God" syndrome will have to change. But I find the possibilities exciting and am pleased that my mother continues to live to take advantage of these pregnant possibilities.
    I should mention that there were two urinalyses which I did not post. Both were done to diagnose and treat a severe bladder infection (which turned out to be caused by Strains 1 & 2 of Escherichia coli) that precipitated a change in PCPs. The tests merely confirmed the diagnoses and that she was on appropriate treatment.
    Lastly on this subject, as I recorded tests I also became aware of mistakes I made when posting previous tests, mostly in names; i.e., I was, for awhile, recording "Alkaline Phosphatase" as "Alkaline Phosphate". I noticed as well that I have been occasionally misspelling "Albumin", which I have yet to correct. As I come across these I will correct them. If any of my readers discover or question the veracity or correctness of any particular postings, please feel free to let me know. As well, it is interesting to me to note how the labs become clearer in recording the names of tests as time goes on and the changes in names, etc., of groupings of tests. I've been noticing, too, that tests for certain values of particular chemicals or conditions in the blood become redundant as time goes on or, I suppose, unnecessary and not cost effective, so these are dropped and, as they are dropped, the names for particular groupings change. Very interesting field! Gives me lots to think about!
- posted by gail rae @ 15:05  0 comments   email...this post

 
All Mom's medical test results history...
...ordered through her PCP have been posted. I'll have some commentary soon, perhaps as soon as tomorrow, regarding whether I will attempt to attain other test results and reports taken in this time period by the gastro-enterologist who performed her colonoscopy and the test results that exist from her overnight hospital stay in the fall. For the time being though, I'm not going to worry about those, as I am quite clear on what happened and why in regards to those two events without the tests.
    I've made some interesting discoveries about tests and about my mother's medical history. I'll cover those later, as well.
    At the moment I'm going to publish, update the search index, cover myself on my futon and get some sleep before Mom awakens this morning.
    Just a note, we had an excellent day today. Mom was in a very good mood, joined in a raucous, heated discussion about men, sex and gasoline (yes, all in the same savory stew of words) at the salon with three others including me, exercised behind yet another shopping cart, decided we should adopt a baby kangaroo and a dog who will nurse kittens, and slept very little outside of her usual night sleep and her two short naps. I'm sitting here smiling as I write this. I had a good day, too.
    Good, good night.
- posted by gail rae @ 03:34  0 comments   email...this post

 
Why do I include all the personal detail here?
    I'll get to that in a minute, after I add more detail, both technical and personal.
    Today's been a busy day so I haven't added any more tests. I did manage to revise Mom's medication schedules and began cleaning up the existing test results so that when I copy those in order to plug in new dates, times and numbers I don't have to repeat all that information. The cleaning up includes adding glucose numbers, collection times (to show her various states of glucose spiking, especially in the afternoon) and noting whether or not she was fasting, since I know where to find that information on the tests now, and moving all Hemoglobin A1c results to separate tables. I still have a ways to go. Tomorrow promises to be a somewhat lighter day than today, although I never know. I didn't realize today was going to be heavy duty but I'm pleased with how it turned out.
    I was adamant about getting Mom up and moving today, although she didn't actually eat breakfast until around 1100. Once I got her going though, we went shopping for a new Scrabble game and took an extended trip to the grocery. She resisted and I became a bit pushy but, as usual, Mom was later pleased that I'd insisted. She didn't even take a nap this afternoon. Too much was going on and she was too alert.
    An interesting incident happened at the grocery. About half way through our list I noted, by smell, that Mom was having a fecal accident. I mentioned it to her discreetly. She was sure she wasn't (sometimes she has no idea this is happening). Once we got to the bathroom though, we discovered she had and it had just begun. Naturally, today of all days, I'd neglected to bring the bag I typically carry with baby wipes, a few extra pairs of paper underwear and an extra set of clothes. Since we caught it so quickly the clothes weren't necessary and I made do with the cleaning supplies in the bathroom. I needed pads though, so I left her in the bathroom in the handicapped stall (which works better for these incidents since I need to be in her stall, too) and retrieved a package of paper underwear from the store shelf, later paying for the ripped open package.
    There were two curiosities surrounding this incident: The total movement was massive and she was completely unaware not only that she'd begun before we got to the bathroom, but that she had continued while sitting on the toilet as I cleaned her. I've given some thought to both of these aspects of today's accident. Although I've noticed over the last few days that she had been going to the bathroom at home, spending a lot of time in there and coming out without having an apparent bowel movement, I'd asked her several times if she is constipated and she's been telling me she is not. Today's incident told me she has indeed been constipated. We talked about this later. I told her that when I ask her this I have a reason and I need to know if she is "having trouble" eliminating in order to short circuit events like today's, which I usually can do. I also spent some time explaining to her why this one happened. Although she has been moving more than usual, I explained, her body is signaling that she isn't moving enough anymore to accommodate her revived condition and we need to consider, now, adding a little more movement. We discussed a variety of strategies which will be implemented slowly, such as taking a short walk in the morning immediately upon arising, setting a regular rising time in the morning regardless of whether we have "plans" and limiting the time she naps. Although she was not keen on any of the suggestions she agreed that we needed to do something and we "may as well try" what I suggested. I relayed all this information as encouragingly as possible, telling her that all of this was a good sign; that her body is, essentially, saying, "Ma-ry, oh, Ma-ry, I'm ready to be more active again."
    I'm still not sure why she was completely unaware that she was having a bowel movement throughout the entire incident. This is only an occasional occurrence, now. It's been almost a month since she's had an elimination accident, mainly, I think, because her body awareness is returning. We discussed this, too, and I told her that today was part of her Early Warning System. Although she did move and get out some yesterday, she also spent a lot of time in bed, went to bed early and woke up late. "Mom," I said, "we have the choice of falling back into the mode you've been in for the last two years but I've just about decided to refuse that choice. Now that I know it is reversible I'm focused on making sure it doesn't happen again."
    She was reasonable in her response. Most of the "lecturing" I did today was a pep talk. I surmised, out loud, how I feel that, although her anemia was not caused by actions we didn't take, it worsened because I gave into her increasing and seemingly insurmountable lethargy and now that I understand this, I'm not going to let it happen again. I talked about how, since the accidental colonic preceding the colonoscopy, she has been so much more alert and revived that I can no longer accept that the last two years of her entrenched lethargy are simply due to "old age". I offered her a heart felt apology for having allowed this to happen over the last few years, promised her that I was learning my lesson and pointed out to her than in less than a month all her dangerous health conditions (anemia, CHF, diabetes) have begun to reverse themselves even as I have been cutting back on her medications. Thus, neither she nor I can any longer assume that what has been going on the last few years is normal. She 'agreed' in that sly way she has of getting someone to shut up, with which those of you who know her are familiar, and at that point I dropped the subject.
    Interestingly, although she had been a bit slow both physically and mentally this morning, immediately after her massive elimination her energy shot up, her alertness improved, and as we finished our shopping she was stepping smartly about the store, passing me as I browsed for the items on our list, anxious to hit the next aisle to see what was there. I mentioned this to her, too, and she enthusiastically agreed that she was feeling much improved.
    So we played a round of Scrabble this afternoon. I forgot to mention that when we played Yahtzee last night, I had to reteach it to her, although she absorbed it fairly well. The same thing happened with Scrabble. A couple of times when she was fixing her letter holder with what appeared to be a confused stare I gave her clues about what she could do with her letters and the ones already on the board. A few times, as well, she didn't recognize obscure words that she normally would have jumped on by dint of also being an avid crossword puzzle fan, but this appeared to be reversing itself by the end of the game. As we both found places for our very last letters she was recalling quite a bit, including her strategies for racking up points. I think the key, now, is to keep up games like this, encourage her to get back to her crosswords and get her out more.
    I am very encouraged by today. I felt as though we were siphoning into the more obscure healing powers of god/God/All and it was all working. I promised her, as I do whenever she begins to look boggled by what she imagines will be the expending of unpleasant effort, that I wasn't planning on training her for the marathon, yet. She laughed.
    Now, why do I include all this detail? Precisely because the truth and the generality of our adventure lie in the detail. As well, my learning and growing in this experience both happen in the detail. My feeling is the most important service this journal and site provides is realistic encouragement for other caregivers out there. We really don't need greeting card sentiment, diabetically sweet inspirational poetry, vague, pretty platitudes and invitations to see our loved ones ensconced in exaggerated romantic visions. What we need to see, hear about and talk about is the dirt, the gritty detail, exact descriptions, how we deal with it, what we learn as we deal, how enspirited we feel and how our perspective enlarges when we've dealt (either successfully or unsuccessfully) with yet another back street circumstance. I know from experience that there is nothing more inspiring than working in and through that dirty detail. It's something all caregivers come to know.
    Lastly, refusing to hide the dirty detail of caregiving adds a measure of dignity to our loved ones that cannot be granted in any other way and, finally, produces the most inspired and inspiring experience of all: Seeing life, in all its guises, as awe inspiring and awe-full.
    When we caregivers talk dirty detail, listen to us. I promise you, if you listen to the end, it will be more exhilarating than a million glossy greeting card sentiments.
    It's late. I need some sleep. I want to be able to greet whatever might happen tomorrow refreshed and able to be completely absorbed in another day of this amazing journey.
- posted by gail rae @ 02:25  0 comments   email...this post