Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
"The doctor says Mrs. Hudson does not need blood.
She's 8.3 and that's high enough."
"Oh, okay! Well, I'll let her sleep and we'll see you next Wednesday!"
My mother will not appreciate this for another couple of hours (since she retired at about 2300 last night, I'll probably be awakening her around 1100 today, it'll be the first 12 hour sleep night she's had in three days) but, despite her belief that she definitely would be going in for blood, despite her seeming eagerness to do so simply because she likes this doctor, I think she'll be very pleased when I awaken her. She will feel rested, she will not fight arising more than usual and I know that she'll relax, internally and externally.
I didn't bother to ask for copies of those tests that have already been processed. The hospital lab told me which results will not be available until some time early next week, as they are sent out, and, frankly, that includes most of the tests. Here's a list of what tests were requested:
- Erythropoietin Level
- Serum Protein Electrophoresis
- Quantitative Immunoglobulins
- Beta-2 Microglobulins
- Type & Hold
Although I'd like to see her hemoglobin boosted as quickly as possible, since all the other tests are designed to determine her elligibility for other methods and we seem to have had, so far, some success at keeping her hemoglobin in the 8's, I'm satisfied. She'll remain wonky and a bit weak for some days, but I'm okay with that. We've gotten used to it.
The blood draw for yesterday's tests was massive. Although I immediately began building her back from the time I rolled her out of the lab and into the cafeteria, including giving her an extra iron pill with dinner, which I may also do today, after her nap she admitted to feeling "weak" (which is to say, weaker than either of us is used to) and had a bit of trouble "depending on [her] legs." The last half of the day became a wheel chair day. However, after a snack of peanuts and V-8 juice, which she did not refuse, dinner (a hearty, ham-filled bean soup with MCS's home made Bread & Butter Pickles), lots of liquids, some movies and scintillating conversation, she almost completely revived. She insisted on walking, aided by only the walls, counters and banisters of our snug, close home, into the bathroom and into bed on her own. She did pretty good. She refused, though, her usual nightly leg rub down. She was so tired that she was afraid she's fall asleep in the rocking chair, to which she had moved about an hour or so after dinner. Since we've learned that moving her after awakening her from dozing in her rocker is a tricky procedure, at best, the last thing either of us wanted was to have to call the paramedics to pick her up off the floor on the way to bed.
I am, frankly, fairly exhausted, myself. A wheelchair evening is rigorous. As well, I was so keyed up after Mom retired that I stayed up until 0100 watching Law & Order, et al repeats, then tossed and turned in bed past 0230, the last time I looked at the clock.
Despite Mom's low hemoglobin, she has followed her newly formed habit of awakening on her own after a nap of 1.5 - 2 hours, which continues to surprise and delight me. Her spirit remains high, her will remains strong. Her right eye continues to swim in white, which is common when she is sick or her anemia is challenging. I expect that her "stupid silly" behavior will continue until her anemia is addressed, but that isn't a problem for either of us. If anything, it's actually fun because she spends more time than usual striking up old songs and playing with the words; so there's a lot of singing around here when she's running low on hemoglobin.
I want to take a moment to address Novabella's much appreciated comment on the immediately previous post. She makes an excellent point of which I hadn't thought and I want to underline: Why are we soooo astonished when we receive decent medical customer service?!?
Funny, too, that when one complains about service or products from just about any other business (unless the business is clearly fraudulent) the purveyors are not only expected to step up to the plate and correct the situation, we assume that they will try to please us. In medicine, my experience tells me that we can't take this for granted. Sometimes the business of medicine does this. My experience with the Mesa, AZ, hospital in 2004 follows this example. However, more often my mother and I have been ignored, pushed back or dismissed (literally: Two doctors have dismissed my mother because of my efforts to get information, my refusal of procedures that were advised against by second opinion physicians and my insistence on pointing out deplorable service).
At least in this community in which we now live permanently, the situation is getting worse. A couple of weeks ago, after cold calling physicians from the phone book, calling recommendations from friends and from Mom's hematologist and still having my mother end up empty-local-PCPed, I finally called the local hospital physician referral number. Turns out, in Prescott and Prescott Valley there are only three physicians who are still taking new patients whose primary insurance is Medicare. They don't even want to hear what a Medicare client's secondary insurance is. Of those three I was warned away from one by four different people. We are on wait lists with the other two. I asked the hospital referral person why this situation had developed here. Her response was the same as the lecture I received from Dr. Seller's Market on July 30th, 2004: That Medicare doesn't pay enough. I mentioned to her that this doesn't seem to be a problem in "The Valley" (The Phoenix metrocomplex) and asked if this had anything to do with the possibility that Medicare pays less in rural communities. She offered a verbal shrug: "Probably."
Then, on Wednesday while we were sitting in the hematologist's examining room waiting to be seen, I overheard an interesting conversation just outside the door. One of the office personnel was asking an older couple if they'd secured a PCP. They responded that they had and proceeded to give the name and address of a doctor in the Phoenix West Valley. No one expressed surprise. I studied the couple and noted that they appeared competent to travel back and forth, if necessary, although I assume that much of the treatment they are seeking will take place up here through this consulting physician. This is, apparently, a typical situation, up here. Oddly, upon realizing this, I felt a bit less desperate. It seems we will not be bounced from this hematologist's care if we are not able to secure a local PCP "immediately".
Thus, despite all the propaganda being disseminated through organizations like and including AARP, becoming a better informed patient and "taking control" of one's medical care remains a slippery slope and it appears as though it's going to get worse for awhile. The medical-industrial complex considers itself under siege and is trying to preserve its power. We, the clients, consider ourselves under siege and are trying, with sinking expectations, to find adequate medical care that doesn't bankrupt us. In the meantime, we all expect to be treated badly, from both medical and service perspectives, and remain "astonished" when we receive "good service".
How in the world can we ever say, at this time, that we have "good" medical care in this country and, apparently, others, as well, when Medicine is afraid of us and we are afraid of Medicine?
I know this above rant doesn't add much to what Novabella said, but, at this time, I think it needs to be repeated, over and over and over. Thank you, Novabella, for striking up the chorus once again.
Did I mention that the first time I contacted our new hematologist...
...to ask whether he'd be willing to consult with an out of town physician the man answered his own office phone? When was the last time you encountered a doctor who answered his own office phone? This suggested to me:
- He isn't afraid of his practice.
- He isn't afraid of his patients.
- He is, rather, engaged in his work and confident enough in his abilities and performance to step up to whatever the day, and his phone, may bring into his life.
While Mom and I filled out forms and I handed over the documents I'd copied for their files (the usual legal ones that all medical offices appreciate even if they forget to ask for them), the clients seated on either side of Mom and me initiated conversations about how great their experiences with these two (it's a partnership) doctors are. Astonishing!
Since I had not pre-scouted the area, I'd given us waaay more time than we needed to make our appointment on time. Despite the high activity of the office and the coming and going of patients, we were ushered into an examination room early and apologies were offered for keeping us waiting! Yeow!
Our hematologist was not only thorough in his questioning, he listened, asked further questions about what I offered, commented on what he noticed in her most recent blood tests and conducted, doctor to patient, the usual survey, the one patients normally fill out on paper asking for physical details like height, weight, family history of disease and death and medication sensitivies, filling in Mom's and my responses himself. He allowed us the time I needed to shout certain questions directly into her ear so that she could have the dignity of answering on her own behalf. He allowed her to answer some of them wrong and looked to me for correction. He answered my questions about what his understanding was of what her PCP wanted from him. He is the first medical professional in three years who acknowledged that her kidney functions, however "fine" her electrolytes looked, were not "fine", as three other doctors have pronounced them.
Another medical professional, I believe she may have been the other doctor at the clinic, observed the way my mother uses the walker, tried to coax her (as I do at least 50 times a day) to place herself closer to the walker and walk straighter, then, when it was obvious that my mother simply wasn't going to comply, at least not fully, sympathized with me, asked if Mom had "a bad heart", which I confirmed since, at the very least, she has an overburdened, tired heart, then went on to explain not only that my mother's walkering behavior was typical of people harboring my mother's physical challenges, but that she had exactly the same experience with her mother as I'm having with mine, also showered her mother with constant coaching and was similarly unsuccessful.
Not only was I well pleased with our visit, today, so was my mother. She's asked me several times to remind her of the doctor's name and, with each reminder, has said, "I like him." She also, surprisingly, absorbed an unusual amount of the conversation that went on around her. We are slated to have her blood drawn for several tests tomorrow at the hospital lab. She remembers that the doctor ordered these tests as a prelude to a transfusion. I've confirmed this for her a couple of times, tonight, when she's brought it up, adding that it's not an absolute certainty that she'll be receiving a transfusion on Friday, but highly probable. My mother's response has been, "I don't know about that. I think he mentioned that I will have a transfusion." Although he actually didn't, I have to concede that my mother was so finely tuned into what he was saying that she may have picked up on some undercurrent that I didn't.
Additionally, she isn't fighting the possibility of this transfusion. I think this is because she not only likes this doctor but trusts him implicitly, for which I am ever grateful. It is not that she doesn't have similar feelings about her PCP; she does. But, from her perspective, he has never been directly involved in her transfusions. She's never been in on the conversations about them. With this doctor, she was there for the whole thing, heard him utter the words, was able to follow his conversation about her blood and her anemia...and, however little or much she may actually have understood, his effort to involve her in the conversation allowed her to connect him directly with the state of her health and trust his decisions.
Throughout the evening she has been resistant to the idea of arising "early", yet again, tomorrow, without breakfast (some of the tests require fasting), so we've had a few conversations in which I've slowly but surely planted the idea that we need to cooperate with the doctor as much as we can. He'd like the results in the afternoon so he can make a decision about a transfusion and, if necessary, set it for Friday. Thus, little by little, I've coaxed her into an awakening time, tomorrow morning, at 9:00 am, working down from her idea of a 10:30 am rising. It may seem silly for me to work through this with her, especially since her dementia will likely sap all this information from her conscious mind and she'll be surprised when I bend over her "good" ear tomorrow morning and say, "Good Morning Mary Sunshine." However, my experience tells me that something of her subconscious mind retains these evening discussions and, even though I'll have to remind her what our plans are for the day that demand an early rising, she is much easier to get out of bed when we've worked out the details the evening before and she's agreed to them.
Too, I offered a small bribe. I told her that, after the blood draw, instead of going home for breakfast we could scout out the food available in the hospital cafeteria. She likes cafeteria settings. Besides, during her last blood draw I tried the cafeteria's salad bar. It was more than passable. It will be like going out to eat for her. We haven't done that in a long, long time.
I expect the next few days to be hectic. I'm rather hoping (and sure) that she will be receiving a transfusion on Friday. It will be nice to have the evening to prepare for it. These are lengthy, boring procedures. Knowing in advance that one is coming up, we can take a stash of reading material, money for cafeteria intervention when necessary and, maybe, even take along Sorry and play a few rounds. I expect, as well, there will be time for a nap for her if she decides she'd like one. We'll definitely take along a comfortable pillow.
Transfusion or no, some of the tests the hematologist has ordered are for the purpose of exploring the possibility of epo shots for Mom. I'm relieved about this. I know there are risks involved, some of them vaguely suggested in fairly recent reports. My feeling, though, is that the woman made it to 90 and in tremendous spirits. It's all icing on the cake from here. Being 90, for my mother, is a day-to-day risk in itself, even though she doesn't consider it so (and, I have to concede, her refusal to acknowledge the risks probably lowers them). If epo shots here and there can keep her anemia at bay enough so that she has more energy, is slightly less mentally wonky (what I often call "stupid-silly", a condition that distinguishes her episodes of low hemoglobin) and she doesn't have to endure really frequent transfusions, well, damn, let's sweeten up that icing.
If you're interested in watching my mother's hemoglobin bounce around...
...you'll be thrilled to know that I just finished entering all her blood tests since 1/21/08, as follows:
The most interesting is the one for 3/13/08. That's the one drawn during her last PCP appointment. Interesting observations:
- Despite the fact that she's taking 900 mg of iron daily, her Iron reading is in the normal range.
- Although still out of range, her cholesterol numbers are coming down, even though she was not fasting at the time of the blood draw.
- Looking over all for tests, I'm surprised at the hemoglobin drop on 3/13/08. I'm wondering if it took a .5 plunge based strictly on her physical reaction to the trip that day.
I'm ready for the appointment with the hematologist on Wednesday. Today I faxed him an Anemia History, a Diagnostic Review of all her conditions and a Current Medication Chart. It could be that he would be able to cull all this information from the records that her PCP faxed to him last week, but I'm hoping my reviews will make things easier on him.
Over the last week or so, every night, Mom has been obsessed with the idea that she "has to go to school tomorrow." I haven't asked whether she has to go as a teacher or a student. She's been using it as an excuse to go to bed really early, even though each time she's admitted that she's not tired, she just "has to get up early for school." Since she's freely admitting her lack of sleepiness, rather than playing along I've been disabusing her of the notion that she's "got school tomorrow". It's the funniest thing, really. Each night, once I convince her that she doesn't have to worry about school the following day, usually by reminding her that she's retired, she's 90, she used to "have school" but she doesn't, any longer, she heaves a huge sigh of relief and says, "Well, good, I didn't want to go to bed, anyway. Let's watch another movie."
One of the movies (besides Jesus movies, from which I am pleased to announce my mother needed occasional breaks) we watched was a rental called The Simple Life of Noah Dearborn. I had very little idea what it was about when I rented it, but my mother loves movies that feature Sydney Poitier and this was one we hadn't watched. During the movie, an intriguing comment was made by a character in the movie about one of the possible reasons why some people live to be very old and very healthy. I've transcribed the bit of conversation from the movie, below:
YOUNG NOAH: Mom says you never get sick. She says the Lord never wants to take you. She said you're the oldest man in the world.Mind you, I don't think this is the be all and end all. I think that a lot of people live to be old and remain healthy who aren't particularly satisfied with or involved in their lives. I've met some of them. As well, I've known a few people who were very involved in their work in the world, completely and ecstatically taken over with it and still fell prey to illness and a short lifespan. However, I've known a few that fit the above description, as well, the most prominent being my paternal grandfather. Although he didn't appear to obviously be called to a recognizable form of work, as is the character Noah Dearborn and his Uncle Silas, it would be fair to say that his "work", with which he was consumed, was a keen interest in every aspect of life of which he became aware. When he died in his mid nineties not a few relatives observed that after he broke his knee six months earlier and was no longer able to get around easily, which was important to his curiosity and his character, he "lost interest", as many said, in life and left. "Natural causes due to old age" was the official explanation on his death certificate.
HIS UNCLE SILAS: Well, I'll tell you a secret. When a man loves his work, truly loves it, sickness and death will get tired of chasing you and just finally give up and leave you alone. Clear your mind of all that concerns you and do the right thing with those hands that God gave you.
Although my mother is by no means one of the healthy old, despite her dementia and her physical challenges she retains a keen interest in life and I have often speculated that it is this interest that keeps her going. Her dementia, in fact, works on her behalf in a peculiar way: It keeps her convinced that she is able to do and continues to do much more than she actually can and does.
It's not all attitude, I'm convinced of that. My observation tells me that, in many cases, attitude has absolutely nothing to do with "it". If it were all, or even mostly, attitude many, many people who've been cut down prematurely (no matter what their age) would be healthy and alive or would have lived much longer lives. As I write this I'm ticking off a lengthy list of people I know (or of whom I know) to whom this applies. However, if one has fairly good genes, lives during a time and in a place when and where certain communicable diseases are not running rampant, lives in an area (or areas) where environmental factors are not stealing energy from or twisting the energy of the living and has the luck not to have inherited and/or developed a devastating internal-haywire type of disease, I think an attitude that incorporates a keen, life-long interest in something, anything, helps camouflage some people, like my mother, from the grim reaper.
As well, I'm truly amazed that the woman is still alive and has a kind of internal drive which allows me to know that, for instance, barring an asteroid falling on our house, she'll be alive tomorrow. So, it doesn't have much to do with whether others have faith in one's ability to survive, either.
What is it? What is it? What is it? I know we're trying busily, at this point in our evolution, to crack the code. We even think we're close. I think, though, that we have many more surprises in store for us. Some of those surprises will surely be unpleasant. I suspect, for instance, that my mother's and her parents' generations will sport longer life spans in the actuarial tables than will mine, at least in this country, despite all the "medical miracles" that have been developed over the last century. Some of the surprises, though, will be very pleasant and generate within us hope and the determination to continue to pursue the question of longevity; and they will be mind-boggling surprises like, well, my mother.
One more amusing thing...
...if you've ever wondered how to verbally flip someone the bird in Chinese, you'll be interested in the Anonymous comment left on my most recently archived post. You'll need to scroll to the end of the post to read it. Not sure to what the commenter was referring in the post, but the comment was fun to read.
Forgot to mention, for the foodies...
...earlier today I published the directions and results of my latest pot roast creation, Hoisin Pot Roast over that the food area. Mmmm, mmmm, mmmm. If you like pot roast, mosey on over there. It's my best one, yet.
This coming Wednesday my mother has an appointment...
...with the local hematologist who has agreed to consult with her Mesa PCP regarding her current anemia problems. She's not nervous at all, of course. I'm very nervous.
Her hemoglobin continues to boing around in the 8's. Last Thursday it was 8.5. All other significators remain in line with her hemoglobin and within her personal "range". While not good, this is decidedly better than the 8.0 reading on March 13th.
Today I will be compiling what I hope will be a brief history of her anemia odyssey and faxing it to the hematologist tomorrow. He's received the records from her PCP's office. My assumption is that these records include those from the clinic through which her PCP practiced prior to setting up his own concern, although I have my doubts about this since her PCP's departure was never specifically acknowledged by his prior clinic. I had to hunt for the man after he left, which wasn't easy since his listings were all "new" and were a long time in being incorporated into traditional listing sites. 411 hung onto his old clinic listing long past my success in finding him on my own.
Chiefly, I want to let the local hematologist know that I have copies of all blood tests and most imaging tests done on my mother throughout the period in which her anemia was officially recognized and scouted, in case he hasn't received this information, since most of it was compiled while her PCP was with his first clinic. I also want to provide him with the names and contact information of all doctors and institutions that consulted on her case and hold records on her, let him know how the current phase of treatment was devised and, as well, make him aware of my own concerns in regard to investigation and treatment.
As well as being anxious about my mother's condition, I am also anxious about how this treatise I'm planning will be received. Although I've spoken with him, I have no idea how he feels about patients and medical advocates who are intimately involved in their own or another's care. In my head I'm designing the document to be as factual as possible and trying to leave out my own feelings about the frustrating experiences we've had involving the confusion about the cause of her anemia and her suitability for aggressive searches for causes.
And, of course, I'm keeping my fingers crossed. I also crossed a line of belief, two days ago, in regard to my mother's participation in her own care. She is, of course, oblivious about the state of her health and, despite her intense lethargy, is personally convinced that she feels "fine". She is also a woman of God, specifically a modified Christian version of God, and of prayer. She continues to pray every night (not on her knees, mind you, but, nonetheless, she prays). I decided, for better or worse, to enlist her efforts in managing her anemia by exhorting her to pray. It isn't uncommon for me to ask her to pray for herself, which, by her generous nature, she is generally loathe to do. I think she believes that she's "covered", although I'm not sure how she thinks this mechanism works. At any rate, night before last after I'd spent the day focused on her bouts of paleness interspersed with bouts of bright red lips an hour or so after downing yet another 150 mg dose of iron polysaccharide, I said to her, "Mom, you need to pray for yourself tonight. You need to pray specifically about your anemia. You need to pray for its alleviation. You need to pray that, whether or not a cause is found, whether or not you are even poised for a search for a cause, somehow or another a way is discovered that will boost your hemoglobin."
Yes, I'm aware that she's not handy with words like "hemoglobin", but I used them, anyway. I started in on her while we were preparing her for bed and continued right up to the time I kissed her goodnight. I am sure she understood the seriousness of the plea. "Don't just pull a little 'thy will be done' stunt, Mom," I added. "Keep in mind, 'ask and ye shall receive.' 'The squeaky wheel gets the grease.' Consider this: With close to seven billion souls at your god's disposal, you need to be more than a little self-involved regarding this issue. Push yourself to the front of the line. Be assertive. Think of it this way: You are convinced that you're not done here, that you've got several years to go, and you want those years. I am constantly aware of your spirit and your will and I agree with you. One way or another, I know you're going to be around for awhile. Wouldn't it be nice if you could move through that time with a bit more energy than is now at your disposal? Wouldn't you like that?"
"Ask for that, then."
I went through the same exhortation last night, as well. This time, Mom said to me, "You should pray too."
If you've read a fair amount of this journal over the last few years you have a good idea of my positions on such subjects as gods and prayer. It's fair to say that I am agnostic about both, although I tend to I carry on a constant internal conversation with all the possibilities inherent in the Mystery of Life, which is my definition of "god"; the constant internal conversation being my definition of "prayer." My usual response to her plea would be a windy sermon on my verions of "god" and "prayer", with which she is so familiar she no longer pays attention. I didn't respond like this last night. I just said, "Yes. I will."
And, of course, I've been doing this.
I can't say that her first efforts worked, but I can't say they didn't. I noticed, for instance, that her nap, out of which it's been hell, in the last several weeks, to awaken her even after three hours, ended of her own accord yesterday after an hour and a half with her having emerged from her bedroom unbeknownst to me to shuffle over to the banister surrounding the living room and hail me. She'd taken off her oxygen cannula but wasn't breathing like a race horse in the last lap. We've been doing a "Jesus movie" weekend in honor of Easter, of which she's been unusually aware this year. Yesterday she was primed for both of the extremely long movies we watched, then devoured some of the special bible history programs I found on one of the cable channels. Both the movies and the programs were littered with bits of to-the-point conversation. As well, immediately upon awakening, while we were still in the bathroom getting her ready for the evening, she launched us into a discussion of the phrase "living room" and what it might have signified throughout ages and cultures. When she retired last night, although her retirement was "early" at 2330, I noticed that her bedroom light remained on until sometime between 0030 and 0100 this morning. I know she was reading because right after I kissed her goodnight she picked up one of the books from her night stand and began leafing through it for a "good part". I'm not sure whether she remembered my exhortation to pray again for herself. I considered, at 0030, going in to remind her but decided, Nah, one way or another she'll remember.
So, "off we go [again], into the wild, blue yonder," a song my mother has lately added to her repertoire of frequent song bursts. Who knows where we'll land. I'm hoping (yes, Mom, that's "praying") that it's someplace with a somewhat higher hemoblobin count than is presently the case. And, in the meantime, she always looks ruddier against a blue background.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson