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 trip was just this side of harrowing...
...so I'll probably write about it slowly over a few (or more) posts. For a year and a half, now, I've observed that these trips are successively harder on Mom, despite her love of travel and her heightened interest in seeing family, which we managed on this one. But, my oh my, on our way back up the one-time continental slope of the rim that separates the low, sandy desert here in Arizona from the high scrub desert, she said, "I hope we never have to do that again."
I'd been thinking this, too, since before we started out Thursday morning. I hope, over the next few months, we have some luck finding her a local doctor with whom I can work. That's important...but, if all we can find is a local doctor who pays absolutely no attention to me, well, in the interest of keeping all her medical care up here, I expect I can probably be "flexible", whatever that might mean.
Something her still current doctor mentioned at the appointment that I'd not known and want to remember: "[A hemoglobin count of] 9.1 in someone with emphysema, like your mother, is the same as 7.1 in someone [without lung issues]." This doesn't surprise me. Anemia, of course, effects oxygen absorption. So does emphysema. He also mentioned something about the possibility of "shots" if she had local care. I don't know whether her meant epo shots, iron shots, I didn't ask, although I probably should have but I was beginning to reel, even though our trip wasn't yet accomplished by half. If I find an available doctor, here, I'll mention that.
Aside from being in a weakened condition, in part because of the lingering effects of her cold and in part because of her low hemoglobin, Mom was in characteristically "rare form", as she would put it. I've often wondered what that phrase means to the general population, although I can tell you what it means from Mom's perspective: She was in awfully good spirits, thrilled to be made over and took such full advantage of the situation that I often had to step in, when she was about to allow MPS, who has a tricky back, to literally lift her off chairs, which, despite Mom's weakened condition, was not necessary. It was as though she melted into a puddle from the heat of the love surrounding her in order to be scooped up in a ladle and passed around the house. MPS was surprised, somewhat unpleasantly, I think, each time I stepped in and gently but firmly insisted that Mom arise with nothing more than steadying arm support. I made concessions regarding my niece's bed, on which Mom took a nap, because it was one of those high beds...seems they are not only hotel fashion, anymore, they are the height of home fashion, now. The top mattress, to, was very soft which, I understand, is current home fashion as well as commercial fashion, which made it impossible for my mother to "get comfortable" without us moving her around on the bed into her favorite and most comfortable sleep position. By the time we were slated to leave for home, I judged that Mom was so tired that it would be best to leave her in her footsies, rather than shod her, and transport her to the car in the wheelchair, even though she had walkered into the house when we first arrived and continued walkering from room to room most of the day. In the middle of this extensively physical day for Mom, MPS and I, when at the doctor's, although I insisted on wheeling her in and out of the office, she insisted on rising out of the wheel chair, walking across the examining room to a chair, then doing the reverse after the appointment. She did so with ease and aplomb. She's great in performance for acquaintances and strangers. She was, too, her usual chatty, entertaining self in the waiting room. I indulged her and we did our usual Waiting Area Routine, even though our audience consisted of only two other patients, one of whom was an elderly man who had fallen asleep in his chair, the other of whom was an elderly woman whose interest could not be seduced from the Sports Illustrated magazine she was reading.
The day was so physically arduous for me (and, I'm sure, for MPS, as well, although, since this sort of day doesn't happen for her, often and she was very pleased to visit with my mother, I suspect that she would not characterize her experience so) and I was so exhausted from the labor and the cup after cup of unusually strong coffee with which I kept myself going, that I scolded Mom on the way home. I know, I know, to most people who haven't cared for an elderly infirm person, a scolding, no matter how lenient, seems uncalled for when one's care recipient is 90, beset by a variety of health issues and enduring a trip that, regardless of her anticipation, proved to be an unusual (for her) physical challenge. But, I live with the woman and I wanted her to know that I was on to her. I also wanted to remind her that if one is capable of being considerate of others, needing extra care and attention is no reason to throw that consideration out the window.
I was not harsh, just firm and meticulously analytical of her behavior. I pointed out the times, that day, when her laxity had been appropriate and times when it had not been appropriate. She didn't argue. She quietly took in what I had to say. She didn't respond with her usual, dismissive, "I suppose so," which is one of her standard responses when we encounter disagreements throughout our usual days.
She was quiet most of the way home after that, except a short, interesting conversation that began with her asking me if I had heard anything, lately, about "Lynell Price" (I'm guessing at the spelling of the first name). The name was so unfamiliar to me that when I told her, "I have no idea who she is, Mom, fill me in," Mom responded, with that have-you-lost-your-mind disdain, "It's a he, not a she!"
Seems that Lynell is a young man Mom dated, probably fairly exclusively, throughout high school. She said she received some letters from him "a while ago" after he went to college but hadn't heard anything from him for a couple of months.
I peppered her with questions:
- What did he look like?
She couldn't remember, not even seemingly large details such as whether he was taller than she, to which she responded, "Well, I suppose so."
- How had she met him?
Absolutely no idea, wasn't even sure that it had been through high school classes.
- What did his parents do?
She wasn't sure, but she supposed that they were farmers, a safe supposition, considering that they all lived in farming country in Iowa, at the time, although when they lived there her parents quickly gave up farming after trying their hand at it.
- How did he feel about her?
Apparently, he wanted to marry her and was a persistent suitor. She, however, admitted to me that she "didn't like him that much."
- "You mean you didn't like him enough to marry him?" I asked.
"Oh, she said, "there were other things."
"Then," I prodded, "why did you date him for so long?"
"What else was there to do?" she asked.
Apparently, not much else.
- What didn't she like about him?
She couldn't remember, then paused, reflected and said, "Could be that's what I didn't like about him; there wasn't much to remember."
- "Then," I continued, "why are you remembering him now?"
"Just wondering what happened to him," she said. She didn't, however, remember what he studied in college, if he returned to their town afterwards, if he ever married, etc. She mentioned, though, that he probably "settled down around there." He probably did, which my mother did not. "I just thought you might have heard something from him," she mentioned.
"Well, Mom, I didn't know him. I didn't even know what his gender was. So, I guess you're out of luck with me."
She sighed. "I guess I'll have to ask mother," she said. "She's good about keeping up with everyone."
Unlike me, I guess.
Monday I'll call to see if the next name on the list I've compiled of possible local doctors is back from vacation and willing to take her on as a patient. I hope so. If not, though, her current PCP has authorized us to bring in a local hematologist to whom I've talked on consult so that her anemia, the most pressing of her health issues, can be more easily and, perhaps, more completely addressed.
Rural medicine. Jesus. Well, I guess it's not just rural medicine. MPS informed me of the current and extreme doctor shortage here in the U.S. during one of our much needed sister times on Thursday. She's in a position to know, as her MPBIL works through a local hospital (not a physician) and her son is back in school (after becoming a jet mechanic in order to subsidize further education) in pre-med with the hopes of becoming an orthopedist.
In the meantime, I'm glad I've got the weekend to reorient myself. I'm still plowing through recovery. Even though I couldn't settle down enough to get myself to bed until 0300 this morning (I'm assuming I'm still running on the extraordinary amount of caffeine I ingested on Thursday), I was wide awake at 0815, still exhausted but depressingly ready to ride with nowhere to go.
Oh, yeah. Lots of blood was drawn during Mom's appointment. Lots of tests were slated. Guess I'd better get around to entering the last four or so results before the new ones arrive.
Hoh. Well, later.
Health Review: 3/11/08
She remains on three 10 mg doses of lisinopril per day. I tried again, in January, 2008, upping her dose to four 10 mg doses per day. Just as in September of last year, to weeks into the new dosage she began collapsing, so I scaled the dose back. Because of her recent bout with very low hemoglobin, her blood pressure have been up and down. They are reviving. Frankly, I'd rather see her with slightly elevated blood pressure and not in danger of collapsing than otherwise. I have attached a short table of her blood pressures (which I've been taking erratically) which covers the last month or so.
Control has been difficult over the last few months because of her collapsing episodes, which were sometimes followed with acetaminophen when she had muscle aches, and her bad cold, from which she is recovering. The guaifenex and acetaminophen played havoc with her blood sugar. Through the holidays and over the last couple of months on several occasions I've given her three doses of 10 mg glipizide/day. The extra is always administered in the evening. Her blood sugar seems to be coming back into line, now. An abbreviated table that covers the last few months is attached. The taking of readings has been erratic.
No change. Macrodantin continues to keep her UTI free.
Lately her energy level has been very low. It has been slowly but surely reviving over the last week.
Skin & Circulation:
Excellent. No recurrence of the squamous cell carcinoma that I can tell.
Appetite & Diet:
No change. Her appetite did not suffer during her cold or her critical anemia.
Will & Spirit:
Reain strong and high, respectively.
Meds & Supplements:
Generally the same as before. See attached updated list.
No furosemide administered this period.
During her cold her O2 usage went to to 3-4/lpm; occasionally 5/lpm if she was moving around. This is reversing itself. She is now at 3/lpm when sitting and 4/lpm when moving and sleeping.
Continues to eliminate every 24-48 hrs; usually every 36 hrs. Fecal consistency, volume and ease of elimination remain good to excellent overall. No laxative use necessary this last period.
ISSUES FOR APPOINTMENT ON 3/13/08 @ 1400:
- ANEMIA: The attached CBC, taken 3/10/08, shows that she is recovering at about .5 points per week. Although you mentioned that it wasn't necessary to take her in for another two weeks and her overall demeanor has been indicating that she's recovering, I was a little nervous so I took her in yesterday. The only oddities in the report are the poikilocytosis and the anisociytosis counts. I looked them up and they are both occasionally associated with anemia, so I'm hoping I don't need to worry about these. Bless her heart, she maintains the ability to recover well from health set backs.
- RX REFILLS: Three refills this period:
Nitrofurantoin MR 100 mg (administered once per day)
Lisinopril 10 mg (three tablets per day)
Protonix 40 mg (1 tablet per day)
- FINDING A PCP IN PRESCOTT: I am still trying to find a PCP for her up here. At present, I am waiting for a call back from a doctor who is supposedly taking new patients but is on vacation at the moment. At this point, if you are concerned about her current anemia profile, I'm thinking that it might be a good time to write a consult order for the Prescott hemotologist who said he would consult with you. I'll leave this option up to you. If your concern is low, you may wish to wait on this. I'm keeping my fingers crossed that we'll find someone up here within a reasonable amount of time.
- BLOOD PRESSURE: I am considering giving her 5 mg lisinopril before her nap, in order to up her dose a little, maybe control her systolic a little better and, hopefully, avoid the weakness that an extra 10 mg per day seems to cause, but wanted to wait until I talked to you about it.
- Is it time for another Ha1c? Any other tests you'd like done?
I am in the process of faxing...
...Mom's Health Review in anticipation of her doctor's appointment in Mesa at 1400 this coming Thursday. I have just three minutes before it will be time to awaken her, so I'll transfer all the information over here later. In the meantime, in case anyone has been awaiting her hemoglobin reading with bated breath: It was 9.1 at the time of her draw, yesterday, which was at 11:40 am. The good news is that her hemoglobin is, apparently, continuing to rise. I was hoping for better, but it looks like it's following a schedule of a .5 rise per week, which is probably why her doctor advised that I not bother to check it for "14 days". It is, after all, recovering without the benefit of a transfusion boost. At any rate, I'm going to ask him if he wants me to have a CBC done once a week for a month, or wait for two weeks. A quick check of last fall's three month long Blood Draw Jamboree immediately following her transfusion tells me that her recovery is approximately in line with what happened after the transfusion.
At any rate, she is out of the transfusion woods, for the moment, and I expect her to stay out, barring severe colds, the need for acetaminophen (which I use very judiciously with her and she doesn't like to take, anyway), etc.
I am aware that I've got at least four Blood Draws to post...not sure when I'll be getting around to that, but I've covered, here, everything that was important.
Funny, I was primed to be extremely relieved when I picked up the results of yesterday's draw and viewed them. I think I was anticipating a hemoglobin reading that meant I could let up on some of that shoulder-to-the-wheel pressure I've been applying to Mom's health, lately. When I saw the "9.1" reading I experienced an overwhelming, palpable feeling of exhaustion. Oh well. I've been here before. I'm sure I'll be here again. I'll just try to take the next few days as easily as possible. I'm already anticipating that I'll need to take a cold pill on the morning of our trip, just in order to keep myself going throughout the entire day. Thank the gods for cold pills!
I've been prepping Mom for at least a few days...
...and most especially last night just before bed...to expect an early rising this morning in order to have her "blood test" (the words I try to use when talking with her, since "blood draw" confuses her) done in time for the results to be available tomorrow morning, so it was with some amusement that I considered her resistance to an unusually early rising this morning at 1000 (she retired at midnight last night, so she only got 10 of her usual 12 hours of sleep). "I've decided not to go into class today. I just don't feel up to it," she said once her eyes were open, she had exited Dream Land (or the Dead Zone, whichever) and realized I was expecting her to get up.
I grinned. "Well, good," I said, "since you'll be missing school today in order to have another blood test."
She groaned, not good-naturedly. But, she complied.
While we were dashing around preparing her for the trip, I couldn't help but ponder why she might have thought she was going to school today. Although she often considers whether or not she'll teach or continue her education "next year", so far her discussions about school have all been future, rather than present oriented.
Finally, on our way home from the blood draw, it hit me. It's the word "test". Apparently, last night, at least, that word made a stronger impression on her than "blood" and translated itself into having to go to class today.
Although I still can't predict exactly how she "performed" on her "test", today, I'm hopeful. First of all, her initial resistance was minor and easily negotiated, which means she feels good. Secondly, although I was not only expecting but practically insisting that she we use the wheel chair to move her in and out of the lab, she was adamant that she would use the walker. I took both and decided to let her try, since we'd have the wheel chair as back-up. Mind you, it's been a looooong time since she's done more walkering than around the house, and that hasn't been much. As well, the last few months have been generously sprinkled with half and whole wheel-chair-around-the-house days. But, I'll be damned if the woman didn't take hold of her walker and fairly march into the lab. She rested twice going in, but took both rests in standing mode at her insistence. She didn't rest at all on the way out. When I suggested a moment of rest halfway to the car, she gave me her signature indignant look and said, "You can rest if you want and catch up with me."
Thirdly, After the draw I decided, considering how good she was feeling, that I'd make short stop at our medical supply company to pick up an E-tank carrier I'd ordered and a few extra tanks of oxygen for the trip instead of waiting until this afternoon. Although I told her she was welcome to wait in the car as I'd only be a few minutes, she considered going in (which is a triumph), but decided, when we pulled into the parking lot, to remain in the car so she could admire the trees dotting the company's landscaping. Some of them are very large, very old maples and oaks. "I just love to look at trees when they don't have their leaves, yet," she said. "They have such character!"
I can't imagine that her hemoglobin is in transfusion range after all the energy she showed today.
Her blood pressure, this morning, was also in fighting range, which is to say she was annoyed that I was bothering to take it and tightened her arm in defiance, which is usual "good health" behavior for her, as I took it. She also insisted on chatting and moving her fingers during the procedure. When she's severly anemic she doesn't bother to resist and doesn't have the energy to be annoyed.
So, despite the fact that I continue to noticed "white" all over her, I have my fingers crossed. Maybe she's in the nines, maybe even the high nines. Might even be a little over 10. At any rate, today she had the energy for the trip. I'm hoping this continues. I've got beef meals planned through Wednesday night, starting with pot roast tonight. As well, we're visiting family this trip instead of staying in a hotel and she's excited about this. She even suggested it a couple of weeks ago.
A month ago I was afraid that this cold/anemia bout was going to do her in. Now I've refocused my sites on her 91st birthday this August. Her recuperative powers continue to amaze me. I guess I just have to remember never to count her down until she's actually out. I was so relieved by this realization that I was finally able to take a long and much needed nap this afternoon.
Where's the Beef?
In case you're wondering, it's here, almost every night. If it's not beef, it's dark meat chicken (for mom, white meat for me) or ground buffalo, when I can get it. Ever since her hemoglobin near crisis, I've been not only relying on her usual (since last September) 900 mg of iron polysaccharide per day, but I've been pushing the beef. Beef is the highest and most digestible common source of iron. Yes, I know all about dark green leafy vegetables, broccoli, blah, blah, blah, but if you want to really boost someone's hemo and hematocrit, you gotta go with the politically incorrect stuff, the stuff that has become the new cause of global warming. Buffalo is actually better, but it's hard to get, here. When I found some last week I bought three quarters of a pound, made some very flavorful hamburgers and assumed it would be available, well, whenever. Apparently it's only a sometime item, and snapped up quickly, at that. Venison is a cut or two above beef, too, and so is bear, but nobody's selling those here. Yet.
I forwent the CBC on Saturday, investing in the possibility that I'm not imagining Mom's increasingly peachy complexion. It's not all the way, there, yet, but I think it's getting there. Tomorrow, though, I've decided, it'll be time to draw some blood and see if her anemia really is improving. It's a tricky business, trying to tell, by sight, what Mom's hemoglobin might be. The second to the last time I expressed concern to her doctor's FNP that it might be "a little low" because I thought Mom looked pale was in late November. Her hemoglobin came in at a spectacular 11.0. Then, again, in January, I thought it might be in the nines and it was 10.1. When it came in at 8.1 on February 28th I was shocked that it was that low. I hadn't thought she looked that pale and figured, as well, that her weakness was primarily due to that horrible cold. Now, she's not nearly as weak, her blood pressure is up (it drops when she's severely anemic), she's standing much straighter than before, but every time I search her lips, her general complexion and her fingernails I imagine that I'm seeing too much white, even though I can also clearly see peach. I'm nervous. Although the doctor assured me last week that it wasn't necessary to draw for a CBC for "14 days", I simply can't wait, and I'm dreading the results.
She's still coughing a bit more than usual, still seems to be more tired than usual, but she's also still working off the dregs of her cold. All in all, although her bout with it was just as severe as mine, her fourth week is much easier on her than my fourth week was on me. Of course, my fourth week fell during her second week, which was a bear of a week for her and probably had a significant impact on how I felt. Her overall cold experience, as well, included plenty of rest. Mine did not.
I'm pleased that I've so far avoided taking her into the hospital for a blood transfusion. The husband of one of my very good friends up here was in the hospital ER last week having a severe cut from a fall stitched up and managed to also receive a hearty dose of this cold while he was there.
If it turns out that she needs a transfusion this week, I'll know on Tuesday and we'll do it then and continue our plan for her "routine" doctor's appointment on Thursday in Mesa. I'm sure, even if she needs a transfusion, it'll amount to only a pint and she'll be more than ready to travel on Thursday.
In the meantime, I continue to look for a local doctor. I've got yet another name that I'll be calling tomorrow. Truth is, I'm half expecting yet another "no". I've gotten ten "nos" in the last two months, seven of them in one blow. I feel like I'd have more luck taking out a sizable loan to subsidize her Mesa doctor's move up here.
Oh well. What can you do?
Busy, busy week ahead.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson