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.
I've checked in on The Mom...
...with a bit more than my usual obsessiveness this morning and have decided to let her have her 12. She looks better than she did yesterday, although she began to look better yesterday evening before I gave her the second iron supplement. Maybe this epo stuff kicks in more slowly than I've been hoping. I didn't run across any specific mention of the typical trajectory of effects from injected erythropoetin. The information is probably "there", I either didn't notice it or didn't search far enough, or both. I wasn't emotionally prepared, yesterday, for my usual thorough searches. The only bit I have is this paraphrased comment from MPS's long stint as a kidney dialysis tech, taken from a fairly recent conversation we had when I was considering epo therapy in conjunction with the media-discussed dark side of the therapy: "Yeah. I remember when someone's hemoglobin was low, we'd shoot 'em and it would come right up. Scary." For some ridiculous reason I assumed that "come right up" indicated maybe a 12-24 hour improvement window...and, as well, indicated a rise of at least a couple of points. Thinking about it now, those assumptions wouldn't make sense in light of the administrative details.
Last evening, though, after Mom's nap, she was able to further articulate what not feeling good meant. "I ache all over," she said.
"A lot or a little?"
"Oh, you know, enough to notice, but not enough to worry."
Although I'd asked her, earlier in the day, if not feeling good felt muscular and she'd answered in the negative, I asked again.
"That's it," she exclaimed.
"Can you define 'all over', Mom? Is it really 'all over'?"
"Well, my back," she moved her hand up and down her lower back, "and my legs."
Ah ha. I'm sure it was a reaction to her walkering stunts on Wednesday and told her so. She didn't agree, but she didn't disagree. I took her temperature, just to make sure, and it was spot on, for her, anyway. That strengthened my case.
"I'll tell you what," I said. How about I give you a full extra strength Tylenol (I usually give her half) with dinner (always with food, always) we'll forget about taking your blood sugar tonight and probably tomorrow (acetaminophen plays havoc with her blood sugar measurements), relax and enjoy the evening and we'll see how you feel later, and then tomorrow.
Sounded like a good idea to her. About four hours later, when I was rubbing her legs down with lotion just before she retired, I asked her how she felt.
"Oh, fine, just fine!" She was clearly surprised that I asked.
"Better than earlier?"
Her eyebrows rose. "What do you mean?" That's a good sign.
"Well, Mom, most of today you've been saying you felt achy all over. Do you still feel that way?"
"Well, no." She paused to reflect on her addled memory of past hours. "I feel good. I don't remember feeling 'achy'. Are you sure I said that?"
"You know what? It doesn't matter. I'm glad you're feeling good, now. You almost look, in fact, like you don't need a second iron pill, but I'm going to give it to you anyway, just in case. We'll reevaluate a second iron pill a day tomorrow."
"Oh, I don't think I'll need it tomorrow. I don't think I've ever needed those pills."
Dementia-Lite. Gotta love it.
Over the last few months I've been sleeping, occasionally, on the living room couch. It's not particularly comfortable. Each session involves more than a few wake-ups due to cramped arms or legs falling off the side. The living room is significantly warmer than I like for sleeping. When I sleep on the couch, I sleep in my clothes, which I never do when I "go to bed". Usually I end up in my own bed in the wee hours of the morning. I've been reckoning why I've been doing this, and haven't come up, yet, with a reliable answer, although I'm thinking that something about the living room makes me feel more protected than my bedroom and, I guess, lately, I've needed that sense of protection. Maybe it's more womb-like, or something, than my bedroom. Last night I again had a strong predilection for the couch. I decided, as usual, that I didn't want to unfold the damned thing (it's a futon disguised as a couch) because that involves rearranging the rest of the living room furniture, but, I surmised, maybe if I dress the couch with a bottom sheet, disrobe as usual, use a full length comforter and stack pillows on the head end in an attempt to ape my usual sleeping environment I might be more comfortable and sleep through the night. I remained on the couch for all my usual sleep hours, but was only slightly more comfortable. Instead of rousing several times, I roused only twice and was not cramped enough to rise and retreat to my usual bed.
I mention this because I've been thinking that sleeping in the living room on the couch is a new, recent behavior for me. I noticed, though, while transferring 2006 posts into their own archive, that in the summer of 2006 I mention this sleeping arrangement. I didn't read far enough to discover whether I'd speculated on why I was doing this. I'm not sure it was for the same reason(s) I'm now doing it. I was awfully prolific with posting, that summer, at all hours of the day and night. As well, it looks as though that summer was "a good one" for Mom and me, which means probably wasn't harboring any ulterior anxiety. I'm certainly harboring ulterior anxiety at this time. When I sleep on the couch my earshot of Mom's bedroom is also about four times further than when I'm in my usual bed. I've calculated, though, that the depth of my sleep is at least four times less when I sleep on the couch and hope that these two measurements cancel one another out. So far as I know, my calculations haven't been tested; at least, I haven't awakened to Mom flailing on the floor after a disastrous attempt to perform a bathroom run in the middle of the night.
I find it curious, though. Comfortable sleeping quarters are immensely important to me. I want my sleep to be shielded from everything but my internal physical and mental workings; and I want those to be well cushioned. I certainly don't forget, each night I decide for the couch rather than my bed, that I'm going to be uncomfortable and experience varying degrees of disturbed sleep, but I do it anyway, so the reward must be worth the trouble.
I'd just like to be aware of the nature of the award.
Going on 12 hours.
...the worm in the apple...isn't there some saying about worms and apples?
When I awoke Mom today, although no harder to awaken than usual, once she was upright she volunteered that she didn't "feel good". Despite my pointed questions, she couldn't identify specifics. It's unusual for my mother to say this, even when all her stats are indicating that she probably shouldn't feel good, so I always take this seriously. I thought that she might revive an hour or so after the one dose of iron she's now allowed daily. I didn't mention anything to her, though, forced myself not to constantly ask her how she felt "now" and tried hard to only obliquely observe her lips and fingernails. She didn't seem any weaker than usual, just, well, not as sprightly. Maybe, I thought, it's all the exercise in which she indulged yesterday, which usually happens on a trip to see the doctor. She's a proud woman who likes to show off for an audience and she certainly did that yesterday. Maybe it's the low going through. We got a little rain while we bathed her. Maybe, too, I speculated, breakfast, a little conversation and reading will revive her.
Maybe they did, but by the time she was beginning to think of napping I was noticing that her lips were whitening and her breathing was a touch harder than it has been in the last week or so since her cold has abated.
I'd been telling myself, in response to her complaint, that I'd give the new course of treatment 48 hours and not call the doctor about increasing her iron supplements until tomorrow afternoon, but I was on the phone at 1530, briefly describing my observations and asking if I could "please" increase her iron dosage. I suggested "two to three a day". He settled on two.
I understand what he's doing and I told him this, although I didn't go into detail. My belief is that he's attempting to determine how well erythropoetin will work, whether she'll need iron supplements during the treatment, if so, what type, and, probably, whether she'll continue to need occasional transfusions. I want him to know that I have taken a position of trust in his methodology...and, after this morning, also want him to know that he can rely on my observations and reports while Mom's in this trial period.
I also discussed a possible life-style change with my mother at breakfast: Perhaps we need to cut back on her night sleep by a couple of hours and make sure she gets three full meals a day, all of which will include some sort of iron source. Her response? A generous, "That's an idea, I never thought of that." This, of course, is dependent on her energy reviving a little so that I can actually get her up and she isn't so tired that she dissolves into rag-doll status, which presents an alternate danger, since it doesn't keep her from moving but it keeps her from moving safely.
"Secretly", I'm terrified that I will somehow offend yet another doctor and jeopardize yet another of my mother's treatment avenues. I've no indication of this and I want to look on the bright side, I want to continue to "float", but...
...well, let me put it this way. I just broke my vow not to touch research for a while and spent some moments googling erythropoetin therapy. Luckily, there's nothing new that I hadn't read some time ago. I've never been sure that she's a good candidate for this therapy, since her native erythropoetin levels have never been below normal and still aren't. My guess is that her hematologist probably feels the same way. She doesn't have cancer, at least not as far as we know and not at the moment, so there appears to be no danger of the epo shots stimulating a tumor. Her renal function is better than usual for typical instances of epo use due to renal failure, but it's not great, so, theoretically, she qualifies as an "other uses" candidate. And, anyway, who knows, it could be that her anemia is due to a multiplicity of chronic diseases, as well as some occult internal bleeding from time to time that will never be found. Seems, as well, it's not uncommon for epo therapy to be combined with iron supplementation, often intravenous iron boosters. I even read something about instances of alternating epo therapy with transfusions.
Then, after about a half hour of this, I burst into tears. Can't tell you why...maybe it's partly exhaustion, maybe it's partly confusion, maybe it's just that I'm alone in all the consideration this involves and that's beginning to get to me. Could even be disappointment, despite my determination to have no expectations.
I still don't sense that The Grim Reaper is calling Mom. Neither does she, but she may never hear the call...she may simply be overwhelmed by the scythe. It isn't her nature to anticipate death, hers or anyone else's. Thus, if she isn't anticipating death, neither will I on her behalf.
But, you know, maybe we'll have a more felicitous evening. At least we started the book, and she's thrilled with it but could only endure listening to the first chapter before she opted for a nap. Her initial up time wasn't any shorter than usual today...that's a good sign.
So. An iron pill in the morning and one at night. Maybe I'll awaken her two hours earlier tomorrow and we'll begin that experiment, as well. Tonight we're having burgers, full of iron. I've got a can of spinach left, too, and she loves canned spinach with vinegar, although, contrary to popular belief, vegetable sources of iron aren't nearly as useful to the body as meat. Funny, one of the minor clinicians at the doctor's office, yesterday, waylaid and lectured me about how feeding Mom lots of spinach would rid her of the need for iron supplements. I nodded and made a mental note to try to avoid this woman during future visits.
Another day, another apple, another worm...
This morning I'm welcoming back...
...Patty McNally Doherty of the Unforgettable Fund, which, I suppose, is a way of welcoming back myself, since she's been away because I've been away. Although my journals have been far from popular or noticeable on the web, I've managed to attract the most thoughtful, informed and literate of readers/commenters. Patty's comments are often like a sub-journal.
Lately she's left two, both of which I want to mention.
I was reminded of the third to last paragraph in the first comment after watching the PBS special Caring for Your Parents late last night. It wasn't boring, by the way, although I'm not sure if my mother would agree with me, were she to view it. It contained some moments that grabbed me, and a bit of reality (although, not particularly bravely represented reality) which I appreciated. As the program closed, though, I was left with a familiar feeling of having been treated to yet another whitewashing of caregiving for elderly parents. Yes, the program mentioned a divorce brought about by extremely difficult caregiving circumstances. Yes it touched on the inherent difficulties of the lives of caregivers. Yes, it attempted to address solutions to problems, although, frankly, the solutions were the same as I'd heard before and all centered around vague talk of "plans" and "communication". Yes, it featured the liberal mention of "transformative moments", spoken so often that I began to take offense at the obvious buzz word quality of the phrase. Jesus, people, is is possible for us to do anything without attaching a sound byte to it????
Here's Patty's paragraph, repeated for ease of access:
Writing, especially the blogs of Mike, Bert, Deb, Mona and you, scratch the all-is-well patina, and they scratch it hard enough, to give a real and accurate view of just what it's like under the surface. All is not well. All is as far from well as all can be.Here's the thing. I didn't see the caregivers and care recipients of whom I know in the program: I didn't see Bert's family and her dad or Deb and her mom or Patty's family and her dad or Mike's family and their parents or Karma's family and her mom and grandmother, Mona's family and her dad or Rosa, her husband and her mother or Paula's family and her parents or Bailey and her mom, Annes' family and her Mom, nor did I see any of the contributors to the caregiving area of Daily Strength (profound apologies to anyone I've missed). I didn't see My Chandler Friend and her Dad; nor our former yard man, who is my mother's age and took care of his wife during her final months; nor our next door neighbor who cared for his wife as she declined out of life. I didn't see my dear Prescott friend who, with her husband, took care of her mother during her final years and continues to regale me with stories of that time. I didn't see my mom and me.
I saw peripheral bits and pieces of this and that family and situation; but, somehow, I wasn't able to glimpse any cores. Readers, Patty's comment reminds me to mention, if you want the scoop on caregiving for anyone, elderly or otherwise, you need to pay attention to caregivers through their own filters. If you're a caregiver, you need to tell your story in your own way, through your personal medium. The one point the program did make, once, is that this isn't something that won't affect you. If it hasn't yet, it will. If you're doing it and you have a moment, here and there, talk honestly to someone else about it. If you aren't doing it yet, listen with an open mind and heart to someone who is. If it's not a part of your present world, I guarantee you, it's on your horizon in some form.
I'm mentioning Patty's second comment because it underlines the dilemma we, in this country, at least, and I suspect on a wider global scale, face in regard to Medicine. My mother, too, as is true of Patty's brother, is alive today in part because of modern medicine. Although her strong will and spirit have something to do with it, as does her connection to me, and although the miracles medicine has produced on her behalf are much smaller than those which have seen to it that Patty's brother is alive and definitely kicking, without those small miracles my mother would be a memory. I like, though, how Patty characterizes the phase of floating that seizes those of us who care for those who survive due to Medicine's embrace (and, I suspect, probably also seizes those who are in that embrace). Sometimes, you just have to let go and float, maybe because you're too tired to continue the ruthless monitoring that seems necessary, maybe because the monitoring no longer makes sense...maybe because the monitoring seems to be getting in the way of the ability to allow someone to simply life her or his life. That's why we ALL need to be involved in what Medicine is doing to our loved ones and ourselves. At any moment, some of us are going to have to float. This increases the importance of those of us who have the energy to stroke, when we do.
Mom was down, then up, then down again, last night. She's comfortably abed, at the moment, but I'll be awakening her soon. The days previous to yesterday's shot were fraught with my obsessive observations of the hourly variance in the color of her lips and fingernails based on her ingestion of iron pills. I was pleasantly surprised to discover, last night and this morning, that they have taken on a uniform and what I hope to be a fairly permanent color. I'm trying to rein in my expectations. I'm not altogether successful. It's been a long time, though, since I've been the victim of disappointment due to expectations not realized. I've become easy when it comes to quickly adjusting expectations.
In the meantime, we still have a book to crack today, a couple of promising movies to watch and I've placed the paint kits in plain view to see if they excite any possibilities.
Whatever. I'm ready for anything, even the least of possibilities.
EPO Shots Day 1 - Treatment 1
It was a quick appointment, today, at the hematologist's. Mom was no sooner seated in the waiting room than she was called back to what I expect will become our "regular" exam room; same one into which we were ushered exactly a week ago. The office manager handed me copies of all the tests but one which hasn't yet arrived, the Serum Protein Electrophoresis. The hematologist stepped in within moments, smiled, said, "She'll be getting a shot today," left to collect a loaded syringe, returned, Mom looked unpleasantly surprised even though I'd prepped her for this, I leaned into her good ear and reminded her that, with a little luck, these shots would clear her anemia or, at least, raise her hemoglobin to the point where she'd have more energy and wouldn't feel the need to sleep 14 - 16 hours a day, the doctor mentioned that he'd prefer to give the shots in her belly then raised her shirt, lowered her pants and administered the shot, Mom winced, although she later claimed it didn't hurt, I asked him if I needed to know anything, needed to look for anything, he smiled and said, "No," then mentioned to cut her iron back to 1 pill per day, I asked if he wanted me to have her blood drawn tomorrow, he said, "No, we'll do that next week," and that was that.
Are you surprised that I didn't insist on my usual question and answer session, asking specifics about possible side effects, etc.; that I didn't load myself up ahead of time with researched queries, that I didn't second question even the two that I asked, that I didn't, in some way, say, "Hey, wait a minute, I need more info!!!" Don't be. I'm tired of information. Tired of research. I may do a little on the net between now and next Wednesday at 1400 when she gets the next of what will apparently be weekly shots; I'm not even sure how many weeks we'll be doing this, and, you know what? I don't care. Then again, maybe I won't any research. Maybe I'll just let it all go, be a physician's fool for awhile and let the pros take care of it. I soooo want, and need, some simplicity. Just for awhile. And, with this treatment, at least, with Mom, considering her current and fairly long standing anemia profile, I don't think it's possible to make mistakes. Trying it certainly isn't a mistake. We'll see what happens.
On the way home I explained to Mom that next week we'd be doing the same, the shots and all. I didn't know, I added, if this is going to be a regular weekly "thing" but I was sure it would continue for a little while.
She wasn't disturbed. She said, "Okay. Why, though?"
"Mom," I said, "I want you to know that I'm happy with the way you are right now. I know you are, too. I'm hoping that the shots will boost your energy, though. That you'll feel good enough to, for instance, want to go on errands with me; want to spend afternoons people watching in the park or the mall; want to supervise me when I do yard work. Maybe suggest things you'd like to do on your own, and we can do them. Maybe we can even get back to painting eggs. How do you feel about that?"
She turned toward me and gave me her glare-over-the-top-of-her-glasses look. "It depends."
I laughed. "Mom, I promise, I'll follow you on this. We'll see how it goes. But, you'll take the lead. If I suggest something and you say 'no', absolutely I'll honor your decision...well, assuming that I don't suspect that the 'no' isn't strictly the habit that your anemia has dictated for awhile, now, and needs to be broken. But, you know, let's take this a day at a time and see what happens. We might be surprised."
"Well, that sounds good, then. Okay. Deal me in."
I laughed at her last sentence. That's a new one. Hmmm..., I wondered. Do the shots work this fast?
When we arrived home Mom was not interested in taking a nap immediately. However, after a bathroom visit and relaxing for about a half-hour in her rocker while watching a repeat episode of Meerkat Manor, her eyelids began to droop. I nudged her and asked if she was ready to nap.
She said, "I think I am ready."
So, she's in bed, now, has been for about an hour. I'm going to let her sleep for awhile, just to see if she arises "early" on her own. If she doesn't, I won't begin to freak for another hour or so.
Just a few more items:
- I missed the Bah-bah Wah-wah special about living to be 150 that apparently played last night. Didn't know about it until this morning. I feel a certain obligation to watch it, considering a recent post, and will, but I read a summary of it and it doesn't sound terribly enlightening. Frankly, I'm not interested in living to be 150, not in this country, anyway, considering the iffy circumstances I'm in regarding things like health care, employability, etc. I barely want to live much beyond my mother. Seems like it would be too damned much of a fight to survive. Not interested. But, I'll check out the program on the net within the next few days. If I don't mention it again, that means I don't consider it worth mentioning.
- Blood test results from 3/27/08 are up, minus one, the Serum Protein Electrophoresis, which was sent out of state. I'll add that when I get it, probably not until next week. What a pleasure not to be chomping at the bit for those numbers, right now!
- There's a program on PBS tonight about families caring for their elders. I've got it set to record on DVR, although I doubt we'll watch it while it's on. I mentioned it to Mom this morning and she said, "Sounds boring." Right now, I agree with her, although I expect my interest will revive. I'll probably watch it later in the week, or perhaps on the weekend, without her. As with the Bah-bah Wah-wah special, if I don't mention it again, it'll be because I don't consider it worth mentioning.
This is strictly unofficial, but...
...as I continue archiving each year of these journals into their separate areas, I'm noticing that it looks as though I hit my posting peak in 2006. Seems I had a lot to say, that year. Not that I didn't have a lot to say in other years. It's a tight race and I'm going strictly by the seat of my pants on this, but it looks like the middle of 2006 was a particularly loquacious period.
I'm not bothered by the severe cut back in my posting of late. As I reflect upon it I note that it's not uncommon for me to feel, now, as though I have nothing to say and the therapy aspect of journaling has diminished for me, mainly, I think, because I'm needing the therapeutic delerium of journaling less and less. That's probably good.
When I was at my posting peak I remember personal concerns that I was repeating myself ad nauseaum. Although I'm not reading posts as I transfer them, unless the comments I'm also transferring tweak something in my memory or a title sounds obscure and I wonder to what the hell it referred, it seems that I did repeat myself, a lot, and probably continue to do so. Hard not to do that when you've published as many words as I have in the last few years. As well, since therapy tends to be repetitive until one "gets it", and this has been my caregiving therapy, well, you know...
Anyway, it occurred to me as I was contemplating the above while moving the most recent weekly archive (I'm in June of 2006, now...that was a prolific month) that, once my mother's death brings this particular series of journals to an end, it might be interesting to go back and survey themes that were repeated in order to determine how much concern particular aspects of caregiving deserved, at least from my perspective, in comparison with others. It might also be instructive to note caregiving aspects about which others have written that I didn't address. I'm a cataloguer at heart. I'll set up catalogues even when they aren't necessary, just for fun.
So, this post is a reminder for me. Of course, if my mother's suspicions hold sway, she and I will continue, just as we are, into immortality and no catalogue will ever be created. We'll see what the gods have to say about that.
Mom awoke last night just as I was heading for bed, at 0200. She was bright eyed, bushy tailed, "I thought we could sit and talk," she said. I tried, but she was distracted by my yawning and finally decided, about 0230, that conversing with someone with one foot in her bed wasn't what she'd imagined. I was really sorry...some of our best times are those serendipitous wee hours when she can't sleep and I thought that this promise might keep me from fading on her. I was wrong. I sent her to bed with a book we received a while ago, though, that I'd planned on us reading aloud but to which we hadn't yet gotten around: Hitty: Her First Hundred Years, the original version. I read it when I was in the fourth grade and have never forgotten it. I've talked about it occasionally, since then. One of the reasons I remember it so well is that soon after I read it, I read JFK's Profiles in Courage. Although I did book reports for school on both and remember enjoying both, I have vivid memories of Hitty and only one about the contents of Profiles in Courage; the sense, which lingers, that politics isn't about how deserving issues are but about how personal they are to each politician. Leave it to a fourth grade girl to understand what is truly important. Finally, a couple of months ago when I was yet again referring to it, Mom said, "I wonder if we can find a copy of that book." We did.
When I checked on my mother this morning, I noticed that she'd completed the first chapter of the book. I was pleased. Generally, she reads what she calls "light" material (detective novels or questionable and colorful historical sagas) before she turns off her light. She usually only progresses a few pages a night, remembers nothing of what she's read and contends that the purpose of this reading is "to put me to sleep," to which I respond, "I'm sure the authors would be highly complimented by your choices." Thus, I'm pleased to note that she found Hitty fascinating enough to want to do a little serious reading. I'm curious to know how much she will retain when she awakens.
We haven't been reading out loud much lately, but that will be changing tonight, as we're receiving a copy, today, of the second in Anne Rice's series of books on Jesus, Christ the Lord: The Road to Cana. Mom wants to reread the first before cracking the binding of the second, to which I'm looking forward, as well, considering the number of Bible and Jesus movies we've been watching, lately. Strange, but, in curious ways I'm finding that companionating one of her life long interests is edifying for me, an agnostic atheist, as well. I may not place belief in gods, but I love that we've created them and love, more, what the stories of these gods say about us as a species. As well, my genealogical sister and I recently discovered that the "German" that my paternal grandfather remembered his parents speaking and reading but carefully refusing to pass to their children was more likely Yiddish. When I was a pre-teen and my interest in religion/spirituality was lit, so was also lit a continuing argument with the stories of Christianity. I reasoned that these stories were not "really" the stories of my ancestors. Knowing this set me on a discovery of ancient, pre-christian Germanic, English and Gallic mythology/spirituality which, of course, also personally applies to me and the pursuit for which I will always be grateful. However, since discovering this purposely obscured ancestoral trail, it's been a pleasure to reconsider everything I've ever learned and wondered about Christianity and Judaism from the perspective that, hmmm..., this information, these beliefs, had personal meaning and consequences for some whose genes and lives led to me. In the case of my mother's ancestors this information led directly to me being born in the USA.
Ah, reconnaissance coughing. I'm surprised. It's an hour and a half shy of what would be her 12 hour night sleep. Should be an interesting day.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson