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 signed up and was accepted into what sounds like an interesting study.
It's called the Family Caregiver Writing Study. I learned about it while I was browsing unfamiliar caregiver sites, something I haven't done for awhile, and stumbled upon the study at the journal of Robert T. DeMarco. The immediately previously link will take you directly to his announcement of the study.
The study is being launched in an attempt to document, through physical evidence, whether caregivers writing about their lives and their particular stresses helps to reduce stress. It will involve strict periods of writing and several measurements of saliva cortisol levels, timed, with the writing, to show whether cortisol levels, which apparently go up and down according to one's stress levels, are affected by writing about one's situation.
After reading all the material online about the study, I contacted the director of the study, Dr. Howard K Butcher, Tuesday. For obvious reasons, with which I'm sure all caregivers can identify, I was intrigued by the possibility of gathering concrete evidence for something that most of us caregivers who journal, either online or privately, believe in our bones: Having an expressive outlet for the caregiving period of our lives helps us endure the strains and stresses peculiar to caregiving.
The reason I contacted Dr. Butcher previous to applying to be a study participant is that I wondered if the fact that I journal about my caregiving situation on my own, frequently and fairly thoroughly, would disqualify me from the study. It occurred to me that, considering the frequency of my journaling, my cortisol levels would already be affected and, since the demands of the study last approximately six weeks, there would be no way that I would stop journaling for the study, so I figured this would disqualify me.
Dr. Butcher, though, was excited that someone who already journals was interested in being a part of the study and curious about what sort of stats journaling caregivers would display. So, I volunteered.
I have sent in my consent form and am awaiting its receipt, at which point I will be emailed with what is referred to as an "ACCESS code" in order to enter the site pertaining to the study, where further information about the study will be disseminated and the writing part of the study will be conducted.
I believe the study is continuing to look for participants, so, if you're interested, check out the link above that is connected to information about the study and how to apply. There is an interesting apologia for and abstract about the study, the first entitled "Emotional Expression as an Intervention to Reduce Alzheimer Disease Family Caregiver Burden", followed immediately by the abstract, on this page, an adjunct to Dr. Butcher's Home Page, as well, that you might want to read.
At this point I rather expect I won't be publishing a blow by blow account of my participation in the study. However, I asked Dr. Butcher to let me know when results of the study are published and keep me in mind as someone who would be interested in reading those results.
One of the reasons I am particularly interested in being a part of the study at this time is that, unlike the previous few years in which I have been embraced by a sense of peace about what Mom and I are doing, for a variety of reasons, some having to do with Mom's anemia and other health issues, some having to do with the business of caregiving, some probably having to do with issues of which I am unaware, I'm at a low point and am experiencing what is, for me, unusual stress. This seems to be a good time to enter such a study. As well, Dr. Butcher mentioned that the writing required of the study is probably significantly different than what I normally do in my journal. This piques my curiosity.
And, what about the Mom? Well, nothing much different than usual on post shot days. It's becoming apparent that the first and second days after her shot are pretty much a wash: The first day is when she experiences physical discomfort; the second is when she is unusually tired. On the third day she perks up and is ready to go; well, if you've been reading me for any length of time, you know what I mean. If you're new, here's a description of a "perky" day:
- I notice, once she is upright, that she is sitting and standing straighter than on bad days.
- She moves with more confidence; sometimes a bit too much confidence. At any rate, I don't constantly have to urge her to "straighten up". Although I always have to do "straighten up" coaching, on the third day she retains a good posture much longer than on a bad day.
- She is easy to work with during bathing and much more likely to participate, i.e., I don't have to direct her through every movement when she washes those parts of her body that I don't wash.
- She is much more likely to participate in animated conversations with me and the cats on the good days.
- She doesn't merely zone out when she's watching something on TV; she initiates conversations about what she's watching and is quick to tell me if she isn't particularly interested in something.
- It takes only 30 - 45 minutes to get her from initial awakening into the bathroom; on bad days it can take an hour or more.
- Her thirst is evident on good days and she is likely to let me know when she's finished a particular liquid and wants more.
- She is more likely to complain about things that bother her on good days...and more likely to be testy if I overstep what she considers to be my caregiving boundaries.
- She actively participates in mutual teasing. For instance, on good days I often tease her that it looks like we can start her marathon training, again. If I accidentally misinterpret and mention this on a bad day, she glowers and ignores me. On a good day she usually reminds me that "the coach" is expected to train right along with the marathon runner.
As a reminder to myself...
...I want to mention that, yesterday evening, Mom had considerable difficulty with her right knee (also her "trick" knee) for a few hours; enough so that she opted for the wheel chair in the living room, even though she insisted on negotiating the two steps into the living room on her own and did so without a problem. It was the straightforward walking that seemed to put it into a tailspin. By bedtime, though, it was fine, so I think, somehow or another, she managed to accidentally maneuver that knee into an untenable position when she was in the bathroom and it took awhile to realign it. While she was standing and securely propped, before she sat is the wheel chair, I had her lift and bend her knee a couple of times, rotate her leg at the hip and swing that leg straight out the the side. None of this worked, at the time. Once she was seated, I'd rearranged the living room so that she was in "rocking chair position" and she was settled, I had her do a series of her sittercises that feature lifting, straightening and rotating the knee. By bed time she was not only able but anxious to walk on her own (with her usual walker and environmental help, of course) to the bathroom and then to bed.
I vaguely remember MCS mentioning something about joints during her erythropoietin (which reminds me that I constantly spell it wrong, reversing the order of the "ie" to "ei") shot dissertation, but I think it was just a question, something like, "Do her joints hurt?" to which I responded, "No," which was true at the time. I need to follow up on that this weekend.
I did a little less anxious research again last night about erhythropoietin. So far the Wikipedia article seems to have the most easily accessible and understandable information and references, but I'm still not satisfied. Seems that not too many people who have used Epo shots for purposes other than dialysis or cancer related anemia are doing much reporting. I did, though, discover an interesting looking forum called NoBlood. I signed up for it, but haven't closely investigated it, yet. It's a little confusing. I typed in "anemia" under the title search and was bombarded with all kinds of postings that may or may not apply to my experience with my mother. It looks, however, like it might also be useful for looking up information regarding transfusions, as well.
As a sidebar, so to speak, I want to bring attention to a couple of comments on my immediately previous post of yesterday. I'm very pleased that a couple of my readers specifically mentioned my observation that dementia does not necessarily mean that one's brain is "lazy"; or, in a better word, inactive. At the time I wrote this I was thinking not only of my mother but of many of the caregiver experiences I've read that describe what seems to be heightened brain activity, particularly in the midst of confusion. Believe me, folks, a confused brain probably indulges in significantly more activity than a lucid brain. Just dealing with the confusion ups the stakes.
As well, Patty McNally Doherty's observations about compassionate response among those with dementia hit target with me. Although I haven't noticed this, in particular, with my mother, she's always actively displayed a removed compassion for "those less fortunate" and this hasn't changed, I did notice it particularly in my grandmother and my maternal aunt. My aunt reacted much like Patty's father right up to the day she died, which was out of character for her pre-dementia self, even though noticing others who seemed to require compassion was not out of character for her. Previous to her dementia, she simply wouldn't react to these "others" in public. However, once dementia took hold, even when she was no longer able to clearly communicate with people, she would approach those whose situations softened her heart and try to bond, sometimes just through touch. My grandmother did the same, although, for her, this stage didn't last very long. She rather quickly progressed into the prison of deep dementia, which tends to block one's environment from one, at least it did in her case.
I think it is well worth noting both of these contingencies as they apply to dementia: normal, even increased brain activity, however confused the activity seems; and an increase of expressed compassion. It is interesting and probably significant to note that even when challenged by the bewilderment of dementia, people's brains will fight, hard, to make their way through confusion and reach out to others in their environment. It is a good thing, really, that we are living in an era where we are having to study the dementia around us so meticulously that we are noticing that "the demented" are not necessarily also "the hopelessly blocked". Perhaps noticing this is helping the rest of us work from "the other side" to increase the success of the efforts of those who are sweating to make it through the confusion and the isolation their dementia is causing them to experience. And, by the way, if you find any of this intriguing, a good source for information on what those who are experiencing dementia and their loved ones are doing to increase the visibility and participation in the world of those with dementia, browse through Mona's journal, The Tangled Neuron. It's loaded not only with possibility but with actuality.
EPO Shots Day 3 - Treatment 3
Mom was raring to go earlier than usual, today, even though I was keeping to our usual Shot Day Schedule, which, on past Shot Days has seemed much too compressed for her. "Why do we have to wait?" she asked. "Let's get in and get it over with."
I called the clinic, figuring that Mom's desire to bump up the timing a little wouldn't be a problem. It wasn't.
She phased in and out on the shots from moment to moment. After I'd reminded her upon awakening that today was Shot Day, she confirmed that she remembered. There were a few times when I mentioned it prior to us leaving for the clinic, though, when she registered surprise. Then, again, at the clinic, when her hematologist approached her with the needled syringe and a smile, asking, "Where do you want it?", Mom, as usual, was startled.
When he swabbed her belly she said, "Tell me when to yell."
As he pierced her with the needle he said, "Yell now."
She didn't, of course, although, as usual, she flinched, but I admired his insistence on honesty and honoring her half humorous, half serious wishes.
On the way home she announced, "I'm hungry. Let's get something to eat."
I reminded her that it was a little too close to breakfast to go out for a full meal, but told her she could have either peanuts or popcorn when we returned home. She chose peanuts. This suddenly increasing hunger is a surprise. I don't know if it's going to last, but it's a good sign. About a week prior to getting her first shot, although her appetite remained adequate, it was dwindling a bit. She also hasn't mentioned anything about dessert for some weeks. Last night, though, she not only remembered dessert, she insisted on it. Luckily, we had some chocolate ice cream in the freezer...a little old but, as Mom said, "That's all right. It'll taste just as good."
She also didn't feel the need to settle in for a nap immediately upon arriving home. Instead, she opted to start another Bette Davis movie. She only made it halfway through, but that's okay, I was too busy to see much of it so we'll watch it again tonight.
When she rose in anticipation of a nap, she clearly had a bit of a time, winced and said, "Oooh! I didn't expect that!"
I asked her if her knees where bothering her.
"No," she said, "it's right here," running her hands along her thighs.
"Ah, well, that's good," I announced. "That means your shot is going to work and stimulating your body to make lots of healthy blood, Mom."
"I don't know about that," she argued.
I took a few moments to explain to her what MCS had told me about where blood cells are manufactured and that these areas sometimes ached when production was stepped up.
She found the information interesting, although I doubt that she'll remember it. "Guess I'd better lay down so they can do their work," she said. Any excuse for a nap, I guess.
At the clinic I also noticed that her observational skills are revving up. I hadn't actually considered that they'd been declining; just that she'd been somewhat mentally lackadaisical, of late (many caregivers will confirm, dementia doesn't necessarily mean one's brain becomes lazy). As we were leaving, though, hunched over her walker and seemingly concentrating on the floor as she was, she apparently studied the habits of a man who was entering as we were leaving. Once we were past the door she leaned toward me conspiratorially and said, "Did you notice that man who just passed us? He had barely three hairs on his head, but when he came inside he stopped, took out a comb and carefully rearranged his three hairs."
I hadn't noticed...I was too busy managing Mom's oxygen to study anyone around us.
Once she was settled in the car she'd forgotten that she'd relayed the observation and repeated it, this time with a sly undercurrent of nastiness and a wicked chuckle.
"Mom," I said, "sometimes you can be mean, you know that?"
She gave me a sidelong glare and said, "Oh, realllly?!?"
So, you know, I am pleased to report, the epo shots seem to be restoring some of her sharpness, in all it's aspects, including it's mean and demented aspects. Truth is, I'm pleased. I hadn't been altogether sure that this stuff was doing much good.
No blood draw today...
...and I think that's okay. A windy, cool low is going through and Mom, as usual, is reacting to it. The last few days have been calm and warm, for this season, anyway, and Mom has responded well, considering everything. I was thinking, last night, since she was up so long, lively and aware, that maybe we'd get through the next few days without her noticing the low, but I was wrong. At any rate, the hematologist isn't concerned about the weekly blood draws and I doubt that her PCP will have a problem with me suspending this week's draw, since I have yet to update him on everything that's been going on in regard to the epo shots. I can't say why...I think about my usual meticulous and timely doctor reporting, scold myself for putting it off the last few weeks, then put it off yet another day. I'm sure he knows that if something was wrong he'd be the first to hear about it.
My mood has been a bit iffy, as well. Stuff outside the usual caregiving stuff has been affecting me and I'm experiencing a very dark outlook on life, lately; so dark that I'm thrilled when my mother is up because she always has a salutary affect on my mood. For the last three weeks or so I've been needing her optimistic attitude. Even when she's "under the weather", which she clearly is today, she's silly and sunny and stalwart and these native characteristics of hers are helping to push back my internal drapes for some hours a day, at least. Who says caregiving is a one way street!?!?
Tomorrow is another epo shot day. I can finally say that I think they are working well for her. For the longest time, from the beginning of January on, before she started seeing the hematologist, I was losing faith in my ability to read her health from her fingernails and lips. I noticed today, though, that both are filling in, nicely, with a striking pink. I wonder, occasionally, how we'll maintain this once the epo series comes to an end, but I'm not anxious about it. I have to say, though, that I'm still not inclined toward my usual assertiveness in seeking out the answers to my questions. Hmmm...I suppose that the "other stuff" is also affecting the way I'm approaching her medical experiences, right now. Oh well. Such is life, yes?
Regarding side effects of erythropoeitin shots:
Now that I'm thinking about it, I should have remembered it from the branded advertisements that ran on TV for awhile when erythropoeitin was a popular booster of red blood cell production for cancer patients,: "mild to moderate bone pain". MCS tweaked my memory...but it took my brain a good 24 hours to suddenly produce the phrase from the ad. As well, she speculated that a drop in energy could probably be expected while the bone marrow was scurrying to produce more red blood cells. What is important to know about this is that it is the long bones, from shoulder to elbow and hip to knee, the ribs and the sternum that are the most lively producers of red blood cells. These are also the most likely to twinge when production is stepped up. For how long? Good question. In the case of regular shots, my mother's experience seems to be a sort of intermittent schedule.
Do I wish Mom's hematologist had mentioned this, rather than answering my question about expectations in this area with a smile and a shake of the head? Well, it would have been nice, but, frankly, I'm so tired of Medicine, as it is these days, that I don't care, anymore. I know. I should. It's funny because, last night, after running through The Conversation segment of the PBS program Caring for Your Parents (I have more to mention, by the way, regarding some of what the various panelist said, but, that can wait, I'm pretty much not inclined, at the moment, toward excitement over The [Caregiving] Literature, right now), I decided to download the caregiving handbook offered in conjunction with the program. I scanned it this morning, especially the medical section. Jesus Ef Christ! First of all, I'll bet there isn't a directive I haven't tried, including attempting to interview prospective physicians before employing them (even though I have Health Care Power of Attorney on behalf of my mother, no physician has ever allowed me to interview them for any reason), multiple times, not always but usually without significant effect on physicians or our relationship with them. More to the point, though, the entire booklet seems to be designed to scare possible avocational caregivers away from even attempting the role. In the meantime, I continue to recall the fairly oft repeated phrase from the program, "you've got to have a plan". People, let me tell you, if I'd bothered to read a handbook like this, or any of the many others, if I'd sat myself down and attempted to design a plan and actually counted on following it, guess what, I would have said, "No way, Mom," when she originally asked me to do this and would have hot-footed myself in the opposite direction. As it is, it's lots harder than I ever imagined, but, without a plan and without prior coaching, I, first, took on the role and, second, have found it a much more flexible and much less onerous role, overall, than any of The Literature would have had me believe. Oh, it's really hard, all right, but it's nowhere near as hard as The Literature can make it sound.
I'm not saying that this stuff is best ignored, certainly it's a good idea to be aware of as much as you can handle, but, you know, read it askew..."through the glass darkly". Don't ever imagine that you must completely recreate yourself in order to fit the role. It is much more likely that you'll be creating the role to fit yourself and your care recipient. My sympathy is not only with all those who do it but all those who refuse it. But, know this: It is a role that invites reimagination, with every caregiver who attempts it and every care recipient who receives it. The role thrives because it is so easily reimaginable. Go ahead, read the books and pamphlets. But, if they scare the hell out of you, throw them aside and turn, instead, to deep thought about the person for whom you are considering caregiving, your interrelationship with them, your relationships with any other people who will be intimately involved in your caregiving adventure, then, write the rules that suit you!
Final sidebar regarding all that great advice about how to control the medical aspect of your care recipient's life: Medicine has lost control of itself in the last decade (or maybe a little more). Believe me, when Medicine can't control itself, you're foolish to think you can control it on behalf of your care recipient, even if that care recipient is yourself. Don't stop trying, but don't expect more than glimmers of success. In this country we've got a looooong row to hoe before Medicine, especially, at this time, Geriatric Medicine [Did you know that the number of Geriatricians is declining rapidly in this country, at the moment, and Geriatric research is at a stalemate?] becomes trustworthy, again (assuming that it was, once).
Hmmm...seems like it might be a good idea for me to go eat some worms, right now, huh.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson