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 just dreamt of my mother's final bed jacket/pajama set.
Yes, I napped late this afternoon into early this evening. I've had some short nights in a row, lately, I finally decided to make up for the lack of sleep this afternoon. I'm glad I did, because, aside from feeling revved up again, I was treated to this delight of a dream just before awakening.
The pajamas consisted of a loose nylon fuschia pant gathered at the waist, very simple design, and an equally simple baby doll, short sleeved, pale pink top, open down the front and attached with "old" silver buttons, gathered just above the breasts and back. The bed jacket, ahhh, this was beautiful, so beautiful that my mother, in the dream, was excited about donning it. It was of loose but straight cut, a vaguely oriental design with one of those little oriental collars set slightly away from the neck. The outer material was a medium, shimmery lavender silk brocade. The brocaded design was of a tiny stylized bird, so distinctive that I've drawn it so that I remember it. I've scanned it into this post. It's a little rough, since I'm not all that proficient with computer graphic programs, but the general shape is correct; just imagine it smoother and tinier. The bird was embroidered in deep fushia, matching the pants, in syncopated rows throughout the fabric. The jacket was lined with plain lavender satin. It had two generous scoop pockets on either side of the front. It closed only at the top, below the collar, with one "old" silver button, matching those on the pajama top, and a loop fastened between the lining and the top fabric that stretched from the opposite side to the button. It was finished with fushia piping around all outer edges and pale pink piping between the neck and collar, along the inside of the plackets down either side of the front, and along the lower edge of the, hmmm, what do you call that part, ah, yes, the yoke, which stretched around the entire top of the jacket.
In the dream, we were in a slightly different house, although I knew this to be "our" house. MCS & MCBIL were visiting, with the intention of staying through her final days. This particular day was not her final day, though, and she wasn't retiring for the night, she was retiring for a late-in-the-day nap. Her bed was of the hospital variety, lower, though, to the floor than most, but having an attached table that could be swung back and forth at the inhabitant's desire and the mattress affording the ability to raise the head of the bed so the inhabitant could sit up and read, which she'd decided, in the dream, to do, before sleeping. However, when we entered the room I noticed that she'd lowered the head of the bed flat and had made herself a sitting prop by piling "all my favorite things" atop one another over the full first quarter of the bed. She was very pleased with this arrangement. It is impossible for me to enumerate, let along remember, all the articles contained in this closely packed prop, although in the dream each on the top layer was clearly visible and I recognized all that I saw. I agreed with her that this was a splendid prop. I wish I could remember what the items were, mainly because I'd like to know if I dreamed items that I know, in reality, she might consider her "favorite things". Oh well.
Anyway, a few other interesting details: My mother's physical dream self was not actually my mother but a woman I know here in Prescott who's first name is the same as my mother, but who is taller than my mother, more slender and has a generous pixie cut of auburn hair. This is also the woman who, many years ago, gently scolded me, telling me that she did not see an "ancient" woman when she looked at my mother, but an old, proud beauty...or something like that. I should look that up so that I remember her words exactly. It's somewhere in the Histories, I think, or maybe the first archive. Damn, that I don't have the search facility, right now.
When I awoke out of the dream, as well, I had on my mind a phrase from "The Conversation" part of the PBS Caring for Your Parents program: I'm sure I don't remember it accurately, so I'll have to go back and check it, but it was something Gail Sheehy, one of the panel members, said about meaningful final experiences, although she used a better word than "meaningful", and, as well, I don't remember all she said.
Yes, I sew, and rather well, although, if I plan to make this pajama/bed jacket ensemble for my mother I'll have to have the machine recalibrated. I have a sister who sews well, also, and might have the ability to produce the specific type of brocade for which the bed jacket calls. If worse comes to worse, I could probably find a sewing expert who could produce such an outfit. Besides, I'm sure I should run the design by my mother before I produce it. It may not appeal to my mother at all.
I think I invented the dream in part because MCS and I had a telephone conversation today in which she and I reiterated that it is my intention to allow my mother to die at home and not to spend any more time than absolutely necessary in hospital, if any is necessary. MCS absolutely agrees with me on this. So does my mother. She prefers the idea of dying at home to dying in a hospital, "unless that's unavoidable." I hadn't given any afterthought to what my mother's final-final days might be like, so, I guess, my dream mind took over. I'm glad it did. I can imagine that my mother will probably be fairly well bedridden during her final days and I'm sure she'd love a nicely appointed bed outfit.
As I reminder to myself, I also want to record, here, some information MCS passed to me about erythropoeitin therapy and some of the blood test results from the 3/27/08 blood draw.
I think I hear my mother rousing from her nap. She is still awfully tired, today, although now I have a better understanding of why she might be.
Although up of her own accord just before...
...her 12 hour sleep mark, and although, due to us both being riveted to a Bette Davis movie which was new to us, Deception, which kept her up for a more than decent amount of time before her nap, Mom mentioned to me, as she was rising from her walker pre-nap, that she is feeling "weak" today. She's moving okay; not at her least rickety, but not at her most rickety either. No complaints of feeling "achy" all over, as she felt the day after her first Epo shot last week. When she voiced this complaint, I suggested that maybe we ought to increase her sittercise sessions and add some stuff designed to make her a bit more mobile.
As she was still struggling, with my help, through the rise, she glared at me over her glasses and said, "Why should we do that?!?"
"Well, I was just thinking, if you don't like feeling weak..."
"I'm happy the way I am," she insisted, matter of factly, without defensivenes.
"Well, I was just thinking..."
She was, by this time, steadily on her feet, holding only lightly onto my hands. She took control of her right arm and knocked me lightly with her index finger on what she would call my "noggin". "You think too much," she said.
I left the matter at that.
However, I wasn't expecting any reaction that would likely be shot related, this week, so her complaint of weakness, voiced only once, not only surprised me but got me to thinking that it's possible that every day after an erythropoeitin shot is going to be a bit off. Last week I chalked it up to her walkering. She did even more walkering yesterday, though, since "our" usual handicapped space, immediately outside the door of the building, was taken. Her complaint of "weakness" doesn't seem to cover a reaction from the extended walkering. Could be her "achy all over" feeling from last week wasn't a reaction to her walkering, either. Now, of course, I'll be looking for such days, so I need to make a mental note not to relentlessly question her into having one of those days, next week...just keep my senses alert and see how each day-after goes.
I'm making a beefy dinner for her tonight: A reprise of the Hoisin Pot Roast. The aroma of it simmering has, I think, also had something to do with keeping her alert and awake today. We've got another movie queued up for tonight, a movie neither of us knows anything about but the title intrigued both of us: The Assasination of Jesse James by the Coward Robert Ford. I'm not a Brad Pitt fan. I can take him or leave him. I loved his performance in Thelma and Louise but, after that, even in movies I enjoyed for other reasons, like Se7en, he's seems like a one note wonder, simply playing shades of that long ago Thelma and Louise character. But, the title reminds me of the Deadwood series, in which both Mom and I revel, especially the language, so, frankly, when we watch The Assasination of Jesse James by the Coward Robert Ford tonight, we'll be looking for some of that Deadwood atmosphere.
Ah! She's up after only an hour's nap! I'll be back...
EPO Shots Day 2 - Treatment 2
Well, first, I was able to pick up the copy of the Protein Electrophoresis, Serum results. Because of the shortness of the page and the location of the test, the link leads to a point two tests above the actual results; scan down a couple of tests and you'll see it.
Things were jumping today, at the clinic. I was tired so I didn't take certain incidents well immediately after the appointment, although my attitude has changed, this evening, after taking a much needed nap. Mom's hematologist admitted that he didn't get a chance to read my fax, even though I called just previous to faxing my questions along with the CBC I had drawn yesterday. So, I asked the first question, anyway, and he responded, in an even tone, "I told you," no, he hadn't; we've barely talked about Mom's therapy and I am sure he hadn't told me...I remember these things, especially since I take notes and often report them immediately, here; do I have a sign saying, "Stupid Woman: You Can Say Anything" on my forehead!?!?, "after four weeks we'll test her again and see how it's going."
As it turns out, her PCP wants weekly CBC's, anyway, when she's running low, which I told the hematologist, to which he shrugged. I told him, since we'd be running them anyway, I'd be faxing him copies. Then I said, "Well, that takes care of the rest of the questions," which it more or less did, seeing as how he made it clear he was unwilling to discuss Mom's anemia in detail at this point and he was off down the hall to his Chemo Patient room. At the time, once we were settled in the car, I overflowed with frustration which, I'm embarrassed to admit, leaked over the edge as a few tears. I'm better now, recalling how full the waiting room was and how busy everyone was. And, of course, my questions were answered, however abruptly.
One high point: At last week's appointment, when the doctor had more time to display more interest, I mentioned to him that "probably the most important aspect of my mother is her incredible will and spirit." This week, as he knelt before her to administer another shot to her belly, he made eye contact and asked her how she was feeling. Pale as she was, blotchy pink/white as her lips were, she started in surprise and answered in a strong, why-do-you-ask voice, "I'm fine! I feel great!"
I watched the doctor as she answered. His eyes widened, then he grinned. "Well, good. That's the way to feel," he said.
I was more than pleased to realize that he "got it" about my mother.
I was also glad that she displayed yet another aspect of her elderly-demented make-up that is important for doctors to note, as it is a large part of the reason why she isn't a good candidate for tests in which she is required to cooperate: Although I'd been coaching her for the last two days about the previous and upcoming shots, she was clearly shocked when the hematologist approached her with the needle and asked, "Where do you want it?"
She flashed me a look of grave concern.
I clasped her hand and reassured her that this was the reason for the appointment, just like last week, "Remember?"
She turned her consternation back to the doctor. He wiped a spot on her right belly with an alcohol swab and quickly approached her with the needle. Before the tip made contact, she flinched. The doctor's eyebrows shot up.
I laughed. "She reacted," I pointed out, more as an underline than anything else, "before the needle even made contact."
The doctor nodded, barely, kept his eyes on Mom, zeroed in and shot her. "You were preparing yourself," he confirmed.
It was obvious that he took marked note of this, though.
One of the things I love about this doctor, too, is that, even when busy, he is adamant about making much more contact with Mom than with me. She is, after all, the patient. I sense that he makes her feel as though it is she who matters during these visits, not me. This is good, and important, because, well, it is she who matters.
What a day. Just before I awoke my mother, as I was finishing my last post, I realized I was so tired that I decided to take a "cold" pill. If it's not the first time I've done this when a trip isn't involved, it's probably only the second. Today, though, I was so tired that, if it helped, I couldn't tell. It certainly didn't keep me from taking nap when Mom went down for hers. I'm still tired, but at least I'm not downhearted. I expect I'll be hitting the sack before midnight, tonight. I can't remember the last time I retired this early. Mom's already snuggled in for the night. It's 2317 and my eyeballs feel like hot marbles. Although I'm in the middle of a review post on a movie, I don't think I'll finish it tonight. Another day, another attitude...at least that's what I'm hoping.
CBC Blood Draw results...
...are posted for 4/8/08. Her hemoglobin is up, a bit, which is cheerful news, I guess. It's still low, though, at 9.1. With this in mind, considering that we have another EPO Shot appointment this afternoon at 1400, I faxed her hematologist the following questions, along with the test results (which were drawn under her Mesa PCP's standing order, thus, I'm responsible for seeing to it that he gets them):
- Is it reasonable to assume that, on the current dosage of erythropoetin and iron supplements, her hemoglobin will continue to rebound, slowly but surely, or will the current dose most likely simply maintain her where she’s at?
- If it is likely that the current treatment will simply maintain her, should we consider raising her iron supplementation again? She seems to tolerate it well.
- From what I read, my understanding is that erythropoetin therapy is not usually extended indefinitely. If this is true, when the time comes to stop it, what then? Do we put her on increased iron supplementation, hope for the best and continue to monitor her in case she needs another transfusion or another course of erythropoetin?
- Once a course of erythropoetin therapy is finished, can it be administered again in the future, it necessary?
I must say, I'm a bit more relieved than I have been. She just hasn't looked all that good to me and I was afraid that her CBC would come back showing that her hemoglobin, while not having dropped, hadn't risen. I'm glad it has.
I've got some review work to do in regards to her Mesa PCP. I haven't been my usual on-the-spot self, I regret to report, in regard to letting him know what's going on. My anxiety over what has appeared to by my mother's stuck anemia has completely overwhelmed my thoughts to the point where, day by day, I forget to fax her PCP. I haven't even let him know, yet, that she's on EPO therapy. My hope is that her hematologist's office has been faxing him the information, as he asked me to have them do this and I formally requested it, but, well, you never know.
I remain unusually intimidated regarding Medicine. I can't seem to jerk myself back to my usual take-charge, get the goods attitudes. I don't know whether this is good or bad, but I can tell you, it's certainly uncomfortable and doesn't do my overall mood a lick of good. Someone passed me an editorial, the other day, about Those Three vying for their party's nomination for President. It was clearly of the Republican persuasion, but took swipes at everyone regarding health care policies, insisting that "America's health care system, despite it's flaws, is still the best in the world." It was in an email which I now wish I'd kept, in order to pass along the name of the columnist, although I do recall that he publishes through the New York Star; at least, I think that's the name of the paper. I just shook my head. Jesus. Either the guy and his family have never been sick, they are sick but don't know it because their insurance policy doesn't cover adequate health maintenance and he has no idea they don't because he isn't familiar with standard health maintenance medical practices or they've never been sick enough to have his insurance company go nuts and deny coverage. As well, he seems completely oblivious to all the statistics documenting our country's health failures in comparison with a lot of the rest of the world.
Oh well. Almost time to awaken The Mom. It takes a good three hours to get her out the door and headed for the doctor's office. Wish me luck. She was up a couple of times last night (which means I'm dragging) so, despite my frequent reminders that today is an appointment day, she'll probably be her usual resistant self. That's not expectation talking, that's experience.
Afterthought to the immediately previous post...
...before we hit Mom's 12 hour sleep mark:
Something I've learned, gratefully, from all the caregiver stories with which I've become familiar: ...and, when you can no longer do it, you just don't.
Funny thing is, regardless of how long you do it and whether you stop doing it, or stop doing parts of it, before your care recipient stops needing care, there's always someone standing in the wings questioning your motives, hoping to incite a little confusion and guilt about your choice(s). They needn't bother. We caregivers are perfectly capable of feeling guilty and confused on our own.
Why do we take care of the people we love...
...even when what we perceive as their lives threaten to, or actually, overwhelm what we perceive to be our lives?
Following is a piece of script from a House episode which bluntly frames this question:
One of Dr. House's patients is a man who was diagnosed with a brain tumor, causing general paralysis and an electronic wheelchair bound existence, and whose family has been taking care of him. The man attempts suicide by maneuvering himself, in his wheelchair, into the family's pool. At a point immediately previous to Dr. House suspecting that the man's paralysis is from another cause, a conversation ensues between Dr. House and the woman's husband about her caregiving for her husband. The conversation is as follows:What I like about this conversation is that it includes the internal Devil's Advocate no caregiver can escape and the problem, itself, why do this, is not resolved. Probably, by now, billions, if not trillions and more, words have been written, by and about caregivers, attempting to answer this question. As with human relationships, there is no easy resolution and, as well, perhaps at least as many eccentric reasons as there are caregivers.
Woman: So he won't have any pain?
Dr. House: Eventually.
Woman: Thank you.
Dr. House: Everything else will be the same.
Woman: Well, you took away his pain and that, that changes a lot.
Dr. House: Why don't you put him in some sort of facility? Some place without a pool.
Woman: Yeah. I could dump him there, except, he's my husband. He's my son's father.
Dr. House: Right. Kids need a dad. Someone to play catch with, talk about girls.
Woman: Mark's learned that you don't have to abandon someone just because...
Dr. House: ...get a dog.
Woman: I'm taking care of him for the same reason you helped us.
Dr. House: Somebody shot you and you hallucinated?
Woman: I have a responsibility.
Dr. House: So he's just an anchor weighing you and your family down. Sapping your energy. Wasting your life. That's the meaning you take from this.
Woman: I want to take care of him.
Dr. House: You enjoy this.
Woman: I can't abandon him.
Dr. House: So you don't want to take care of him. Taking care of him doesn't fulfill you, make you happy. But, not taking care of him would make you miserable.
I remember, in a fairly raunchy mood, once having a conversation with another dedicated caregiver in which we were discussing the emotional immaturity and irresponsibility of a third caregiver. The question of "Why?" was addressed between us. After much wrangling, our best resolution was: "You just do it."
Not that this is the definitive answer, just as the scripted conversation above, while simultaneously enlightening and troubling, isn't the definitive discussion. But, it reminded me that, when I'm feeling up to it and have the time, it never hurts to question my motives, pose the nasty, as well as the nice assumptions and review, for a moment, why I continue to do this, before I'm again engulfed in the doings of it.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson