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.
"Just give me a minute!"
I've been in twice with the intention of awakening my mother today: Once at her 12-hour-sleep-mark, 1330, and once just a few minutes ago at 1400. Both times she looked so peacefully involved in sleep, what I hope is a healing sleep, that I decided to give her another half-hour. I think she could use an extra hour, today. It was apparent, last night, when she headed for bed, at my insistence, that she'd been up longer than was probably a good idea, although that was at her insistence. The allure of Touched by an Angel episodes was very strong, yesterday, especially since we'd watched the special features in the first season set, including two short interviews with Martha Williamson which greatly interested Mom. At about 0110, when we'd polished off a third-in-a-row episode and she was clamoring for yet another, I noted that both her eyes were swimming in white, she was leaning severely to her right even in the wheelchair (she spent the evening in the wheelchair, yesterday, to avoid what promised to be a couple of very difficult transfers), she was obviously exhausted and was beginning get "stupid-silly". Mom agreed and, without reluctance, assented to bedding down for the night.
Sometimes I'll give her her head. Sometimes, though, especially when she is displaying symptoms of her child-like desire to remain awake into the wee hours so she doesn't "miss anything" but her body is telling me that staying awake is becoming a push-comes-to-shove procedure for her, I'll insist on having my way with her. When I impinge myself on her schedule, though, I frequently forget my environment and attempt to hurry her along to our agreed upon destination. Thus, she finds it necessary to remind me, voicing the declaration that is the title of this post, that, while she may agree to let me set a particular destination, how long it takes her to get to that destination and what she includes in the journey is entirely up to her. Last night I counted three separate reminders, each louder and more irritated than the last. The third prompted me to conduct an internal assessment after she was securely down for the night.
I was forced to contemplate the way Mom and I approach time in this household versus the way we're told, by our society, to approach time. Our household is much more a How to Be where You Are household, versus a "How to Get Where You Need to Be" household. Although I've enjoyed and fully participated in our relationship with timelessness for a looooong time, I've been particularly aware of it, lately, because the embrace of timelessness around our lives has become tighter and made so many aspects of my part of our journey much easier for me.
We (intra-national) live in one of many "What time is it?" societies, versus living in an "Is it time?" society. Not that the latter doesn't ever come to the fore. Primarily, though, our society views Time as a regimen that gives meaning to our lives, versus Time being a circumstance to which we give meaning by asking, and answering, for ourselves, "Is it time?" Allowing Time to control us has its purposes, many of which are valuable and some of which continue to affect my life, primarily, and my mother's secondarily. Scheduling the management of our household, including our involvement with Hospice, is a major factor in my part of our life and a minor factor in my mother's, since I try schedule everything around her "schedule". Holidays and special days make demands on my mother's adaptability, much to her continued delight. I think, though, that living with an Ancient One highlights disadvantages of allowing Time to be the Controller, rather than controlling Time.
One facet I've noticed about our society's attitudes toward living with Ancient Ones is that we consider it a good thing that caregivers try to keep their care recipients to societally approved schedules and Ancient Ones' schedules be damned. Keeping an Ancient One on a schedule devised for Less Than Ancient Ones is supposed to help keep them oriented and feeling "involved", especially if they are displaying signs of dementia, light or heavy. Otherwise, though, it's a part of the dictum, which is mostly silent but, oh, my, so tidal in its silence it drowns our observations and our better instincts: "Change your life as little as possible to suit your Ancient One's life; your life is the more important of the two (or three or more). You'll have problems if you don't insist that your schedule is the important schedule...and problems make you a less effective caregiver."
Even institutions designed to house Ancient Ones live by the clock. It's not only considered a social necessity, in the lives of the charges as well as the staff, its a monetary necessity. It simply wouldn't be cost effective (at least not in our current economy) to run housing facilities the way Mom and I run our home. Does it do Ancient Ones any harm? We haven't studied this, yet. Does it do the staff harm? If stress is harmful, and it seems that, in overdose, it is, it certainly adds stress to the lives of those whose instincts are toward compassionate caregiving but whose paychecks are based on efficient caregiving. Is is harmful to our society? Well, we're barely in touch with our Ancient Ones because they don't fit into our schedules, thus they don't fit into our lives. Relatively speaking, this is, of course, just the way it is. But, we're at a point where we're beginning to question the wisdom of this monumental disconnect between our "approved" families and our Ancient Ones, who, while we may continue to consider them family, are, somehow, not welcome at our tables unless they are prepped by others while we are prepping the meal and delivered, preferably in a wheelchair, on time.
It's important for me to note, here, that I'm not talking about developing patience. If you have to be patient with someone you're still letting Time tell you what's important and you're not entering into your Ancient One's schedule, nor are you giving that schedule its due. Patience is what you adopt while you're waiting for someone to catch up to you, or, more accurately, your determination of the importance of Time. When you surrender to the importance of the activity and/or the life to which you're attending, Time no longer controls you, you control Time...and patience is no longer required.
How can we moderate the differences between Ancient One Time and Less than Ancient One Time? Truthfully, in this economic period in our existence, if our entire society did it the way I'm doing it our economy would collapse. I know this because my personal economy collapsed long ago.
But, we're aware, now, again, that we're missing people, especially since the number of people we're missing comprises a huge segment of our society, growing every day. We're on the verge of having to question Time's place in our lives. This is good. It's not going to be easy, but it promises to expand our ideas about what a society is and how inclusive it should be; what our obligations are to the most vulnerable members of our society and how we should go about discharging our obligations; what the value of a person is when that person requires a high level of care to survive and thrive.
The clock is ticking. If we're smart, we'll make the most of This Time and work to gather yet another and another of us back into a connected, all-inclusive fold. If we're not, the clock will soon tick off each of our individual descents into social and personal oblivion.
Mom's tiring of being injured.
"I'll sure be glad when this heals," she said. "It's getting old." She hates to be "laid up" even though her life, now, is quite sedentary. I completely sympathize. Even though she doesn't "get around much, anymore", the idea of doing so still flits freely through her mind. Having an injured shoulder puts a damper on desire, which is as important to Mom as doing.
Curiously, I'm not finding the process of nursing her through this injury tiresome. I thought I might. I have before, not always but sometimes. It's nice not to have to deal with my impatience as well as my mother's temporary disability. I have no idea when or how my patience developed, but I'm glad for it.
I ordered a "baby" monitor this morning. After doing my research and calling all the stores I could think of in the area that might carry the brand and model upon which I decided, it was clear that I'd have to get it from out of town. It should arrive early next week. I've been talking about it with Mom. It was a possibility that the Hospice RN suggested might be timely to pursue, now. Yesterday, as it turns out, Mom and I had an episode where she was calling me in the morning and I thought what I heard was Mr. Man warbling at the back Arcadia door, as he often does when he wants me to know he's sighted something interesting. He was at the door, staring into our backyard. I headed down the hall to see what he'd spotted a couple of times but never noticed anything. As it happened, each time I was in the hall, Mom was resting from calling for me. Finally, on the third or fourth trek, she spoke up while I was in the hall right next to her bedroom and all the pieces to the puzzle fell together. I agree with the Hospice RN. It's no longer appropriate for me to assume that I will hear her; and certainly no longer appropriate for me to think that what is actually her voice is Mr. Man.
Mom is excited about the device. She thinks of it as a walkie talkie, which, I guess, it sort of is, only one way. "Can I call you on it?" She asked.
"Yes. All you have to do is speak and I'll hear you. You don't even have to press a button or lean into it or anything. I'll probably even hear you coughing in your sleep, maybe I'll hear you snoring, depending on how sensitive it is, I might even hear you turning in bed."
"I hope I'll hear you when you talk to me. My hearing's not that good, you know [That's the understatement of the year!]"
"I'm not sure that's how it works, Mom. I think it only transmits you, not me."
"Oh. Well, that's a shame. We could get some good conversations going."
I have no doubt.
Anyway, time to awaken the Mom from her nap.
Later, no doubt.
Mom has taken more acetaminophen, today...
...than she's probably taken in a year; even though the total amounts to four "extra strength" (500 mg apiece) tablets. She's refused none of it. Surprisingly, it's rendered her a little rum-dumb (as I note in today's movement post. I think it's not the only factor: She's been very relaxed today, which is good. The woman instinctively knows how to heal herself, so, when she's in physical distress, I follow her lead and try to stay out of her way.
She does not like being ill or injured, though, and made this clear this evening as she was sitting on the edge of her bed preparing to lay down for night sleep. "It's pretty bad," she confided to me, blearily, "when you can't sit, and you can't lay down, and you can't stand..." her voice trailed off.
I listened sympathetically but when she'd finished I laughed lightly. This is, after all, my mother we're talking about. A little sympathy goes a loooooong way with her. A little more and she becomes indignant. "Mom," I said, "I agree. Those circumstances must be awful, but they don't apply to you! You can sit without pain, you can lay down without pain, you can stand without pain, and you can go from position to position without pain. At least, without much pain. Are you telling me you've been lying to me all the times I've asked you if you're in pain, today and you've said no?"
She looked surprised that I would accuse her of lying. "Well, no. Of course not."
"Are you in pain now?"
"Have the pain twinges you've experienced a few times today been unbearable?"
"Looking back over the day, has transferring been difficult?"
She snorted. "No. Not at all."
"Well, I'll tell you, if you ever get to the place where you can't sit and can't stand and can't lay down, we'll deal with it. But, Mom, you're not there yet."
She grinned. Sheepishly, I might add. She chuckled. "Well, you have a point."
She laid down, on her left side, her injured side, which is so much her preferred side that she couldn't get comfortable on her right side last night when we tried that.
"Did that hurt?" I asked.
"Did what hurt?"
"Okay. We're doing good. Don't worry about what may never happen. If it does happen, we'll worry about it then."
An interesting and sweet thing that happened just before the above conversation. She was still in her wheelchair, parked parallel to her bed. I was doing various minor chores around her, the usual before-bed chores: Closing the blinds, rearranging and plumping the pillows, making sure her water glass was full, positioning her tissue box, glasses, water glass and clock so she could see them from her laying-down position, pulling her foot blanket up so her feet won't cool during the night.
Mom said, "Did Mother (I assume she meant her mother) tell you when she'd be coming?"
As always when she says things like this, I wondered if this was an indication that death may be near, but I didn't let on. "No," I said, "as far as I know she hasn't called."
"Well, she told me today that she'd be coming by to take care of us."
"Wow," I said. "I hope she gets here soon! It would be wonderful to have her take care of not only you, but me!"
"Well, that's what I told her. You've had a lot to do, these last few days. You could use a rest."
"Well, thank you for that, Mom! I look forward to her coming!"
"It'll be nice to have the three of us together, again." This reminded me of the few years after Grandpa died before Grandma moved down to Scottsdale to be closer to family, most of whom lived in Scottsdale, when Mom and members of her sister's family would take turns coming up here to Grandma's home on Garden Street to stay with her. When I had days off, here and there, from whatever job I was plying, I'd come up with Mom. The three of us had some memorable visits. Evenings were especially enjoyable. We'd stay up till all hours (my mother came by her night-owlishness honestly) playing South of the Border Canasta and talking and talking and talking.
"Absolutely! I want to do the cooking, though. I've never liked Grandma's cooking, much. Remember that 'Hawaiian Chicken' she made, once, thinking that, being from Guam, our family would especially like it?!?"
Mom chuckled. "Oh yes! I never liked her cooking much, either. I'll keep her busy just before meals so you can cook."
"That's a deal."
"She said she'd be coming soon."
"Well, if she can't make it, we'll do okay. I think we're doing fine, in fact."
"Oh, so do I. It'll be nice to see her again, though. It's been awhile."
"Yeah, it will. There really isn't much to do around here; I've pretty much got it all in hand, although it would certainly be nice to have some help. Maybe we can spend a lot of time visiting."
"That would be good. I'll tell her that."
So, looks like relief is on the way, even though I'm not feeling over taxed. Sounds like Grandma. Just the thought that she'd be here if she could, and she probably is in spirit, keeping in particularly close touch with my phasing mother, who is in the right frame of mind to know she's here, relaxes me.
Think I'll hit the sack early tonight.
I'll tell you, the Universe must be on our side.
Mom's recovering from her fall with her usual speed and elan. There's a detailed, up to the minute report here at the movement journal, if you're interested. She went in for an early nap, of course. The Hospice RN noticed that she was beginning to look like she'd nod off toward the end of his visit. He took vitals and everything looked good. He noted that she was a little "clammy". She was clammy last night, as well, probably from the shock. Otherwise, as he questioned her, and me, about the fall (which she clearly remembered) he noted that she is "feisty" today. She is. This is her typical reaction to illness and injury that gets in her way. Her version of the fall was jaunty, as usual, a sort of "I may be down, but don't make the mistake of counting me out" retelling. As I type that I'm shaking my head and grinning. No wonder, I'm thinking. No wonder.
It'll be a laid back day. I'm not worried about keeping her dosed with acetaminophen. If it affects her hemoglobin, medical care is near. Her vitals are good, though. I'm expecting she'll probably sleep more than usual over the next 48 hours, at least. That's fine. I except that this will help her heal. The Little Girl (one of our cats) remains close to her side, especially in sleep.
The Hospice RN mentioned that this might be a good time to consider a baby monitor. I agree. I'll pick one up tomorrow morning before Mom gets up. Today, I feel better staying close to home at all times, just in case.
All of this reminds me: Last week, when I was shopping for the Champagne Kick Off Dinner, at the deli counter where I selected the meats and cheeses, the server commented on my odd orders (two slices of each choice cut slightly thicker than they're "sandwich cut") and asked the purpose. I told her about the reintroduction of alcohol into my mother's diet and caught her up (she knows me by sight as a regular customer) on my mother, the lung cancer, Hospice assignment, etc. She had a lung cancer story in her family (everyone seems to have one) that she related. As usual, it was a fast, overwhelming, horrible experience, very much the "ugly death" about which the rehab facility doctor warned me. This story featured a tumor that metastasized quickly and visibly, growing up the man's back, wrapping around the esophageal and bronchial tubes and, essentially, strangling and starving the woman's father-in-law. Of all the accounts I've heard over the last three months, only one has had benign elements but still included significant disability. This was the account of my friend's sister's lung cancer: The chemotherapy and radiation for which she opted so debilitated her than her quality of life was significantly decreased for the rest of her life (she died recently). As well, the brain metastasis paralyzed her right side. She did not, however, experience any cancer related pain and died "in peace"; physical peace, at least.
I've been wondering, since the last lung cancer story I heard at the deli, if there are any other "easy", "good" stories of lung cancer, other than my mother's (so far, anyway). I meant to run this by the Hospice RN today but he was backed up in his appointments so I figured I'd wait until next week. Believe me, I am aware that things could change and my mother may very well experience some of the horrors considered lung cancer constants. In the meantime, despite the indications that she is, indeed, declining, to all outward appearances, she continues to beat lung cancer to its punches. I have no idea why. I am curious, though, if the gentler stories of cancer decline and death, if they exist (and, surely, they must, as my mother's appears to be one such story), are drowned by the horror of our reaction to the very word "cancer". As Susan Sontag has noted in Illness as Metaphor (a problematic series of essays, then a book, which I am not recommending but which springs to mind as I write this), cancer is not just a disease, it is (still, even after 30+ years) a powerful, metaphorical critique often level against large, powerful countries (especially the USA) and large, powerful social movements. Compare this with "pneumonia", the deadly appearance of which is often characterized as "a friend to the elderly", especially those who are terminally ill with cancer, as it was used in reference to my mother. We know that death experiences can be easy as well as hard. It isn't that "easy" deaths aren't ever discussed. It's that I have yet to hear anyone discuss an "easy" death as a result of cancer...any kind of cancer. Does cancer always predestine a "hard", "ugly" death? Or is it that, when the word "cancer" comes into play, those are the only deaths we acknowledge?
This isn't a protest, mind you, just curiosity. I guess I am about to find out if Death is always a nasty bully when it takes a cancerous form.
Mom fell tonight on her way into the bathroom for bedtime preparation.
Don't get excited. Everything's fine. I wrote all about it here, at the current movement journal, second bullet. As my mother said, just before settling in for sleep, "Nothing like stirring up a little excitement."
Tomorrow will probably be an interesting challenge, but we're good at negotiating these kinds of things, so I'm not worried. The Hospice RN will be showing up tomorrow, for which I'm grateful, in case it appears, in the morning, that she might have injured herself more than was indicated tonight. She'll probably be sore, and, I imagine she'll assent to more acetaminophen that she usually does. But, we've been through worse, her back injury in 2003, for instance, so I'm sure we'll get through this just fine. Mom's courage remains as high as it was then...and I'm quite a bit more experienced in taking care of her than I was at that time. I will, of course, continue to update her condition, probably mostly at Life after Death Sentencing, but I'll insert plugs here for any pertinent posts.
What an evening!
If you're curious about how Mom is doing...
...you might want to check out the reports for yesterday at Life after Death Sentencing and The Dailies. We're having a bit of a problem, but we're negotiating it with grace. Both the above linked posts fill in the details. I also initiated a Sleep Average report. My intention is to update this every week on Sunday. It is a running average of how much Mom is sleeping. It should give me an idea about whether her sleep quotient is increasing or decreasing and by how much.
I've transferred The Dailies to the new domain address. I broke it into two sections, the immediately previous link which is "Current" (meaning it contains all posts for 2008) and an archive which contains the rest of the posts. I did this because that section is HUGE and I wanted to be able to post and make changes without having to wait five minutes every time I posted. FTP publishing on Blogger is noticeably slower than blogspot publishing. The larger the blog, the slower changes and posts publish.
I'm in the process of correcting internal as well as external links through all the other sections. Once that is done, I'll transfer this main journal and correct internal and external links. I just updated the links section to the right. Everything there should be correct and functioning, as of right now.
Although Mom had a short day, yesterday, I've still got a few minutes until her 12-hour-sleep-mark, assuming I'm able to rouse her at that time. Think I'll do some more link correcting.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson