Saturday, August 12, 2006
I'm writing my way out of a "tragic" funk.
Not too long ago I noticed that a webring has been developed for caregivers to those with Alzheimer's who are keeping journals and websites devoted to their experiences and the lives of their care recipients, Memory Lane Webring. Most of the journals I regularly visit have joined. I've been vacillating, although I haven't taken the time to figure out why; I've been internally and automatically explaining my lag by telling myself, once again, that "I'm not a joiner." Today, finally, I decided to confront my reluctance and attempt to understand why I'm keeping my journals out of this well intentioned and doubtless extremely helpful webring. I revisited the webring's home base, reread it's apologia, and found myself focusing on the word "tragic". This word seems to be the pivot around which my conundrum swirls. I have trouble applying this word to my and my mother's experiences.
As a reality check, I decided to search my own journals to see if I had ever used the words "tragic" or "tragedy" to describe my mother, me, or our experiences. I discovered that the words (most often "tragic", nine times in this main journal) do appear but never in describing my mother's or my lives, separate or combined. I wasn't surprised. In fact, typically, when I use the word "tragic" and it's derivative "tragedy", I am speaking out against the overwhelming tendency to approach old age and dementia from this perspective.
On the heels of this activity I recalled my recent post in which I reacted to someone else's sense of the tragedy of taking care of one's elderly mother. I was reminded that the fulcrum sentence defining my despair is the one in which I realize that the essay into which the searcher clicked offers no support to those ensconsed, either personally or by way of caregiving, in the "tragedy" of dementia or, old age, for that matter.
As you know, I now keep up with a few blogs devoted to caring for parents who've been diagnosed with Alzheimer's. I often comment in their journals and correspond privately with the authors. I try, very hard, to empathize with their experiences and sometimes even try to offer consolation and support but, the truth is, the reason this is hard for me is that my and my mother's experiences are a horrible match for theirs. I know this. I've addressed this in this main journal. More than once. I've addressed this in comments to these blogs and privately to some of the correspondents. I've never apologized for this, it would be silly for me to do this, but I'm always, always aware that, fundamentally, I have nothing to say that would help them in any way.
I acknowledge the tragedies of their parents' lives and the sense of tragedy that comes from being closely involved in those lives. I am so aware of the perception of tragedy surrounding Alzheimer's and caring for those with Alzheimer's, other forms of dementia and advanced old age that I hurt every time I read an entry describing the difficulties and despair of their lives.
And yet, and yet, and yet...my mother's and my journey isn't there. Not even on the fringes. My despair, when I experience it in connection with caring for my mother, comes from the exhaustion of going it alone, not the tragedy of her condition, or mine. My agitation comes from the thoughtlessness of the professional community (and, sometimes, the lay community) surrounding pursuits of living with dementia and old age and caring for someone who lives with these conditions. Most of my despair or agitation, I repeat, most of it comes neither from my mother's life nor my perception of her life as I journey with her, nor my perception of what it's like to care for her. When I become agitated with her, say, repetitiveness, her inability to understand something that I'd like her to understand, or any of the other myriad behaviors, hers or mine, that have the power to overwhelm me, my ability to adjust my attitude eventually kicks in and she and I quickly turn the corner onto a more felicitous street.
It's not that I don't want to support the lives of those who perceive themselves to be living with the twin tragedies of Alzheimer's and old age. It's that I realize I'm not in a position to do this. Call it my mother's unusually easy old age despite her challenges, call it my peculiar mindset, call it what you will. I'm not there. I'm here. Despite all my and my correspondents' valiant attempts to forge paths between their experiences and mine, I sense that those paths are merely sympathetic, not empathetic, and, as such, are tenuous, at best, and not at all nurturing. This isn't an apology, it's just a fact.
I'm establishing a link to Memory Lane Webring in my Honorable Caregiver Blogs link section, because of my awareness of the many who live with the "tragedy" (those are quotes of respect, by the way, from someone who isn't familiar with the nature of the tragedy but flinches when she sees others dealing with it) of Alzheimer's and my desire to direct those who are searching for appropriate support. I can't bring myself to join, though. Maybe, someday, the tragedy will visit me. It hasn't, yet. Thus, I feel, the glory goes to those embroiled in the battle. I objectively acknowledge that I am not on the battlefield and I am not one of those soldiers. I salute all who are, though, with all my heart and soul.
As a reality check, I decided to search my own journals to see if I had ever used the words "tragic" or "tragedy" to describe my mother, me, or our experiences. I discovered that the words (most often "tragic", nine times in this main journal) do appear but never in describing my mother's or my lives, separate or combined. I wasn't surprised. In fact, typically, when I use the word "tragic" and it's derivative "tragedy", I am speaking out against the overwhelming tendency to approach old age and dementia from this perspective.
On the heels of this activity I recalled my recent post in which I reacted to someone else's sense of the tragedy of taking care of one's elderly mother. I was reminded that the fulcrum sentence defining my despair is the one in which I realize that the essay into which the searcher clicked offers no support to those ensconsed, either personally or by way of caregiving, in the "tragedy" of dementia or, old age, for that matter.
As you know, I now keep up with a few blogs devoted to caring for parents who've been diagnosed with Alzheimer's. I often comment in their journals and correspond privately with the authors. I try, very hard, to empathize with their experiences and sometimes even try to offer consolation and support but, the truth is, the reason this is hard for me is that my and my mother's experiences are a horrible match for theirs. I know this. I've addressed this in this main journal. More than once. I've addressed this in comments to these blogs and privately to some of the correspondents. I've never apologized for this, it would be silly for me to do this, but I'm always, always aware that, fundamentally, I have nothing to say that would help them in any way.
I acknowledge the tragedies of their parents' lives and the sense of tragedy that comes from being closely involved in those lives. I am so aware of the perception of tragedy surrounding Alzheimer's and caring for those with Alzheimer's, other forms of dementia and advanced old age that I hurt every time I read an entry describing the difficulties and despair of their lives.
And yet, and yet, and yet...my mother's and my journey isn't there. Not even on the fringes. My despair, when I experience it in connection with caring for my mother, comes from the exhaustion of going it alone, not the tragedy of her condition, or mine. My agitation comes from the thoughtlessness of the professional community (and, sometimes, the lay community) surrounding pursuits of living with dementia and old age and caring for someone who lives with these conditions. Most of my despair or agitation, I repeat, most of it comes neither from my mother's life nor my perception of her life as I journey with her, nor my perception of what it's like to care for her. When I become agitated with her, say, repetitiveness, her inability to understand something that I'd like her to understand, or any of the other myriad behaviors, hers or mine, that have the power to overwhelm me, my ability to adjust my attitude eventually kicks in and she and I quickly turn the corner onto a more felicitous street.
It's not that I don't want to support the lives of those who perceive themselves to be living with the twin tragedies of Alzheimer's and old age. It's that I realize I'm not in a position to do this. Call it my mother's unusually easy old age despite her challenges, call it my peculiar mindset, call it what you will. I'm not there. I'm here. Despite all my and my correspondents' valiant attempts to forge paths between their experiences and mine, I sense that those paths are merely sympathetic, not empathetic, and, as such, are tenuous, at best, and not at all nurturing. This isn't an apology, it's just a fact.
I'm establishing a link to Memory Lane Webring in my Honorable Caregiver Blogs link section, because of my awareness of the many who live with the "tragedy" (those are quotes of respect, by the way, from someone who isn't familiar with the nature of the tragedy but flinches when she sees others dealing with it) of Alzheimer's and my desire to direct those who are searching for appropriate support. I can't bring myself to join, though. Maybe, someday, the tragedy will visit me. It hasn't, yet. Thus, I feel, the glory goes to those embroiled in the battle. I objectively acknowledge that I am not on the battlefield and I am not one of those soldiers. I salute all who are, though, with all my heart and soul.
Friday, August 11, 2006
I decided to e PCParade...
...regarding my review and the creation of an alternate logo for advertising my participation in the carnival. As those of you who have stuck with me for awhile know, when I send correspondence to people about issues mentioned in these journals I rarely receive much more than an auto-acknowledgment. Lo and behold, to the PCParade's credit, I received a real, live response from a real, live person who was the host of the parade episode to which I submitted, as well as the originator of the PCParade carnival! Since the response addressed the concerns I voiced in my review, I asked for permission to pass these responses on to my readers and received it.
I'm using 1500 as my mother's 12-hour sleep mark, today, and I'm closing in so, you know...
...later.
- The host is not a physician, but a medical-consumer/client whose life is packed with medical treatment experiences.
- The low ratio of medical consumers to medical providers on the web was what prompted the host to write the blurb to my submission to which I took exception. I continue to believe that SND, the physician in question, deserved my detailed, scathing letter but I also agree with the host that, in most cases, calm, constructive criticism will usually, at this time in Medicine's development, go further to justify the case of the patient-consumer than verbal blood-letting. What is important is that medical clients speak up and try to do this in a way that will foster careful consideration rather than defensive strutting.
- The host mentioned that the all-over-the-map selection of submissions is occurring because both the carnival and the patient-consumer movement are finding their legs. The host believes that the wide acceptance latitude will allow for a forum that encourages as much participation as possible from as many medical clients as possible. I tend to agree with him. As I said in my response, "I think you've been wise in allowing a lot of latitude. I have fresh memories of my own intimidation at the necessity of facing medicine on my mother's behalf; I resisted it for some time and initially dreaded every instance when I realized it was necessary. It occurs to me that lay people have to get used to the idea of simply speaking before they gain enough confidence to speak to the point."
- The host liked my logo design.
I'm using 1500 as my mother's 12-hour sleep mark, today, and I'm closing in so, you know...
...later.
Ahhh...days like this...
...when I can't write for thinking and I can't think for doing. Sweet. Another late night for Mom, although it rained all day until 1600, yessss, so what was meant to be a 1400 arising (12 hour mark) became a very slow 1430 arising. I didn't make it to Costco, and didn't care. I decided to hunt and sort today...a lovely day for this. The urge struck me a few days ago, when I was rummaging through the boxes in my closet looking for a 3.5 floppy (Remember those?) of really old essays. It was such a hassle that I made a vow to begin Box Inspection "soon". Today turned out to be soon enough.
The mess in the living room, once Mom made it out here, intrigued her. We had a great time going through stuff we forgot we have.
When she asked, I told her, "This, Mom, is the beginning of all the boxed stuff in our closets that you've been suggesting we just dump without examination, since we can't remember what's in the boxes."
"Well," she said, "I certainly don't want to get rid of this...or this...oh, and I've been looking for this (although she hasn't, literally, she probably has, in her head)...remember when [her dead sister] gave me this? Oh my, and this! We could've used this not too long ago..."
"I know. That's been packed away since the flood."
"Oh, my goodness! That was ages ago (a little over six years ago)!"
"Yeah, so I guess we got along all right without it, huh."
A sly grin. "But, we won't be able to get along without it now."
There goes Dr. Thomas' theory that The Ancient lose their materialistic urges. Perhaps they simply lose the energy to go through their stuff, unless they have a child handy to do the work and leave the fun of ownership to them.
As I retime this post, Mom just finished a bathroom run. "I haven't been to sleep yet," she said.
"I guess that means I should start counting down 12 hours now."
"Oh. At least."
I'm peering down the hall, now. Her bedroom light is on. I wonder what's going on...she's sitting on her bed, staring into her closet at those boxes (the ones we prowled through, today, are from my closet).
"You aren't planning on going through those, are you?" I asked. "I don't want you trying to get those boxes down without my help."
"No...I won't do that."
"I was planning on going to bed, but if you want to get back up, that's okay. I think I've still got a little life in me."
"Well," she said, "I don't have much left in me. I think I'll read a little more. That'll settle me down."
"Okay. I'm going to bed soon, though, it's been a long day for me, so, if you want to stay up, you'd better head out to the living room soon."
"Nooo...I'm tired, too."
"Okay, Mom. Night, night, again." I kiss her again.
"Not nap, nap?" This is a reverse of our little nap "joke", where I tell her "Nap, nap"...
...she says, wistfully, "Not night, night?"...
...and I tell her, "Nope, nap, nap, not night, night,"...
...and she sighs dramatically and says, "Well, okay, only nap, nap, if you insist,"...
It's 0303 now. Her light's still on. I'm heading in, in part because I'm ready and in part to make sure that she doesn't drag her day out any longer than I can handle, tonight.
Later.
Her light went out at 0315.
Much later, I guess.
The mess in the living room, once Mom made it out here, intrigued her. We had a great time going through stuff we forgot we have.
When she asked, I told her, "This, Mom, is the beginning of all the boxed stuff in our closets that you've been suggesting we just dump without examination, since we can't remember what's in the boxes."
"Well," she said, "I certainly don't want to get rid of this...or this...oh, and I've been looking for this (although she hasn't, literally, she probably has, in her head)...remember when [her dead sister] gave me this? Oh my, and this! We could've used this not too long ago..."
"I know. That's been packed away since the flood."
"Oh, my goodness! That was ages ago (a little over six years ago)!"
"Yeah, so I guess we got along all right without it, huh."
A sly grin. "But, we won't be able to get along without it now."
There goes Dr. Thomas' theory that The Ancient lose their materialistic urges. Perhaps they simply lose the energy to go through their stuff, unless they have a child handy to do the work and leave the fun of ownership to them.
As I retime this post, Mom just finished a bathroom run. "I haven't been to sleep yet," she said.
"I guess that means I should start counting down 12 hours now."
"Oh. At least."
I'm peering down the hall, now. Her bedroom light is on. I wonder what's going on...she's sitting on her bed, staring into her closet at those boxes (the ones we prowled through, today, are from my closet).
"You aren't planning on going through those, are you?" I asked. "I don't want you trying to get those boxes down without my help."
"No...I won't do that."
"I was planning on going to bed, but if you want to get back up, that's okay. I think I've still got a little life in me."
"Well," she said, "I don't have much left in me. I think I'll read a little more. That'll settle me down."
"Okay. I'm going to bed soon, though, it's been a long day for me, so, if you want to stay up, you'd better head out to the living room soon."
"Nooo...I'm tired, too."
"Okay, Mom. Night, night, again." I kiss her again.
"Not nap, nap?" This is a reverse of our little nap "joke", where I tell her "Nap, nap"...
...she says, wistfully, "Not night, night?"...
...and I tell her, "Nope, nap, nap, not night, night,"...
...and she sighs dramatically and says, "Well, okay, only nap, nap, if you insist,"...
It's 0303 now. Her light's still on. I'm heading in, in part because I'm ready and in part to make sure that she doesn't drag her day out any longer than I can handle, tonight.
Later.
Her light went out at 0315.
Much later, I guess.
Thursday, August 10, 2006
Oh, forgot to mention...
...I changed the title up there to match my calling cards, in case anyone wonders why.
Later.
Later.
Well, damn, what an interesting day it's been!
You already know about Mom's truncated naps. Despite this, she remained up until just about a half hour ago, going strong. Last night she finally finished the thank-you note to MFS, so that went out today. I wasn't going to read it, but she asked me to check it to see if it was legible. A couple of curious things appeared in the note, but I'm going to give it a couple of days before I blurt them here. The note, is, after all, a personal correspondence to MFS and I don't want to profane the sacred before it's received (although, as you know, I have no problem profaning the sacred once objectives have been achieved).
We didn't read aloud today, nor did she play Brain Age, nor did we play any games, but, somehow, we remained engaged and we both had a good day. This evening we polished off four more episodes of Northern Exposure, 4th Season, the last of which was an episode called The Big Feast, which centered around a lavish dinner hosted by the local fat cat, Maurice Minnifield, for all the residents of the area. My mother was riveted to the screen. I must have paused the episode a million times so we could discuss, at her prompting, the preparations and the event. When the episode was over, I should have predicted what came next: "We'll definitely have to have Christmas here this year. Invite everyone."
I'm still feeling pretty good about this idea. I think, though, what might be best is if we take everyone who decides to show for dinner at the buffet at the Prescott Resort. I've heard, from both friends and strangers, that their Christmas buffet is to die for. Of course, they don't have much competition. We attended "the other one" some years ago and it left a lot to be desired. But, you know, at least I won't have to cook and everyone can enjoy themselves.
NOTE TO MYSELF: A couple of things in What Are Old People For? continue to haunt me. I'm mentioning it here because my intention is to get back to these things and discuss them here. Oh, and I want to mention, Mom and I finally put the reading aloud of this book aside. I think she became impatient with it, as she often does with books that speculate more than cite. She, too, is overtly practical, apparently much more so than Dr. Thomas.
We're running low on Costco supplies so I've got a run to make in the morning. Mom nixed the possibility of her accompanying me before she retired, so I'd better hit the sack if I plan to get that done before she awakens tomorrow, although I don't expect that will be hard, considering when she retired, tonight, and tomorrow's weather is predicted to be very similar to today's; lucky me! Mom just groaned at that possibility.
Later.
We didn't read aloud today, nor did she play Brain Age, nor did we play any games, but, somehow, we remained engaged and we both had a good day. This evening we polished off four more episodes of Northern Exposure, 4th Season, the last of which was an episode called The Big Feast, which centered around a lavish dinner hosted by the local fat cat, Maurice Minnifield, for all the residents of the area. My mother was riveted to the screen. I must have paused the episode a million times so we could discuss, at her prompting, the preparations and the event. When the episode was over, I should have predicted what came next: "We'll definitely have to have Christmas here this year. Invite everyone."
I'm still feeling pretty good about this idea. I think, though, what might be best is if we take everyone who decides to show for dinner at the buffet at the Prescott Resort. I've heard, from both friends and strangers, that their Christmas buffet is to die for. Of course, they don't have much competition. We attended "the other one" some years ago and it left a lot to be desired. But, you know, at least I won't have to cook and everyone can enjoy themselves.
NOTE TO MYSELF: A couple of things in What Are Old People For? continue to haunt me. I'm mentioning it here because my intention is to get back to these things and discuss them here. Oh, and I want to mention, Mom and I finally put the reading aloud of this book aside. I think she became impatient with it, as she often does with books that speculate more than cite. She, too, is overtly practical, apparently much more so than Dr. Thomas.
We're running low on Costco supplies so I've got a run to make in the morning. Mom nixed the possibility of her accompanying me before she retired, so I'd better hit the sack if I plan to get that done before she awakens tomorrow, although I don't expect that will be hard, considering when she retired, tonight, and tomorrow's weather is predicted to be very similar to today's; lucky me! Mom just groaned at that possibility.
Later.
Wednesday, August 9, 2006
Although I tend toward not being a "joiner"...
...I decided to submit a post to Patient-Consumer Parade, since a fair amount of what I write in these journals is to their point: "Why..." as patient-consumers "...must we be 'patient'". Considering that well over a year ago I played with the dual meanings of "patient" in these journals and, as well, about year ago wrote an initial version, over at Medicine in the Hot Seat in the essay section, of one of PCParade's clarion calls, I decided, aha, this carnival was meant for me. I'll submit some posts. First, of course, the "Medicine in the Hot Seat" essay.
Which was accepted and published in their 5th carnival. When I finally noticed the publication last night I was taken a little aback at the blurb for my submission. You can read it by clicking on the immediately previous link and scrolling down the the "bronze medal" post. The host doesn't seem to know the difference between "angst-ridden" and 'empowered', and also, apparently, took some offense at my criticism of the particular physican who provoked the post and physicians, in general, appealing to readers to be "kind" to doctors. I couldn't help but wonder if the host was a physician.
PCParade is sponsored by Med Market Magazine, a mysterious web presence whose main thrust seems to be the busy and confusing Instahealth. As far as PCParade is concerned, I'm not a fan of its grading structure. It's impossible to tell what individual readers are going to consider significant and, adding to the silliness of the grading aspect, the parade's hosts seem to have consistent trouble separating to-the-point submissions from from off-the-point submissions, which makes me wonder about ulterior purpose. When I decided to search for off-site information about the parade, I discovered that I'm not the only one whose noticed this. When I read through the parade a couple of weeks ago, though, I found more than a few posts interesting and informative. After an initial mini-flurry, the carnival seems to be lagging. I notice that my own submission has generated no unusual traffic over at my essays section. Commenting on the parade editions has quickly dropped to nothing.
Nonetheless, as any (non)patient-consumer worth her salt knows, throwing one's hands helplessly in the air isn't a strategy. One must reach for the reins, feel for the slightest bit of slack, then apply pressure to the effort of controlling the horse (unless and until the horse dies, of course). Thus, regardless of what the Fates have in store for PCParade, since I frequently journalize to the defined (although not necessarily followed, at the moment) point of PCParade, as long as its out there I'm going to submit appropriate posts and hope for the best.
I also decided to rev up Graphic Converter and devise my own logo to "advertise" my participation in the PCParade because the sidebar display offered by Blog Carnival doesn't fit with my simple, clean, word oriented presentation. If you scroll down through my links section on the right, you'll see my neat, appropriate little creation. The logo is linked to the PCP home page.
Today is not only cloudy and humid but cool and rainy. Mom's been so funny. It's one of those perfect sleep days for her, so I've let her go to it, but she doesn't need any more sleep than she's already gotten so she's spent the day heading in for naps then returning to the living room 15 minutes later complaining that she's not tired. She's done this three times, so far. Currently, she's watching the news and talking about "trying another nap". I'm just letting her work it out. At the very least, she's getting more exercise than usual!
So, you know...
...later.
Which was accepted and published in their 5th carnival. When I finally noticed the publication last night I was taken a little aback at the blurb for my submission. You can read it by clicking on the immediately previous link and scrolling down the the "bronze medal" post. The host doesn't seem to know the difference between "angst-ridden" and 'empowered', and also, apparently, took some offense at my criticism of the particular physican who provoked the post and physicians, in general, appealing to readers to be "kind" to doctors. I couldn't help but wonder if the host was a physician.
PCParade is sponsored by Med Market Magazine, a mysterious web presence whose main thrust seems to be the busy and confusing Instahealth. As far as PCParade is concerned, I'm not a fan of its grading structure. It's impossible to tell what individual readers are going to consider significant and, adding to the silliness of the grading aspect, the parade's hosts seem to have consistent trouble separating to-the-point submissions from from off-the-point submissions, which makes me wonder about ulterior purpose. When I decided to search for off-site information about the parade, I discovered that I'm not the only one whose noticed this. When I read through the parade a couple of weeks ago, though, I found more than a few posts interesting and informative. After an initial mini-flurry, the carnival seems to be lagging. I notice that my own submission has generated no unusual traffic over at my essays section. Commenting on the parade editions has quickly dropped to nothing.
Nonetheless, as any (non)patient-consumer worth her salt knows, throwing one's hands helplessly in the air isn't a strategy. One must reach for the reins, feel for the slightest bit of slack, then apply pressure to the effort of controlling the horse (unless and until the horse dies, of course). Thus, regardless of what the Fates have in store for PCParade, since I frequently journalize to the defined (although not necessarily followed, at the moment) point of PCParade, as long as its out there I'm going to submit appropriate posts and hope for the best.
I also decided to rev up Graphic Converter and devise my own logo to "advertise" my participation in the PCParade because the sidebar display offered by Blog Carnival doesn't fit with my simple, clean, word oriented presentation. If you scroll down through my links section on the right, you'll see my neat, appropriate little creation. The logo is linked to the PCP home page.
Today is not only cloudy and humid but cool and rainy. Mom's been so funny. It's one of those perfect sleep days for her, so I've let her go to it, but she doesn't need any more sleep than she's already gotten so she's spent the day heading in for naps then returning to the living room 15 minutes later complaining that she's not tired. She's done this three times, so far. Currently, she's watching the news and talking about "trying another nap". I'm just letting her work it out. At the very least, she's getting more exercise than usual!
So, you know...
...later.
Monday, August 7, 2006
"i hate being the caregiver for my elderly mother"
A couple of times a week I check my Sitemeter stats to see what search terms bring people to my site. There's always an interesting, and often amusing, array of words and phrases listed, some of them laugh out loud funny. I get a lot of visitors, for instance, who are focused on having sex with their mothers. This morning, while scanning the visitors for Essaying the Situation, the phrase in the title of this post showed up as a search phrase typed into Google at around 1500 yesterday, bringing the searcher to This Isn't Your Mother's Caregiving. There was a link (which no longer exists) that delineated how and why the searcher was brought to this particular essay.
I was startled to tears. It's hard to describe what I'm feeling: I guess the best way to put it would be a feeling of compassionate concern and understanding. I wonder what moment in this caregiver's day drove her or him to the internet for some communal relief. I wonder if this moment was one of those fleeting surges that can plague even the most dedicated of caregivers or if it was one of many connected moments from which the caregiver almost never experiences relief. I doubt that the essay to which the searcher was delivered offered much help.
Although my guess is that there are millions of caregivers who experience these moments, however rare or frequent, this is the first time I've noticed someone being directed to one of my sites because they could no longer stand the moment and had to express their frustration, if only by typing the words online, hoping they could join stressed hearts, however distant the connection, with at least one other person in the great maze of humanity who had posted, somewhere, the experience of similar thoughts.
That's why I decided to write this post. Oh caregiver, whomever you are, so deep into the frustration of caregiving that you must put a voice, however muffled, to it in order to experience some relief, know that you are not alone. Your thoughts are neither uncommon, nor "bad thoughts". I think of you often and, if I could, I would embrace you in your pain and rage until you had sobbed and shaken away the daymare and calmed yourself in the knowledge that "this, too, shall pass". Sometimes, this is the only comfort available to caregivers in desperate straits.
Later.
I was startled to tears. It's hard to describe what I'm feeling: I guess the best way to put it would be a feeling of compassionate concern and understanding. I wonder what moment in this caregiver's day drove her or him to the internet for some communal relief. I wonder if this moment was one of those fleeting surges that can plague even the most dedicated of caregivers or if it was one of many connected moments from which the caregiver almost never experiences relief. I doubt that the essay to which the searcher was delivered offered much help.
Although my guess is that there are millions of caregivers who experience these moments, however rare or frequent, this is the first time I've noticed someone being directed to one of my sites because they could no longer stand the moment and had to express their frustration, if only by typing the words online, hoping they could join stressed hearts, however distant the connection, with at least one other person in the great maze of humanity who had posted, somewhere, the experience of similar thoughts.
That's why I decided to write this post. Oh caregiver, whomever you are, so deep into the frustration of caregiving that you must put a voice, however muffled, to it in order to experience some relief, know that you are not alone. Your thoughts are neither uncommon, nor "bad thoughts". I think of you often and, if I could, I would embrace you in your pain and rage until you had sobbed and shaken away the daymare and calmed yourself in the knowledge that "this, too, shall pass". Sometimes, this is the only comfort available to caregivers in desperate straits.
Later.
I've been meaning to mention...
...that over the last week or so we've been catching up on episodes of Northern Exposure, the fourth season. Of course, we've been enjoying them. Mom watches this show with unusually close attention, about which I'd never thought much, before Saturday, when we put a few more episodes under our belt. I happened to notice that she was silently mouthing place names mentioned in the episodes: Three that I can remember: "Sleetmute" (which is mentioned often), "Ilivit" (a mountain peak, I think), "Chickaloon" (the town where Ed's father lives with his family). At first, I thought nothing of it. All the place names in this series sound provocative and are fun to say. I considered briefly that her mouthing of the place names might be akin to the activity of reading aloud.
On Saturday, though, after one of the episodes which seemed to be loaded with place names, as the credits were rolling, Mom said, "I wonder if we'll see MCS, MCBIL and the girls." This "stick", as MCS calls the branches of our family, lived in Alaska for some years, during which Mom visited them. She continues to recall parts of this visit in detail when reminded of it (as she does her trip to England to visit another family "stick" and another visit with them, I'm not sure whether this one took place in Florida or Guantanamo Bay, in which she was treated to a trip on MFexBIL's boat), especially a visit to a glacier. Although I doubt that the scenery in the episodes echoes the actual scenery to which she was treated during her visit, seeing as how the show was not filmed in Alaska, I find it interesting that she considers watching the show akin to watching home movies featuring MCS's family. I'm sure she remembers, when prompted, that MCS's family now all live in Colorado. We've visited them in Colorado a few times in past years. But, because of the spectacular quality of the visit to Alaska, I guess she tends to associate them with this place more than any other in which they've lived (they've lived in several places over the years).
"I don't know, Mom," I said. "We'll have to keep our eyes peeled.
Privately, this reminded me of an incident some decades ago while we were living on Guam. A good friend of mine moved, with her family, "back" to Honolulu, the "home" of many people we knew on Guam. She and I corresponded for awhile. Soon after she moved there, the series Hawaii Five-0 debuted on television. My father loved this show and watched it religiously. If the rest of us weren't doing something else, we'd join him. In letters written to my friend at the time, I would tease her about how I continually looked for her among the extras in the background. On Saturday, after having the relative-locating conversation with Mom, I remembered this and speculated about for whom I'd be looking and in what shows and movies I'd be looking for them when it's my turn to enjoy the mental reorganization of Dementia-Lite. I wondered if there will ever be a show or movie in which Guam, as a setting, played a role. Such a setting would certainly trigger some evocative searches for me, as currently do, for instance, viewings of Sleepless in Seattle, which I continually scour for places I recognize. And who, I considered, would be sitting by my side, deciding to go with the flow when I wondered aloud if I'd catch a glimpse of this or that friend or loved one?
Later.
On Saturday, though, after one of the episodes which seemed to be loaded with place names, as the credits were rolling, Mom said, "I wonder if we'll see MCS, MCBIL and the girls." This "stick", as MCS calls the branches of our family, lived in Alaska for some years, during which Mom visited them. She continues to recall parts of this visit in detail when reminded of it (as she does her trip to England to visit another family "stick" and another visit with them, I'm not sure whether this one took place in Florida or Guantanamo Bay, in which she was treated to a trip on MFexBIL's boat), especially a visit to a glacier. Although I doubt that the scenery in the episodes echoes the actual scenery to which she was treated during her visit, seeing as how the show was not filmed in Alaska, I find it interesting that she considers watching the show akin to watching home movies featuring MCS's family. I'm sure she remembers, when prompted, that MCS's family now all live in Colorado. We've visited them in Colorado a few times in past years. But, because of the spectacular quality of the visit to Alaska, I guess she tends to associate them with this place more than any other in which they've lived (they've lived in several places over the years).
"I don't know, Mom," I said. "We'll have to keep our eyes peeled.
Privately, this reminded me of an incident some decades ago while we were living on Guam. A good friend of mine moved, with her family, "back" to Honolulu, the "home" of many people we knew on Guam. She and I corresponded for awhile. Soon after she moved there, the series Hawaii Five-0 debuted on television. My father loved this show and watched it religiously. If the rest of us weren't doing something else, we'd join him. In letters written to my friend at the time, I would tease her about how I continually looked for her among the extras in the background. On Saturday, after having the relative-locating conversation with Mom, I remembered this and speculated about for whom I'd be looking and in what shows and movies I'd be looking for them when it's my turn to enjoy the mental reorganization of Dementia-Lite. I wondered if there will ever be a show or movie in which Guam, as a setting, played a role. Such a setting would certainly trigger some evocative searches for me, as currently do, for instance, viewings of Sleepless in Seattle, which I continually scour for places I recognize. And who, I considered, would be sitting by my side, deciding to go with the flow when I wondered aloud if I'd catch a glimpse of this or that friend or loved one?
Later.
We watched the movie Cocoon tonight.
It isn't a film we revisit often, but when I was channel surfing for Mom at 2000, we noticed it on one of the cable channels. She thought it might be a pleasant accompaniment to her Just Desserts dinner. I suggested, instead of watching it on TV, since it was on a channel that interspersed the movie with commercials, that we watch our copy of it. She agreed. I was intrigued because I wanted to see what my reaction to the movie would be in the wake of reading What Are Old People For? That's the thing about this book...it upped my sensitivity a good hundred-fold, if not more, to how we commonly degrade old age by our depictions of it:
Anyway, I was surprised. The movie wasn't nearly as blinded by the light of Adulthood as I thought. While, on the one hand, the transient vigor the elders received from the artificial "fountain of youth" was, yes, adulthood, even childhood vigor, I was impressed with the lack of negative dwelling on what it was like to be a normal elder. The portrayal of "Rose" was especially interesting: In one scene she curled in a fetal position during an exercise session; in others she portrayed a demented ramble, wherein she didn't recognize her friends; in yet another she spritely played Mah Jong with female friends who she clearly remembered and was portrayed as being able to sense the meaning of her friends pregnant silences. Although this may seem like a disjointed characterization, this is often how demented and/or infirm Ancienthood works: One day disengaged, the next day engaged.
I also realized how important it is that the elders who decided to leave with the Antareans were told they "wouldn't get any older, wouldn't get sick and wouldn't die", but no one told them they would become "younger"; it was, in fact, implied that they wouldn't. Healthier, yes. Well preserved, yes. But not younger. They were also promised that they would lead "productive lives". The point of view of the book would have found this troublesome, as its take on this issue is that productivity is in the eye of the beholder and the problem, at this point in industrialized society, is that the beholders are exclusively adults.
The two paramount questions the movie poses are:
"I'm not sure," she began. "Would you?"
I really didn't have to think about it. Despite my desire to see the Path of The Ancients rescued from the doldrums to which we have currently assigned it, "Oh, yeah, I'd blow this pop stand. What would hold you back? Would you not want to leave your family, knowing that you probably would never see anyone you know and love again?"
"No," she said, surprising me. "They'd be leaving me anyway."
"Leaving you? You'd be the one leaving."
"I mean they'd die while my adventures were just beginning."
"Oh," I said. "Okay. So, it wouldn't bother you to leave them."
"No."
"Well, what would give you pause, then? What if you were given only 24 hours to make the decision?"
"Would you be going?"
Wow, I thought. That's interesting. Not that she can't remember my recently voiced choice, but that it sounds like my choice would make a difference. "Would it matter whether I went?"
Her face registered surprise. "Well, of course! If you didn't go, I wouldn't."
"Why?" I asked.
"I wouldn't want to leave you alone," she said.
I almost teared up. Almost. Not quite. "Well," I said, "I'd definitely go. I'm ready for something else. New forms of life, being a student and a teacher, learning how to live without the scheduled promise of certain death, feeling good all the time, my bags are packed. Except I guess we wouldn't need bags, would we?"
"That right," she said. "We could leave all these boxes behind."
"An added bonus!"
"Let's do it."
Although we missed the first hour because I didn't realize that it followed on television, we caught the last hour and a half of the sequel. It wasn't nearly as good, or interesting, or, for that matter, realistic. We both, though, noticed one short segment in which one of the characters, who was pregnant, mentioned that she preferred to raise her child without war or poverty.
Mom and I turned to each other simultaneously. "That cinches it," I said. "I'm going, if I get asked."
"I was just thinking the same thing," Mom said.
I can't help but wonder what Dr. Thomas would make of this. After all, choosing to go is a blanket rejection of a fair deal of what comprises old age on this planet at this time. It is a denial of the importance of death. This decision, further, thumbs its nose at many of our cherished spiritual and religious beliefs about the cause of suffering and the beauty of nobly surmounting our circumstances as humans. But, you know, I have a feeling that if all of us were asked, most of us would say, "Take me, I'm yours." This gave me a chance to look askew at Dr. Thomas's propositions regarding the (supposedly nefarious) Power of the Cult of Adulthood. Is it simple societal brainwashing that causes us to yearn for more than death to this life, or is it the enchantment of being alive that imbues most of us with the desire to live indefinitely vigorous, engaged, peaceful lives?
During the scene wherein Ben explains to his grandson the dynamics of the "trip" he and his wife are going to take, it occurred to me that the movie is an allegory for death, even as it overtly examines the possibility of an indefinitely long life.
I think it's also important to note that Antareans, according to the movie, can and do die, under unusual circumstances, and Walter never says they can't. He simply says that, previous to losing his two crew mates, he'd never experienced the death of anyone close to him. I'd not taken note of this in previous viewings. I think this is important, and was definitely smart to include in the movie, because this is a system of beginnings and endings. We may choose to see these as rebirths, evolutions, whatever, but even while it appears that existence is ongoing, it also appears that it continues because of the beginnings and endings, not in spite of them.
Nevertheless, it seems that Mom and I have made our pact. The next time the Antareans visit we'll be bidding you all good-bye.
Later.
- By insisting that an Ancient vitality is possible that's exactly the same as adult vitality and we are failures if we aren't able to maintain adult vitality as Ancients;
- by considering common Ancient vitality as a tragic decline from the summit of adulthood;
- and by glorifying only those few Ancients who, through sturdy genetics, are the human equivalent of the Energizer Bunny.
Anyway, I was surprised. The movie wasn't nearly as blinded by the light of Adulthood as I thought. While, on the one hand, the transient vigor the elders received from the artificial "fountain of youth" was, yes, adulthood, even childhood vigor, I was impressed with the lack of negative dwelling on what it was like to be a normal elder. The portrayal of "Rose" was especially interesting: In one scene she curled in a fetal position during an exercise session; in others she portrayed a demented ramble, wherein she didn't recognize her friends; in yet another she spritely played Mah Jong with female friends who she clearly remembered and was portrayed as being able to sense the meaning of her friends pregnant silences. Although this may seem like a disjointed characterization, this is often how demented and/or infirm Ancienthood works: One day disengaged, the next day engaged.
I also realized how important it is that the elders who decided to leave with the Antareans were told they "wouldn't get any older, wouldn't get sick and wouldn't die", but no one told them they would become "younger"; it was, in fact, implied that they wouldn't. Healthier, yes. Well preserved, yes. But not younger. They were also promised that they would lead "productive lives". The point of view of the book would have found this troublesome, as its take on this issue is that productivity is in the eye of the beholder and the problem, at this point in industrialized society, is that the beholders are exclusively adults.
The two paramount questions the movie poses are:
- Would you go with the Antareans if you were asked?
- Is it be wise to "cheat Nature"?
"I'm not sure," she began. "Would you?"
I really didn't have to think about it. Despite my desire to see the Path of The Ancients rescued from the doldrums to which we have currently assigned it, "Oh, yeah, I'd blow this pop stand. What would hold you back? Would you not want to leave your family, knowing that you probably would never see anyone you know and love again?"
"No," she said, surprising me. "They'd be leaving me anyway."
"Leaving you? You'd be the one leaving."
"I mean they'd die while my adventures were just beginning."
"Oh," I said. "Okay. So, it wouldn't bother you to leave them."
"No."
"Well, what would give you pause, then? What if you were given only 24 hours to make the decision?"
"Would you be going?"
Wow, I thought. That's interesting. Not that she can't remember my recently voiced choice, but that it sounds like my choice would make a difference. "Would it matter whether I went?"
Her face registered surprise. "Well, of course! If you didn't go, I wouldn't."
"Why?" I asked.
"I wouldn't want to leave you alone," she said.
I almost teared up. Almost. Not quite. "Well," I said, "I'd definitely go. I'm ready for something else. New forms of life, being a student and a teacher, learning how to live without the scheduled promise of certain death, feeling good all the time, my bags are packed. Except I guess we wouldn't need bags, would we?"
"That right," she said. "We could leave all these boxes behind."
"An added bonus!"
"Let's do it."
Although we missed the first hour because I didn't realize that it followed on television, we caught the last hour and a half of the sequel. It wasn't nearly as good, or interesting, or, for that matter, realistic. We both, though, noticed one short segment in which one of the characters, who was pregnant, mentioned that she preferred to raise her child without war or poverty.
Mom and I turned to each other simultaneously. "That cinches it," I said. "I'm going, if I get asked."
"I was just thinking the same thing," Mom said.
I can't help but wonder what Dr. Thomas would make of this. After all, choosing to go is a blanket rejection of a fair deal of what comprises old age on this planet at this time. It is a denial of the importance of death. This decision, further, thumbs its nose at many of our cherished spiritual and religious beliefs about the cause of suffering and the beauty of nobly surmounting our circumstances as humans. But, you know, I have a feeling that if all of us were asked, most of us would say, "Take me, I'm yours." This gave me a chance to look askew at Dr. Thomas's propositions regarding the (supposedly nefarious) Power of the Cult of Adulthood. Is it simple societal brainwashing that causes us to yearn for more than death to this life, or is it the enchantment of being alive that imbues most of us with the desire to live indefinitely vigorous, engaged, peaceful lives?
During the scene wherein Ben explains to his grandson the dynamics of the "trip" he and his wife are going to take, it occurred to me that the movie is an allegory for death, even as it overtly examines the possibility of an indefinitely long life.
I think it's also important to note that Antareans, according to the movie, can and do die, under unusual circumstances, and Walter never says they can't. He simply says that, previous to losing his two crew mates, he'd never experienced the death of anyone close to him. I'd not taken note of this in previous viewings. I think this is important, and was definitely smart to include in the movie, because this is a system of beginnings and endings. We may choose to see these as rebirths, evolutions, whatever, but even while it appears that existence is ongoing, it also appears that it continues because of the beginnings and endings, not in spite of them.
Nevertheless, it seems that Mom and I have made our pact. The next time the Antareans visit we'll be bidding you all good-bye.
Later.
