Friday, March 17, 2006
Ho. Well. Where to begin?
How about some quick review? Yes, I'm still having "cold seizures", so I went back on drugs today. I've been keeping up with The Dailies pretty well and mentioning my over-all physical status in there occasionally, so if you've been keeping up on those, you know how I feel. My Caregiver Burnout Status? Shaky, at best.
The big development is that MPS called this weekend to announce that hers and MPNC's spring break started and their plan was that they'd arrive here Thursday night or Friday morning and stay until Monday. I had already looked up their spring break on the web in anticipation of a call, hoping that warning myself in advance would give me some time to work myself into visitor mode. It didn't. The call went badly. First, I outright refused the visit. Then I suggested she and her family take Mom for the time she would have visited here to give me a break. When she mentioned that she'd talk to her MPBIL about it, I don't know, it very well could have been my perception but there was something in her voice, something about the pauses, and suddenly, my exhaustion and anger took hold and I was off and running. Somehow I first turned the conversation into a "No Nursing Home!" litany, then I talked her and myself out of allowing her to decide whether they'd take on Mom, then I began to rant about how tired I was, how bad I felt, how much I needed a break, how I would consider it if they'd spend the nights in a motel, which they can't afford, that morphed into an agitated defense of my position on nursing homes and my annoyance with "the literature" of caregiving and, whoa, it was pretty bad. Somehow, though, she and I ended up laughing, about something, I'm not sure what, and, at her request, I promised to consider a one nighter. We concluded the call with a promise that we'd talk again "Tuesday."
That night I had what at that time seemed like a brilliant idea: Invite them up for a one-nighter with the stipulation that I would put her through a sort of caregiver bootcamp, as described in the immediately previous link. Essentially, I'd have her do everything I do, exactly as I do it, explaining it all to her, talking to her about the history and necessity of everything and adding in little snippets of background pertinent to why I wasn't hiring others to do these things. Sounded like a wonderful idea as I was drifting off to sleep. I realized, at that time, that I'd have to prepare some supplemental reading for her, which is what the aforementioned link is.
Once I got involved in creating the supplemental reading the next day, I realized how exhausting the whole process was going to be for me, how I already felt both emotionally and physically challenged and I simply wasn't up to even this. In addition, I couldn't stop thinking about something she'd said when, after ranting about the lack of help and the need for a break, my absolute disgust with the idea of putting Mom in a nursing home to allow for a few days of "respite" (a word I am truly beginning to hate) for me, and my experience and how I was sure that, in fact, it wouldn't be respite at all, I'd simply be doing, yet again, what I did when Mom was in the SNF before, making sure she didn't come home dehydrated, bowel impacted, hopped up on unnecessary insulin, with dry, irritated skin, in a near insane voice, triggered by her silence at my long outburst, I asked her if she believed me.
"I believe that this is your perception," she said, very, very carefully.
This, you see, is the one sister who has never read any of my online material about taking care of Mom. She knows only verbal snippets, here and there, of the many challenges I've faced and the history of my decisions about how to handle those challenges. At one point in the conversation she questioned a very snide remark I made about the possible organizers by of the NFCA by asking me if I'd actually checked on this. I was taken aback that she, first, didn't understand that I was ranting about this but also that she was completely unaware of how much research I have done and continue to do on everything that touches mine and my mother's life, despite the fact that in order to conduct such research I have to put off other things. Essentially, I felt as though she was saying, "Hey, you're not an expert, watch what you say."
The thing is, I am an expert. I'm an expert both by virtue of my experience with my mother and by virtue of my research on the subject. But, she would have no way of knowing this because she doesn't read my online account of Mom's and my journey and we talk so infrequently that, when we do, there is very little time to devote to me recounting, with any complexity, Mom's and my adventures.
So, finally, on Monday, I decided that I would charge her with the following "visit" and informed her of my decision on Tuesday: I asked her to use the time she and MPNC would have visited with us up here to read the journals and really get to know Mom and me and our situation. When I talked to her I started her off with a list of terms to search and essays to read. The following day I FedExed her a further apologia with yet another list of posts to read and terms to search within the journals. Then, I emailed her with another phrase to search. Some of these search terms and essays were as follows:
Part of the additional letter I FedExed her is below:
I should mention, I also bluntly told MPS when I talked to her Tuesday evening that part of "my" problem was my lingering cold, my continuing experience of severe caregiver burnout and, not least of all, my anticipation of yet another rare (this season) weekend of rain and now, thus, not wanting to spoil my possible enjoyment of that weekend with "an invasion". Yep, that's the term I used.
So. The post immediately below this, which is linked above toward the beginning of this post, is the supplemental material I devised had I decided I was up to managing a bootcamp visit. I wasn't, but, you know, as I read through it I thought it would be valuable to publish it, anyway. It's the first time I've ever recounted, in detail, most of what I do in a normal day (that doesn't include errands, doctor or lab visits, attempts to get Mom "out and moving", etc.). I think it's important to include it in these journals.
Maybe, someday, I'll put one or more of my sisters through such a bootcamp. Maybe not. In the meantime, the idea certainly has merit and maybe someone can use the following post as a template for launching a bootcamp for extended family members of their own.
One more thing I wanted to mention to my "audience"; during the prickly phone call that preceded my decisions about "the visit", I mentioned to MPS that when "all this" began we should have worked it so that all four of us were directly involved in Mom's care sequentially, much like brainhell's comment on a long ago post. I also said that, at this point, it's probably too late to do this. It probably is, for several reasons, two of the most important being that continuity of medical care and direction would be severely compromised and Mom may be a bit too easily confused, now, to handle traveling from home to home four times a year, since we all live long distances from one another. An additional truth is that, when I began this journey with Mom, four pairs of hands and four houses were not only not necessary but would have been onerous, considering the distance involved. When her health went through its initial deterioration in the fall of 2000 everything happened quickly and needed to be addressed with such concerted force that dividing her year into four places and four different approaches would surely have been a very stupid move and would probably have had less than felicitous consequences for her health and her need to remain in a stable environment. I don't know; I suppose, under the right circumstances, this sort of arrangement could work but, frankly, from my experience with my mother, I actually can't see any time at which it would have worked for us. What would have worked, though, is if, after the health crises were over, my sisters would have learned the objectives I've set for her health and her life, learned the routines and the modes of thought that make these possible and learned how to host her successfully for a week here and a week there, maybe even a month here and a month there. Maybe that's still possible. Maybe not. I have ominous visions, now, of her spending time with one of my sisters, having some sort of health crisis, ending up in the hospital under an unfamiliar doctor's care and the doctor being directed by daughters and sons-in-law who aren't practiced in aggressively managing her health care; whereupon, Mom ends up with scopes in every last hole of her body, on medications that are clearly inappropriate, while everyone stands around and says, "Well, that's what the doctor recommended." Of course, I could always drop my "respite" and fly to the problem and take over management, which past medical misadventures inform me would be a series of, first, having to fight doctors and other medical professionals into accepting my understanding and management, then having to be there constantly to make sure they didn't take advantage of my absence. Frankly, those possibilities are easier for me to contemplate managing on familiar ground and I don't see any reason, being her "main manager", why I shouldn't insist that she remain in medical arenas and with doctors and hospitals who know me, even though they shudder when they see me coming.
Oh, and I want to mention two more things for you to search out, MPS, are you "listening"? Search: "medical advocate". If you scroll through the posts that come up you'll find one in which I published a review of information I sent to a company who is organizing a subsidiary to provide medical advocates. The information I sent delineates what I, as a caregiver who is a medical advocate, would want in a hired medical advocate. As well: Search: "My Directive to the Hospital" and read the entire post. See? I really am not merely a reactionary. I'm an experienced, knowledgeable participant in society's (minimal, at this time) efforts to improve caregiving on all fronts. While it's true that I am often outrageous in order to be an agitant, it's also true that I am not simply standing on the sidelines sighing and weeping.
...life continues...
...later.
The big development is that MPS called this weekend to announce that hers and MPNC's spring break started and their plan was that they'd arrive here Thursday night or Friday morning and stay until Monday. I had already looked up their spring break on the web in anticipation of a call, hoping that warning myself in advance would give me some time to work myself into visitor mode. It didn't. The call went badly. First, I outright refused the visit. Then I suggested she and her family take Mom for the time she would have visited here to give me a break. When she mentioned that she'd talk to her MPBIL about it, I don't know, it very well could have been my perception but there was something in her voice, something about the pauses, and suddenly, my exhaustion and anger took hold and I was off and running. Somehow I first turned the conversation into a "No Nursing Home!" litany, then I talked her and myself out of allowing her to decide whether they'd take on Mom, then I began to rant about how tired I was, how bad I felt, how much I needed a break, how I would consider it if they'd spend the nights in a motel, which they can't afford, that morphed into an agitated defense of my position on nursing homes and my annoyance with "the literature" of caregiving and, whoa, it was pretty bad. Somehow, though, she and I ended up laughing, about something, I'm not sure what, and, at her request, I promised to consider a one nighter. We concluded the call with a promise that we'd talk again "Tuesday."
That night I had what at that time seemed like a brilliant idea: Invite them up for a one-nighter with the stipulation that I would put her through a sort of caregiver bootcamp, as described in the immediately previous link. Essentially, I'd have her do everything I do, exactly as I do it, explaining it all to her, talking to her about the history and necessity of everything and adding in little snippets of background pertinent to why I wasn't hiring others to do these things. Sounded like a wonderful idea as I was drifting off to sleep. I realized, at that time, that I'd have to prepare some supplemental reading for her, which is what the aforementioned link is.
Once I got involved in creating the supplemental reading the next day, I realized how exhausting the whole process was going to be for me, how I already felt both emotionally and physically challenged and I simply wasn't up to even this. In addition, I couldn't stop thinking about something she'd said when, after ranting about the lack of help and the need for a break, my absolute disgust with the idea of putting Mom in a nursing home to allow for a few days of "respite" (a word I am truly beginning to hate) for me, and my experience and how I was sure that, in fact, it wouldn't be respite at all, I'd simply be doing, yet again, what I did when Mom was in the SNF before, making sure she didn't come home dehydrated, bowel impacted, hopped up on unnecessary insulin, with dry, irritated skin, in a near insane voice, triggered by her silence at my long outburst, I asked her if she believed me.
"I believe that this is your perception," she said, very, very carefully.
This, you see, is the one sister who has never read any of my online material about taking care of Mom. She knows only verbal snippets, here and there, of the many challenges I've faced and the history of my decisions about how to handle those challenges. At one point in the conversation she questioned a very snide remark I made about the possible organizers by of the NFCA by asking me if I'd actually checked on this. I was taken aback that she, first, didn't understand that I was ranting about this but also that she was completely unaware of how much research I have done and continue to do on everything that touches mine and my mother's life, despite the fact that in order to conduct such research I have to put off other things. Essentially, I felt as though she was saying, "Hey, you're not an expert, watch what you say."
The thing is, I am an expert. I'm an expert both by virtue of my experience with my mother and by virtue of my research on the subject. But, she would have no way of knowing this because she doesn't read my online account of Mom's and my journey and we talk so infrequently that, when we do, there is very little time to devote to me recounting, with any complexity, Mom's and my adventures.
So, finally, on Monday, I decided that I would charge her with the following "visit" and informed her of my decision on Tuesday: I asked her to use the time she and MPNC would have visited with us up here to read the journals and really get to know Mom and me and our situation. When I talked to her I started her off with a list of terms to search and essays to read. The following day I FedExed her a further apologia with yet another list of posts to read and terms to search within the journals. Then, I emailed her with another phrase to search. Some of these search terms and essays were as follows:
- search phrase: Dead Zone;
- search words: "dementia", "Dementia-Lite", "demented";
- search phrase: freedom of thought
- search word: research;
- search phrase: non-alternative medical professionals
- search acronym: PCP
- search word: book
- search phrase: health review
- The 3/30/05 post entitled During one of my less-than-good days a few weeks ago...
- Posts immediately following the 11/1/05 and 2/3/05 health reviews
- posts: All the NFCA posts;
- essay: Guilt Trip;
- essay: Love and All That Shit
- essay: Medicine in the Hot Seat;
- essay: Physician in the Hotseat;
- essay: This Isn't Your Mother's Caregiving
Part of the additional letter I FedExed her is below:
When I talked to you about visiting previous to Tuesday's phone call...[I realized] part of the fault has been mine; that I actually told each of my sisters, some time ago, that they didn't need to read my journals and probably wouldn't want to. I'm also the one who famously said, to everyone, several times, "We can work around you; we're the flexible ones." Well, I was wrong in both of those statements. In essence, by saying both of these things I inadvertently made sure that Mom's and my life and lives would automatically be trivialized. I'm not sure why I did this. I think it has something to do with my embarrassment over the amount of material [in the journals] and in not wanting to make it look as though I consider my life more important than anyone else's. The weird thing is, however ridiculous and stupid my purpose, I accomplished it. Here I am, caregiver extraordinaire, assumed to be (because I said I was) existing at everyone else's pleasure and with no one, absolutely no one, I can depend on to spot me because, well, because, silently or aloud, we all agreed that only one person in our family should be doing this and what I'm doing isn't important enough to keep up on...that I'm in a holding pattern.So, you may be asking, why am I publishing all the above mess, including my decision on the "visit" and part of the personal letter I sent to MPS? Well, you've heard it before: I know I'm not the only caregiver having to deal with recalcitrant extended family. I'm not the only caregiver who's made mistakes in dealing with family. I'm not the only caregiver who, with good intentions, actually screwed myself when it comes to soliciting help from extended family. I know, from experience, that it doesn't help when a professional site dedicated to supporting caregivers uses oblique, polite phrases like "the challenges of caregiving", "the stress of caregiving" and "the spiritual hardships of caregiving". These "challenges", these "stresses", these "hardships" need to be delineated, in extensive, dirty detail, in order for any discussion to actually be valuable to a caregiver and for caregivers to feel less alone and find the inner strength necessary to best all of these situations. It truly does not help to have someone say, "I know what you're going through." It truly does help when someone recounts, in detail, a problem and tells you either how it bested them, how they bested it, and/or what they're doing now, specifically, to deal with it, including whether they're simply ignoring it and letting the problem slide for awhile.
I'm not sorry I'm doing what I'm doing, MPS, but I am sorry that I ever let Mom's and my extraordinary journey become an afterthought to everyone else's lives. Stupid, stupid move. Well, intense caregiver burnout has made me realize that I can't afford to do this, anymore. I don't actually expect anyone to spot me, anymore. I really do believe it's too late, because I've become so thorough at this that everyone is afraid to take care of Mom. Actually, I don't consider that my fault. I've always been thorough, about everything. But, you know, the truth is, I probably wouldn't trust anyone in the family to take care of Mom for me for awhile, anymore, and, you know why? No one really knows what I do, why I do it, and the reason no one knows this is because no one reads the journals. I "warned" everyone away from them but, you know what, if I knew one of my sisters was writing extensively online about her life, even if she humbly told me I didn't have to read it, I'd be all over it. I do, in fact, on a fairly regular basis, search out [all my sister's] names online just to see if maybe someone is doing this. Of course, chances are such writing would be under an assumed name. I can't imagine anyone else in our family besides me writing about themselves online under their real name because, well, as far as I know, no one else was born with the drive to live inside out. But, hope springs eternal...
...
MPS, you need to understand, I'm not just marking time, here, until Mom dies. I've never been doing that, while I've been with Mom or since I was born. I never will be doing that. Everyone treats me as though I am and that's unfortunate because, you know, that's caused everyone, including you, to allow yourselves to not see that I am a different woman than I was 12 years ago when I started this, that I have a perspective on caregiving that should be respected, not only by each of you but by the entire world, including the arenas of professional caregiving and medicine; that I'm not a lightweight; I'm not simply a reactionary. I know what I'm talking about, I think and read and research deeply about all this, as well as making sure I remain acutely aware of my own experience. And, finally, I'm the only one who really knows Mom anymore and can approach her with the informed dignity and respect she deserves from everyone. But, you know, it doesn't have to be this way. Everything, everything that could allow all my sisters to be able to approach Mom this way is, you got it, online, readily available, always updated, extremely complete and fully searchable. Time for me to put my best foot forward and demand that both Mom and me are acknowledged for who each of us has been, who each of us now is and the possibility that exists in each of us. It's only coincidence that you happen to be the first in my path.
I should mention, I also bluntly told MPS when I talked to her Tuesday evening that part of "my" problem was my lingering cold, my continuing experience of severe caregiver burnout and, not least of all, my anticipation of yet another rare (this season) weekend of rain and now, thus, not wanting to spoil my possible enjoyment of that weekend with "an invasion". Yep, that's the term I used.
So. The post immediately below this, which is linked above toward the beginning of this post, is the supplemental material I devised had I decided I was up to managing a bootcamp visit. I wasn't, but, you know, as I read through it I thought it would be valuable to publish it, anyway. It's the first time I've ever recounted, in detail, most of what I do in a normal day (that doesn't include errands, doctor or lab visits, attempts to get Mom "out and moving", etc.). I think it's important to include it in these journals.
Maybe, someday, I'll put one or more of my sisters through such a bootcamp. Maybe not. In the meantime, the idea certainly has merit and maybe someone can use the following post as a template for launching a bootcamp for extended family members of their own.
One more thing I wanted to mention to my "audience"; during the prickly phone call that preceded my decisions about "the visit", I mentioned to MPS that when "all this" began we should have worked it so that all four of us were directly involved in Mom's care sequentially, much like brainhell's comment on a long ago post. I also said that, at this point, it's probably too late to do this. It probably is, for several reasons, two of the most important being that continuity of medical care and direction would be severely compromised and Mom may be a bit too easily confused, now, to handle traveling from home to home four times a year, since we all live long distances from one another. An additional truth is that, when I began this journey with Mom, four pairs of hands and four houses were not only not necessary but would have been onerous, considering the distance involved. When her health went through its initial deterioration in the fall of 2000 everything happened quickly and needed to be addressed with such concerted force that dividing her year into four places and four different approaches would surely have been a very stupid move and would probably have had less than felicitous consequences for her health and her need to remain in a stable environment. I don't know; I suppose, under the right circumstances, this sort of arrangement could work but, frankly, from my experience with my mother, I actually can't see any time at which it would have worked for us. What would have worked, though, is if, after the health crises were over, my sisters would have learned the objectives I've set for her health and her life, learned the routines and the modes of thought that make these possible and learned how to host her successfully for a week here and a week there, maybe even a month here and a month there. Maybe that's still possible. Maybe not. I have ominous visions, now, of her spending time with one of my sisters, having some sort of health crisis, ending up in the hospital under an unfamiliar doctor's care and the doctor being directed by daughters and sons-in-law who aren't practiced in aggressively managing her health care; whereupon, Mom ends up with scopes in every last hole of her body, on medications that are clearly inappropriate, while everyone stands around and says, "Well, that's what the doctor recommended." Of course, I could always drop my "respite" and fly to the problem and take over management, which past medical misadventures inform me would be a series of, first, having to fight doctors and other medical professionals into accepting my understanding and management, then having to be there constantly to make sure they didn't take advantage of my absence. Frankly, those possibilities are easier for me to contemplate managing on familiar ground and I don't see any reason, being her "main manager", why I shouldn't insist that she remain in medical arenas and with doctors and hospitals who know me, even though they shudder when they see me coming.
Oh, and I want to mention two more things for you to search out, MPS, are you "listening"? Search: "medical advocate". If you scroll through the posts that come up you'll find one in which I published a review of information I sent to a company who is organizing a subsidiary to provide medical advocates. The information I sent delineates what I, as a caregiver who is a medical advocate, would want in a hired medical advocate. As well: Search: "My Directive to the Hospital" and read the entire post. See? I really am not merely a reactionary. I'm an experienced, knowledgeable participant in society's (minimal, at this time) efforts to improve caregiving on all fronts. While it's true that I am often outrageous in order to be an agitant, it's also true that I am not simply standing on the sidelines sighing and weeping.
...life continues...
...later.
