Tuesday, August 10, 2010
I'm thinking, a lot, about my mom, tonight.
I've had in my possession for about a month the novel Wolf Hall by Hilary Mantel. Although I was aware of it when it was first published, I purposely avoided it, just as I've avoided it for the last four weeks since I checked it out of the library and renewed it; and for the same reason. My mother and I would have loved reading this book together, me out loud to her, in the evening.
I hadn't spent much time with historical fiction prior to becoming my mother's companion. If I was interested in reading history, I preferred well-wrought volumes of historical fact with a surprising author slant. My mother, though, was seriously into historical fiction, especially about England, any period, both books and movies. I didn't think it would hurt me to widen my familiarity for her. Turns out, I really enjoyed it, enough to enthusiastically search out books for us to read aloud on my own. Having that interest honed by our companionship was responsible for my interest being piqued when I noticed this book soon after it was published in 2009. I almost immediately bought a copy of it...but the idea of reading it alone and silently, hmmm...well, it was hard to handle. Instead, I read two other Mantel books, neither of them historical fiction. I was delighted with her style and voice, so curiously original, imaginative and absorbing. I put off Wolf Hall, though, until, finally, a friend of mine egged me into reading it because my interest in Mantel had egged her into downloading this book onto her Kindle and she wants to know what I think of it.
I started it last night. I have to confess, reading it was difficult, at first. I had an irresistible urge to read it aloud and decided, after the first page or two, to try that. That, though, was frustrating, because when my mother and I read aloud we'd often stop and discuss a description or a handy turn of phrase...which is impossible to do, now. Reading it silently was also unsettling, though, increasing my sense of not having my mother here, until, finally, I decided to imagine that she is reading it over my shoulder, so to speak; more, really, through my mind. I'm into the hang of that technique, now, even enjoying it. I can not only appreciate the book on my own terms and imagine that she is privy to this but I can guess, successfully, I imagine, what her enjoyments are and what she might be "thinking" about this description or that handy turn of phrase...
I feel as though I've climbed over an obstacle, and it's anything but scary on the other side. Weird, though, how one never really gets over the death of someone with whom you fused. I keep having to adjust, and adjust some more, and then, a year and a half later, adjust again. I can understand, now, how easy it would be to decide against death and opt for immortality, as my mother did. I wish she had been right, or, you know, maybe she was, but she thought she was right about life like this never ending. Perhaps, if I live to be old, and, frankly, I doubt that I will, I will experience the pleasure of dementing into immortality as she did. If I die before I make it that far, though, at least, then, I'll be where she is, however and where ever that is, even if it is oblivion. Without meaning to be morose, because it doesn't feel like a morose thought, I look forward to that. I continue to miss her profoundly, although, it seems, not unbearably, which, I guess, is good.
Later.
I hadn't spent much time with historical fiction prior to becoming my mother's companion. If I was interested in reading history, I preferred well-wrought volumes of historical fact with a surprising author slant. My mother, though, was seriously into historical fiction, especially about England, any period, both books and movies. I didn't think it would hurt me to widen my familiarity for her. Turns out, I really enjoyed it, enough to enthusiastically search out books for us to read aloud on my own. Having that interest honed by our companionship was responsible for my interest being piqued when I noticed this book soon after it was published in 2009. I almost immediately bought a copy of it...but the idea of reading it alone and silently, hmmm...well, it was hard to handle. Instead, I read two other Mantel books, neither of them historical fiction. I was delighted with her style and voice, so curiously original, imaginative and absorbing. I put off Wolf Hall, though, until, finally, a friend of mine egged me into reading it because my interest in Mantel had egged her into downloading this book onto her Kindle and she wants to know what I think of it.
I started it last night. I have to confess, reading it was difficult, at first. I had an irresistible urge to read it aloud and decided, after the first page or two, to try that. That, though, was frustrating, because when my mother and I read aloud we'd often stop and discuss a description or a handy turn of phrase...which is impossible to do, now. Reading it silently was also unsettling, though, increasing my sense of not having my mother here, until, finally, I decided to imagine that she is reading it over my shoulder, so to speak; more, really, through my mind. I'm into the hang of that technique, now, even enjoying it. I can not only appreciate the book on my own terms and imagine that she is privy to this but I can guess, successfully, I imagine, what her enjoyments are and what she might be "thinking" about this description or that handy turn of phrase...
I feel as though I've climbed over an obstacle, and it's anything but scary on the other side. Weird, though, how one never really gets over the death of someone with whom you fused. I keep having to adjust, and adjust some more, and then, a year and a half later, adjust again. I can understand, now, how easy it would be to decide against death and opt for immortality, as my mother did. I wish she had been right, or, you know, maybe she was, but she thought she was right about life like this never ending. Perhaps, if I live to be old, and, frankly, I doubt that I will, I will experience the pleasure of dementing into immortality as she did. If I die before I make it that far, though, at least, then, I'll be where she is, however and where ever that is, even if it is oblivion. Without meaning to be morose, because it doesn't feel like a morose thought, I look forward to that. I continue to miss her profoundly, although, it seems, not unbearably, which, I guess, is good.
Later.
Saturday, June 12, 2010
Yet another month or so has come and gone...
...and I haven't updated here, even though I've read about half the books I mentioned in that previous Upcoming Attractions post. I think about posting, a lot, in fact I think about writing about other things a lot, but something about writing, at this time, makes me unusually pensive, so it's hard to return to it. Sometimes I force myself but all of that writing has taken place in other venues off-blog and has little or nothing to do with autobiography. Maybe that's a good thing.
I did, though, just now, finish updating the Movies, Mom & Me section of this series of journals. I've mentioned to a few of my friends that, if they'd like, they are welcome to borrow any of my considerable store of DVDs to watch. When I issue such an invitation, I give them the URL of the movies journal and encourage them to peruse the list to the left on the site pages. I invited yet another friend to do this yesterday and realized that one of the movies she'd probably like to watch is one I bought after my mother's death and isn't listed, so I'd better do some updating. I cover the explanation for continuing to post on that site, despite the name, in this post.
I don't know if this will come as a surprise to my readers, but I'm not writing much differently about movies than I did before my mother's death. As it turns out, all but two (one stunning exception in particular) of the movies I've purchased since my mother's death have been what I would consider emotional fluff movies, movie comfort-food, in other words, some of which I'm embarrassed to admit I have felt the need to own. Most of them, as well, are movies my mother watched and/or enjoyed. I continue to have days, sometimes more than one in a row, when I feel compelled to watch a string of movies my mother particularly loved. These are often movies I enjoy, as well. Actually, I think there are only a few movies I own that only my mother enjoyed. The only one I can think of right off is Pretty Woman. I detest this movie and haven't watched it since my mother died, but I also found, when I culled movies for library donation, that I wasn't ready to get rid of it. I suppose it is a symbol of some of the striking differences between my mother and me. When my eye scans across it while searching for other movies, as it did today, I notice I grin and shake my head; and imagine my mother is watching and grinning back, chin up, fearlessly defending her taste in movies. Perhaps I should frame it, like a photograph, and give it a prominent spot in my living room. Not such a bad idea, since I'm not a family/friend/acquaintance photograph person, never look at them unless forced (more than sometimes, I admit, the exercise is pleasant, since, of course, I'm in the company, either actual or psychic, of others when forced, but I never think to seek it out on my own), thus I have no photographs displayed in my home. Framing and displaying this movie, though, I imagine, would have the same effect on me as displayed family photographs had on my mother and has on so many others. I used to often catch my mother gazing at the photographs we used to have displayed on the walls of our shared homes. I asked her once, out of my emotional ignorance of such phenomena, what she thought about as she looked at the photographs. "Oh," she said, "I think about when the picture was taken, what the person might have been thinking, whether they're thinking the same things, now." I was impressed, even though I've not been able to develop this skill.
An off the cuff observation I made as I clicked into this site to post: The colors I chose for the site seem especially pregnant upon contemplation! The choices were completely unconscious. As I look at them now, though, the shades of gray intermingled with pastel pink, beige and lavender, I can't help but notice that they are peculiarly appropriate for this stage of my life. This is exactly how I feel: Alive while living under a cloud. Maybe that's not bad. I love overcast weather. I'm enjoying some today, in fact. Maybe it's today's weather that has made it easy for me to post. Hmmm...
...later.
I did, though, just now, finish updating the Movies, Mom & Me section of this series of journals. I've mentioned to a few of my friends that, if they'd like, they are welcome to borrow any of my considerable store of DVDs to watch. When I issue such an invitation, I give them the URL of the movies journal and encourage them to peruse the list to the left on the site pages. I invited yet another friend to do this yesterday and realized that one of the movies she'd probably like to watch is one I bought after my mother's death and isn't listed, so I'd better do some updating. I cover the explanation for continuing to post on that site, despite the name, in this post.
I don't know if this will come as a surprise to my readers, but I'm not writing much differently about movies than I did before my mother's death. As it turns out, all but two (one stunning exception in particular) of the movies I've purchased since my mother's death have been what I would consider emotional fluff movies, movie comfort-food, in other words, some of which I'm embarrassed to admit I have felt the need to own. Most of them, as well, are movies my mother watched and/or enjoyed. I continue to have days, sometimes more than one in a row, when I feel compelled to watch a string of movies my mother particularly loved. These are often movies I enjoy, as well. Actually, I think there are only a few movies I own that only my mother enjoyed. The only one I can think of right off is Pretty Woman. I detest this movie and haven't watched it since my mother died, but I also found, when I culled movies for library donation, that I wasn't ready to get rid of it. I suppose it is a symbol of some of the striking differences between my mother and me. When my eye scans across it while searching for other movies, as it did today, I notice I grin and shake my head; and imagine my mother is watching and grinning back, chin up, fearlessly defending her taste in movies. Perhaps I should frame it, like a photograph, and give it a prominent spot in my living room. Not such a bad idea, since I'm not a family/friend/acquaintance photograph person, never look at them unless forced (more than sometimes, I admit, the exercise is pleasant, since, of course, I'm in the company, either actual or psychic, of others when forced, but I never think to seek it out on my own), thus I have no photographs displayed in my home. Framing and displaying this movie, though, I imagine, would have the same effect on me as displayed family photographs had on my mother and has on so many others. I used to often catch my mother gazing at the photographs we used to have displayed on the walls of our shared homes. I asked her once, out of my emotional ignorance of such phenomena, what she thought about as she looked at the photographs. "Oh," she said, "I think about when the picture was taken, what the person might have been thinking, whether they're thinking the same things, now." I was impressed, even though I've not been able to develop this skill.
An off the cuff observation I made as I clicked into this site to post: The colors I chose for the site seem especially pregnant upon contemplation! The choices were completely unconscious. As I look at them now, though, the shades of gray intermingled with pastel pink, beige and lavender, I can't help but notice that they are peculiarly appropriate for this stage of my life. This is exactly how I feel: Alive while living under a cloud. Maybe that's not bad. I love overcast weather. I'm enjoying some today, in fact. Maybe it's today's weather that has made it easy for me to post. Hmmm...
...later.
Sunday, May 2, 2010
Reference bullet 3...
...in the Upcoming Attractions post: I stumbled over a page-long, author written blurb for Gail Sheehy's new book, Passages in Caregiving in the most recent issue of Costco Connection. It's a slick, shameless advertisement for the book, of course, but, after reading it, I was prompted to click into Gail Sheehy's personal website. I discovered an interesting promotional set-up for the book (to which I've linked the title of the book, above) which includes a series of short videos of interviews and well, it's hard to call some of the videos anything more or less than canned author sympathy. Since the book isn't due to be released until May 4, 2010, I was intrigued enough to watch all the videos and read the snippet of promotional literature on the page.
The most eye-catching excerpt from the verbiage is this promise: "MY BOOK --PASSAGES IN CAREGIVING-- WILL...SHOW YOU HOW TO DEAL WITH OUR BROKEN HEALTH CARE SYSTEM." Caps not mine. Bravo, I thought. I had to learn it by seat of the pants maneuvering. I can't wait to see what her experience and research has taught her and what she considers necessary to pass on to other caregivers.
The videos were, mostly, scrubbed, politically correct versions of what intense needs caregiving should be and the approved model under which people should operate when they find themselves in the position of having to practice intense needs caregiving for someone. This was a disappointment. All different kinds of people in all different kinds of situations find themselves in the position of having to render intense needs care to someone. There really isn't any "one size fits all" caregiving experience. There's good advice to access from similar, specific experiences, but, over all, there isn't one preferred way to think about it (although I'll be talking about a caveat to this a little later in the post) or, for that matter, one preferred way to do it.
My favorite video featuring the Colbert family encapsulated some of the raucous, just-do-it energy with which I became intimately familiar while being my mother's companion. If you're an active intense needs caregiver or about to embark on the vocation, watch this video. It's energizing. This is one feisty, aware, well-knit family. Watching this video might also inspire intense needs caregivers with more challenging, less willing extended families to think about their own family structure and how to approach the possibility of polishing and maximizing their unique familial embrace (with all that implies) around the member(s) in need of intense care. It was even inspiring for someone like me who found gathering my family in physical closeness around my mother impossible. It made me acutely aware of my family's actual involvement, which was that, through having been raised within my particular family, I had incredible internal resources to meet the tasks and challenges involved in doing it pretty much alone. It also caused me to feel gratitude for the outside-of-myself family resources on which I was able to count: One sister's medical knowledge; my sisters' unflagging sympathy; their willingness to accept and support whatever decisions I made; their mutual desire to continue to envision and relate to my mother, right up to the end of her life, as her eccentric, always here (versus what often happens, feeling as though an ancient one is "slowly, perceptibly leaving" or is "no longer herself") much valued, much loved self; their desire, after my mother's death, to recognize that my mother's life was also mine and to make sure I was not left flailing, trying to grab at survival. Watching it also allowed me to revel in the ingenuity I displayed in what I was able to provide and to feel as though the job I performed, which included the love I displayed, was well and imaginatively rendered, despite lack of access to right-here extended family involvement.
My least favorite video, Afterlife of a Caregiver, failed to take into account that most people who've been giving intense needs care didn't leave their lives to do it (even I don't consider that I left my life to do it; I expanded my life to do it). The materials I read and watched, in fact, clearly defined intense needs caregiving as an activity that causes you to leave your life. Hands here: How many of you caregivers really feel as though you left your life in order to provide intense needs care to someone? In this respect, the prescription the video gives to "rest" immediately after the death of the one for whom the caregiver cared is nonsensical. In one video Sheehy mentions that 48% of intense needs caregivers are giving care in the midst of family lives that include partners and other dependents. If this is true (I'll be checking this statistic, I think I know where she got it), well, you know, it's more a case of "life goes on" than "now you can reshape your life" or "now you have a marvelous opportunity to reinvent yourself". For those, like me, who dove headfirst and embraced living fairly exclusively inside the realm of intense needs caregiving, a little of this perspective might be true but, frankly, life goes on even for me. Often, for caregivers like me, it isn't a matter of "reinventing" one's life but simply continuing to survive in a way that remains compatible with one's present attitude; just like everyone else. Maybe there are interests I put aside to which I've already or will return. Maybe the person I've become as a result of my extraordinary adventure with my mother will describe new paths. This isn't anything exclusive to the end of intense needs caregiving. It's part of the continuum of living. I repeat: Life goes on.
The video I found the most disturbing, featuring Heather Hatlow-Porter, contained a snippet in which Heather admits to a period in which she had to admit she needed help and, "...admit there was a serious problem, and I didn't want to do that." Sheehy's response? "You thought you had to do it all. You were playing God." What?!? Heather continues, "...because I thought that it was my job to take care of my husband and my son and if I wasn't able to do that and I needed someone else to come in and help, that somehow made me a failure." Aside from the fact that this video is extremely disjointed, Sheehy, I think, completely misses the point of Heather's conundrum. Heather was paying attention to yet another school of intense needs caregiving thought that plagues our society in particular and continues to echo throughout the multiple halls of community opinion AND the caregiving industry, "Not in my backyard and not unless we can provide you with superior assistance that will help you at a cost to us of little or nothing and a cost to you of, well, let's just say, if you have to ask you can't afford it...or, you can decide that you're licked, lower your standards and go with the inadequate, sometimes dangerous help you are able to afford and/or that is available. In fact, that's what you should do. It's good for the American economy and that's what caregiving is all about." This attitude is insidiously illustrated in a later video in which a caregiver admits to a disturbing but all too frequent and unfortunately, at this time, unavoidable occurrence: Debbie, who is rendering intense needs caregiving to three adults, comes to the end of her rope and takes a week long break. In response to Sheehy's question, "Did you need a rest?" Debbie answers, "Oh, yeah. I think everybody should be willing to give themselves permission to take a break. Because if you don't, the resentment builds up and your ability to do loving caregiving is compromised. When I was on this break with Irene, during that week my mother ended up getting an infection that killed her a month later. And, coming back from retreat and having to confront that, all the guilt came rolling over me, but I was able to flip it and I was able to realize that I would not have been able to care for her lovingly, to be present with her during this horrible, horrible experience that we went through together if I hadn't taken that break. So, really, it was a gift." This snippet is presented as is without commentary from Sheehy. My own experience, along with Debbie's admission of her guilt, informs me that the chances are high that her mother contracted the infection due to inadequate, probably professional care during her daughter's absence. This is the conundrum that every intense needs caregiver faces in our society. Take the break you so desperately need and risk endangering your loved one at the hands of the professionals. The risk, in this country, at this time, at least, is extremely high. I took the risk (although I can't really say the risks I took were as a result of planned breaks; they happened in the course of my mother either needing short term skilled nursing care or me needing an extra hand to allow me to perform errands away from home) a few times and only nearly avoided deleterious mental and physical health consequences for my mother. Once I was unable to avoid the deleterious consequences although, luckily, those consequences did not develop into a catastrophe. The reason they didn't is that I remained on call to the facility that was "respiting" me, visited her every day and as soon as the consequence became apparent I became "intensely" involved, again. I don't fault Debbie for taking the break she needed, nor for believing that she would not have been able to continue to provide loving care if she hadn't taken the break. I fault the system to which Debbie was forced to consign her mother while she took respite. Debbie is obviously a highly concerned caregiver. I'm convinced she procured the best care she could find and was able to afford for her mother. It wasn't, though, as is often usual, good enough. What especially disturbs me about this story is that, because the complexity of the conundrum isn't adequately addressed, it implies that caregivers have a duty to themselves to opt for inadequate care when we feel as though we are at our wit's end. This isn't true, and it undercuts those of us who find imaginative, internal resources that provide us with the refreshment we need to continue to provide care even as we decide a break that consigns our loved one to inadequate, dangerous professional care is out of the question. Ultimately, of course, intense needs caregivers, all caregivers, in fact, should be able to take breaks without fearing the consequences for themselves or their loved ones. We aren't, as a country, there, yet, though. Far from it. Thus, it seems to me insensitive and irresponsible to confuse and condemn in-the-trenches caregivers who opt out of breaks by predicting that a lack of pre-approved, politically correct breaks will endanger their ability to adequately care for their loved one. Lots of us caregivers know different. I'm one of them.
As to the accusation of "Playing God": The interview with Heather discombobulated me as to what was meant by this phrase, so I referenced the Costco Connection article which, admittedly, is more a blurb than an explanation. Here's what the article says about "Playing God", which Sheehy has identified as a "passage": "If you begin to think you are responsible for keeping your loved one alive and safe, you will eventually find yourself at the next turn: Playing God [italics and bolding mimic the article]. This can become an unhealthy, co-dependent relationship." Okay. Forget my views about "co-dependency", which are far to the left of accepted. If those who decide (for whatever reason) to undertake intense needs care for a loved one or anyone else aren't supposed to think themselves "responsible for keeping your loved one alive and safe", WHO THE HELL IS SUPPOSED TO BE RESPONSIBLE? Doctors often require that their clients sign away their own professional responsibility before they will treat a patient. So do hospitals. Although there are regulations that are supposed to ensure that care facilities act responsibly, they are often ignored and not enforced. When they are enforced, the damage has usually already been done. In addition, Medicare and Medicaid priorities are known for requiring responsibility and undercutting the ability to adequate perform these responsibilities through onerous prescriptions that limit the amount and type of care. Suing may seem like a reasonable response to professional damage done but it's neither clear-cut, easy, nor free of economic costs to the plaintiff. In the meantime, are you telling me that the people who need care are ultimately responsible for keeping themselves alive and safe? Oh, my. This is getting weird! In addition, regarding "Playing God", Heather's belief that she and she alone should be providing care are directly related to our society telling her that we don't want to be involved, except under certain remunerative, ultimately, at this time, inadequate circumstances. As well, my experience tells me that the happy tableau of "family meetings" and "family involvement" is quite a bit trickier that it looks and often unsuccessful, especially in the case of wide-spread extended family. Moreover, I found that it is often impossible to enlist exactly the help you really need from extended family, especially in a country in which the prevailing culture is a proud homily to self-responsibility. We are so busy being responsible for "our own", as one of my sister's has termed it, that we actually don't have the time, flexibility and often not the means to be responsible for anyone else.
I'm also bothered by the fact that the book and the promotional materials consider caregiving, well, let me quote the author from her Costco Connection article: "Family caregiving has become a predictable crisis for Americans in middle and later life." The subtitle of the books classes the current state of caregiving as "chaos". Yes, of course, when one gives care to anyone, a child, a friend, a lover, an elder, you can count on the possibility of crises and feeling as though certain periods are chaotic. But to consider the entire practice of caregiving, especially intense needs caregiving, a "crisis" and largely "chaotic" is a blatant misrepresentation of what actually goes on in the name of all kinds of caregiving, including the intense needs kind. In one blurb, Sheehy refers to long-term home care as "limbo"; which I consider an attitude, not a reality. I'm sure these appellations are meant to sell books by appealing to the hardest, most harrying circumstances that intense needs caregivers are wont to face. It's always easier to sell something if you can appeal to a primal emotion. Feeling out of control is certainly primal, even if it isn't necessarily the day-to-day state of most intense needs caregivers. It's the state we remember...rather like telling stories about the time you broke your back or almost died in childbirth. I'm also sure that these blurbs are designed to unreasonably scare the bejesus out of people who are approaching or have just embarked upon caregiving, intense needs or not. "My book can dissipate your fear," is the underlying message. People, people, people, at the risk of repeating myself, WE ARE PROGRAMMED TO CARE! CARING IS NOT INHERENTLY CRITICAL, IT IS INHERENTLY SOCIAL! WE ALREADY CARE, EFFUSIVELY, FOR EVERYONE WE KNOW AND WITH WHOM WE LIVE! IF WE FEEL OVERBURDENED BY THE CALLS WE HEAR TO CARE, THE NECESSITIES OF CARING, MAYBE IT'S BECAUSE WE LIVE IN A SOCIETY THAT HAS TRIED TO IGNORE THE CALL TO CARE AT A SOCIAL LEVEL WHILE INSISTING IT TAKE PLACE ON AN ALMOST EXCLUSIVELY PERSONAL LEVEL!
I haven't read the book, but I'll be procuring a copy as soon as it's published. Despite the concerns raised by the press mentioned above, I remain hopeful about its contents. Evidence this quote from the website, "If we can forge a community of people with this shared experience, together we can raise awareness and shape public policy." Yes, I say, yes. Absolutely. We will not, though, successfully "raise awareness" until we begin to take seriously, on a personal and a societal level, the idea that we are our fellow's keepers. Period. Some societies are doing this. Ours is not. Yet. Maybe this book will help. Maybe, too, I've already managed to marginalize my possible opinions by exposing myself to the hype. I'll keep that in mind and try to read the book with a kind, open eye. I'll report back...
...later...after I've read the book, not just the blurbs.
P.S. How come I've never been interviewed for any of these intense needs caregiver surveys? How many other intense needs caregivers wonder the same?
The most eye-catching excerpt from the verbiage is this promise: "MY BOOK --PASSAGES IN CAREGIVING-- WILL...SHOW YOU HOW TO DEAL WITH OUR BROKEN HEALTH CARE SYSTEM." Caps not mine. Bravo, I thought. I had to learn it by seat of the pants maneuvering. I can't wait to see what her experience and research has taught her and what she considers necessary to pass on to other caregivers.
The videos were, mostly, scrubbed, politically correct versions of what intense needs caregiving should be and the approved model under which people should operate when they find themselves in the position of having to practice intense needs caregiving for someone. This was a disappointment. All different kinds of people in all different kinds of situations find themselves in the position of having to render intense needs care to someone. There really isn't any "one size fits all" caregiving experience. There's good advice to access from similar, specific experiences, but, over all, there isn't one preferred way to think about it (although I'll be talking about a caveat to this a little later in the post) or, for that matter, one preferred way to do it.
My favorite video featuring the Colbert family encapsulated some of the raucous, just-do-it energy with which I became intimately familiar while being my mother's companion. If you're an active intense needs caregiver or about to embark on the vocation, watch this video. It's energizing. This is one feisty, aware, well-knit family. Watching this video might also inspire intense needs caregivers with more challenging, less willing extended families to think about their own family structure and how to approach the possibility of polishing and maximizing their unique familial embrace (with all that implies) around the member(s) in need of intense care. It was even inspiring for someone like me who found gathering my family in physical closeness around my mother impossible. It made me acutely aware of my family's actual involvement, which was that, through having been raised within my particular family, I had incredible internal resources to meet the tasks and challenges involved in doing it pretty much alone. It also caused me to feel gratitude for the outside-of-myself family resources on which I was able to count: One sister's medical knowledge; my sisters' unflagging sympathy; their willingness to accept and support whatever decisions I made; their mutual desire to continue to envision and relate to my mother, right up to the end of her life, as her eccentric, always here (versus what often happens, feeling as though an ancient one is "slowly, perceptibly leaving" or is "no longer herself") much valued, much loved self; their desire, after my mother's death, to recognize that my mother's life was also mine and to make sure I was not left flailing, trying to grab at survival. Watching it also allowed me to revel in the ingenuity I displayed in what I was able to provide and to feel as though the job I performed, which included the love I displayed, was well and imaginatively rendered, despite lack of access to right-here extended family involvement.
My least favorite video, Afterlife of a Caregiver, failed to take into account that most people who've been giving intense needs care didn't leave their lives to do it (even I don't consider that I left my life to do it; I expanded my life to do it). The materials I read and watched, in fact, clearly defined intense needs caregiving as an activity that causes you to leave your life. Hands here: How many of you caregivers really feel as though you left your life in order to provide intense needs care to someone? In this respect, the prescription the video gives to "rest" immediately after the death of the one for whom the caregiver cared is nonsensical. In one video Sheehy mentions that 48% of intense needs caregivers are giving care in the midst of family lives that include partners and other dependents. If this is true (I'll be checking this statistic, I think I know where she got it), well, you know, it's more a case of "life goes on" than "now you can reshape your life" or "now you have a marvelous opportunity to reinvent yourself". For those, like me, who dove headfirst and embraced living fairly exclusively inside the realm of intense needs caregiving, a little of this perspective might be true but, frankly, life goes on even for me. Often, for caregivers like me, it isn't a matter of "reinventing" one's life but simply continuing to survive in a way that remains compatible with one's present attitude; just like everyone else. Maybe there are interests I put aside to which I've already or will return. Maybe the person I've become as a result of my extraordinary adventure with my mother will describe new paths. This isn't anything exclusive to the end of intense needs caregiving. It's part of the continuum of living. I repeat: Life goes on.
The video I found the most disturbing, featuring Heather Hatlow-Porter, contained a snippet in which Heather admits to a period in which she had to admit she needed help and, "...admit there was a serious problem, and I didn't want to do that." Sheehy's response? "You thought you had to do it all. You were playing God." What?!? Heather continues, "...because I thought that it was my job to take care of my husband and my son and if I wasn't able to do that and I needed someone else to come in and help, that somehow made me a failure." Aside from the fact that this video is extremely disjointed, Sheehy, I think, completely misses the point of Heather's conundrum. Heather was paying attention to yet another school of intense needs caregiving thought that plagues our society in particular and continues to echo throughout the multiple halls of community opinion AND the caregiving industry, "Not in my backyard and not unless we can provide you with superior assistance that will help you at a cost to us of little or nothing and a cost to you of, well, let's just say, if you have to ask you can't afford it...or, you can decide that you're licked, lower your standards and go with the inadequate, sometimes dangerous help you are able to afford and/or that is available. In fact, that's what you should do. It's good for the American economy and that's what caregiving is all about." This attitude is insidiously illustrated in a later video in which a caregiver admits to a disturbing but all too frequent and unfortunately, at this time, unavoidable occurrence: Debbie, who is rendering intense needs caregiving to three adults, comes to the end of her rope and takes a week long break. In response to Sheehy's question, "Did you need a rest?" Debbie answers, "Oh, yeah. I think everybody should be willing to give themselves permission to take a break. Because if you don't, the resentment builds up and your ability to do loving caregiving is compromised. When I was on this break with Irene, during that week my mother ended up getting an infection that killed her a month later. And, coming back from retreat and having to confront that, all the guilt came rolling over me, but I was able to flip it and I was able to realize that I would not have been able to care for her lovingly, to be present with her during this horrible, horrible experience that we went through together if I hadn't taken that break. So, really, it was a gift." This snippet is presented as is without commentary from Sheehy. My own experience, along with Debbie's admission of her guilt, informs me that the chances are high that her mother contracted the infection due to inadequate, probably professional care during her daughter's absence. This is the conundrum that every intense needs caregiver faces in our society. Take the break you so desperately need and risk endangering your loved one at the hands of the professionals. The risk, in this country, at this time, at least, is extremely high. I took the risk (although I can't really say the risks I took were as a result of planned breaks; they happened in the course of my mother either needing short term skilled nursing care or me needing an extra hand to allow me to perform errands away from home) a few times and only nearly avoided deleterious mental and physical health consequences for my mother. Once I was unable to avoid the deleterious consequences although, luckily, those consequences did not develop into a catastrophe. The reason they didn't is that I remained on call to the facility that was "respiting" me, visited her every day and as soon as the consequence became apparent I became "intensely" involved, again. I don't fault Debbie for taking the break she needed, nor for believing that she would not have been able to continue to provide loving care if she hadn't taken the break. I fault the system to which Debbie was forced to consign her mother while she took respite. Debbie is obviously a highly concerned caregiver. I'm convinced she procured the best care she could find and was able to afford for her mother. It wasn't, though, as is often usual, good enough. What especially disturbs me about this story is that, because the complexity of the conundrum isn't adequately addressed, it implies that caregivers have a duty to themselves to opt for inadequate care when we feel as though we are at our wit's end. This isn't true, and it undercuts those of us who find imaginative, internal resources that provide us with the refreshment we need to continue to provide care even as we decide a break that consigns our loved one to inadequate, dangerous professional care is out of the question. Ultimately, of course, intense needs caregivers, all caregivers, in fact, should be able to take breaks without fearing the consequences for themselves or their loved ones. We aren't, as a country, there, yet, though. Far from it. Thus, it seems to me insensitive and irresponsible to confuse and condemn in-the-trenches caregivers who opt out of breaks by predicting that a lack of pre-approved, politically correct breaks will endanger their ability to adequately care for their loved one. Lots of us caregivers know different. I'm one of them.
As to the accusation of "Playing God": The interview with Heather discombobulated me as to what was meant by this phrase, so I referenced the Costco Connection article which, admittedly, is more a blurb than an explanation. Here's what the article says about "Playing God", which Sheehy has identified as a "passage": "If you begin to think you are responsible for keeping your loved one alive and safe, you will eventually find yourself at the next turn: Playing God [italics and bolding mimic the article]. This can become an unhealthy, co-dependent relationship." Okay. Forget my views about "co-dependency", which are far to the left of accepted. If those who decide (for whatever reason) to undertake intense needs care for a loved one or anyone else aren't supposed to think themselves "responsible for keeping your loved one alive and safe", WHO THE HELL IS SUPPOSED TO BE RESPONSIBLE? Doctors often require that their clients sign away their own professional responsibility before they will treat a patient. So do hospitals. Although there are regulations that are supposed to ensure that care facilities act responsibly, they are often ignored and not enforced. When they are enforced, the damage has usually already been done. In addition, Medicare and Medicaid priorities are known for requiring responsibility and undercutting the ability to adequate perform these responsibilities through onerous prescriptions that limit the amount and type of care. Suing may seem like a reasonable response to professional damage done but it's neither clear-cut, easy, nor free of economic costs to the plaintiff. In the meantime, are you telling me that the people who need care are ultimately responsible for keeping themselves alive and safe? Oh, my. This is getting weird! In addition, regarding "Playing God", Heather's belief that she and she alone should be providing care are directly related to our society telling her that we don't want to be involved, except under certain remunerative, ultimately, at this time, inadequate circumstances. As well, my experience tells me that the happy tableau of "family meetings" and "family involvement" is quite a bit trickier that it looks and often unsuccessful, especially in the case of wide-spread extended family. Moreover, I found that it is often impossible to enlist exactly the help you really need from extended family, especially in a country in which the prevailing culture is a proud homily to self-responsibility. We are so busy being responsible for "our own", as one of my sister's has termed it, that we actually don't have the time, flexibility and often not the means to be responsible for anyone else.
I'm also bothered by the fact that the book and the promotional materials consider caregiving, well, let me quote the author from her Costco Connection article: "Family caregiving has become a predictable crisis for Americans in middle and later life." The subtitle of the books classes the current state of caregiving as "chaos". Yes, of course, when one gives care to anyone, a child, a friend, a lover, an elder, you can count on the possibility of crises and feeling as though certain periods are chaotic. But to consider the entire practice of caregiving, especially intense needs caregiving, a "crisis" and largely "chaotic" is a blatant misrepresentation of what actually goes on in the name of all kinds of caregiving, including the intense needs kind. In one blurb, Sheehy refers to long-term home care as "limbo"; which I consider an attitude, not a reality. I'm sure these appellations are meant to sell books by appealing to the hardest, most harrying circumstances that intense needs caregivers are wont to face. It's always easier to sell something if you can appeal to a primal emotion. Feeling out of control is certainly primal, even if it isn't necessarily the day-to-day state of most intense needs caregivers. It's the state we remember...rather like telling stories about the time you broke your back or almost died in childbirth. I'm also sure that these blurbs are designed to unreasonably scare the bejesus out of people who are approaching or have just embarked upon caregiving, intense needs or not. "My book can dissipate your fear," is the underlying message. People, people, people, at the risk of repeating myself, WE ARE PROGRAMMED TO CARE! CARING IS NOT INHERENTLY CRITICAL, IT IS INHERENTLY SOCIAL! WE ALREADY CARE, EFFUSIVELY, FOR EVERYONE WE KNOW AND WITH WHOM WE LIVE! IF WE FEEL OVERBURDENED BY THE CALLS WE HEAR TO CARE, THE NECESSITIES OF CARING, MAYBE IT'S BECAUSE WE LIVE IN A SOCIETY THAT HAS TRIED TO IGNORE THE CALL TO CARE AT A SOCIAL LEVEL WHILE INSISTING IT TAKE PLACE ON AN ALMOST EXCLUSIVELY PERSONAL LEVEL!
I haven't read the book, but I'll be procuring a copy as soon as it's published. Despite the concerns raised by the press mentioned above, I remain hopeful about its contents. Evidence this quote from the website, "If we can forge a community of people with this shared experience, together we can raise awareness and shape public policy." Yes, I say, yes. Absolutely. We will not, though, successfully "raise awareness" until we begin to take seriously, on a personal and a societal level, the idea that we are our fellow's keepers. Period. Some societies are doing this. Ours is not. Yet. Maybe this book will help. Maybe, too, I've already managed to marginalize my possible opinions by exposing myself to the hype. I'll keep that in mind and try to read the book with a kind, open eye. I'll report back...
...later...after I've read the book, not just the blurbs.
P.S. How come I've never been interviewed for any of these intense needs caregiver surveys? How many other intense needs caregivers wonder the same?
Labels: book report, caregiver lit, Passages in Caregiving
I'm adding a bullet...
...#8, to be exact, to my Upcoming Attractions post. You can satisfy your curiosity about why the bullet has been added by referencing the recent comment exchange on the That was quick! post.
Saturday, May 1, 2010
That was quick!
One of my Upcoming Attractions listed in the immediately previous post has already been covered, much more thoroughly and interestingly than I could have accomplished.
I'm an unashamed geek when it comes to information, so one of my favorite sites has always been Mona Johnson's The Tangled Neuron. Granted, I haven't been there in quite awhile. My only excuse is that I haven't been anywhere on the web in quite awhile. After publishing my Upcoming Attractions post I decided to wander over to Mona's site and see what she had to say about the newly "advertised" report mentioned in bullet 7 of my immediately previous post. I was sure she'd have something. Mona is nothing if not up-to-the-minute on cognitive research and typically has more information and more links to more information than anyone else. Turns out, she attended the webcast of the NIH State-of-the-Science Conference in which the report was discussed and has written several posts about the report and other matters covered in the conference. Below are links to all the posts she's written so far, all of which should be considered necessary reading by anyone interested in all manner of cognitive decline [Sometimes I think it would be better to refer to this area of interest and study as "cognitive aberration", since "decline" often allows people to presuppose behaviors that a subject may not be exhibiting...or that people who wouldn't be considered in "cognitive decline" do exhibit; this concern, by the way, is a topic that was also covered in the conference and about which Mona reports. Then, again, "aberration" has its own cross to bear...]. The first link below directs you to her post that covers what I was planning to write about; by the way, read the comments to her posts, as well. They often contain auxiliary information pertinent to the posts:
Later.
I'm an unashamed geek when it comes to information, so one of my favorite sites has always been Mona Johnson's The Tangled Neuron. Granted, I haven't been there in quite awhile. My only excuse is that I haven't been anywhere on the web in quite awhile. After publishing my Upcoming Attractions post I decided to wander over to Mona's site and see what she had to say about the newly "advertised" report mentioned in bullet 7 of my immediately previous post. I was sure she'd have something. Mona is nothing if not up-to-the-minute on cognitive research and typically has more information and more links to more information than anyone else. Turns out, she attended the webcast of the NIH State-of-the-Science Conference in which the report was discussed and has written several posts about the report and other matters covered in the conference. Below are links to all the posts she's written so far, all of which should be considered necessary reading by anyone interested in all manner of cognitive decline [Sometimes I think it would be better to refer to this area of interest and study as "cognitive aberration", since "decline" often allows people to presuppose behaviors that a subject may not be exhibiting...or that people who wouldn't be considered in "cognitive decline" do exhibit; this concern, by the way, is a topic that was also covered in the conference and about which Mona reports. Then, again, "aberration" has its own cross to bear...]. The first link below directs you to her post that covers what I was planning to write about; by the way, read the comments to her posts, as well. They often contain auxiliary information pertinent to the posts:
- NIH State-of-the-Science Conference - Draft Consensus
- NIH State-of-the-Science Conference - Day 1
- NIH State-of-the-Science Conference - Day 2
- NIH State-of-the-Science Conference - Public Discussion of Draft Statement
- NIH State-of-the-Science Conference - Press Release and Briefing
Later.
Labels: cognition science
Friday, April 30, 2010
Upcoming Attractions
As has been my habit in previous sections of this journal, this post is more a reminder to myself than a teaser to readers of subjects for upcoming posts (not listed in any particular order; numbers are for identification convenience, only):
Later.
- A review of the book but this is my mother! by Cynthia Loucks;
- A review of the book When I Married My Mother: A Daughter's Search for What Really Matters - and How She Found It Caring for Mama Jo by Jo Maeder [Am I the only person who's getting sick of subtitles, especially indefinitely strung out subtitles???];
- A review of the soon to be published book Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy;
- Review of the book Life with Pop: Lessons on Caring for an Aging Parent by Janis Abrams Spring, PhD and Michael Spring;
- A review and personal analysis of the recently published AARP sponsored survey of caregivers in the United States;
- I know a couple of people who reside in ASL's; one a fairly long time friend and continuing member of the book club to which I belong, the other a second cousin with whom I have recently reestablished contact; both of them are nonagenarians. I'm hoping to interview them about the circumstances of their moves and their experiences of living in a ASL. If those interviews go well, I'm hoping to do more.
- Commentary on a recently published Medscape article about a review of the existent research on life-style measures thought to help prevent or delay the onset of cognitive decline.
- Read and comment on The Myth of Alzheimer's by Peter Whitehouse and Daniel George.
Later.
Labels: teaser
This is where I'm continuing.
It's been so long since I've written anything that pertains to the aftermath of The Mom & Me Journals dot Net that most of my former followers probably think, despite my best intentions immediately following the death of my mother, I finally had to come to grips with the seeming inevitability of my mother's death fashioning an end to the journals. Certainly, our lived together life is over. What else is there to write about? "Poor Gail", I imagine some readers having thought, if anyone besides me thought about it at all, "she just can't let her mother go. Oh well, she'll get it eventually." Then, as weeks piled into months and postings seemed to stop, probably a few figured, "Ah, she's got it, now. It's over."
And, of course, "it" is. Setting up a grieving journal, In Sane Grief, was a part of my attempt to continue without continuing. Not long after I started that journal, though, I discovered that as I became more involved in a grief support group, I also became less possessed of the desire to talk or write about my experience of grief with anyone other than the members of the group. I alluded to this development a bit in the most recent post published at that site. Now, several months after having written that post, although I remain an active member of my grief support cadre (yes, we can legitimately refer to ourselves as a cadre; we don't just grieve, we have become a tightly knit community of people living with deep grief with a peculiar identity which allows us to extend our support and insights into our larger communities; an unusual development, yes, for a grief support group but, well, I guess I got lucky) I am discovering a desire to write about my experience of deep grief (not to be confused with complicated grief, even though, in my experience, what might be termed "common grief" can be quite complicated). I may write about that at the afore-linked grief journal. My experience of grieving has become so intertwined with the rest of my life, though, that I may post about it here. I'm not yet sure. Either way, I'll let you know if posts exclusive to my experience of grief begin to pile up "over there".
My interest in ancienthood and caring for our ancients has not waned, though. Neither has my interest in my mother's and my experience of mutual companionship over the last years of her life, nor my new curiosity about how our companionship changed me and what sort of person I am, now. For me, interest and curiosity always imply writing. My fingers may not have done much writing, lately, but my brain has. I'm feeling, now, that it's about time to transfer the activity of writing to the keyboard.
I decided it would be easier to write this part of my life out in a separate journal. No doubt, as I write, I'll be reminded of prior thoughts in pre-mom's-death posts. But, you know, I want a clean sheet of paper, which, if I bothered to analyze the desire, is probably "a good thing", or evidence of me "moving on", which would relieve many who know me, I'm sure...or you know, indicative of some other such common sociological nonsense. Whatever. This is my clean sheet of paper.
Later.
And, of course, "it" is. Setting up a grieving journal, In Sane Grief, was a part of my attempt to continue without continuing. Not long after I started that journal, though, I discovered that as I became more involved in a grief support group, I also became less possessed of the desire to talk or write about my experience of grief with anyone other than the members of the group. I alluded to this development a bit in the most recent post published at that site. Now, several months after having written that post, although I remain an active member of my grief support cadre (yes, we can legitimately refer to ourselves as a cadre; we don't just grieve, we have become a tightly knit community of people living with deep grief with a peculiar identity which allows us to extend our support and insights into our larger communities; an unusual development, yes, for a grief support group but, well, I guess I got lucky) I am discovering a desire to write about my experience of deep grief (not to be confused with complicated grief, even though, in my experience, what might be termed "common grief" can be quite complicated). I may write about that at the afore-linked grief journal. My experience of grieving has become so intertwined with the rest of my life, though, that I may post about it here. I'm not yet sure. Either way, I'll let you know if posts exclusive to my experience of grief begin to pile up "over there".
My interest in ancienthood and caring for our ancients has not waned, though. Neither has my interest in my mother's and my experience of mutual companionship over the last years of her life, nor my new curiosity about how our companionship changed me and what sort of person I am, now. For me, interest and curiosity always imply writing. My fingers may not have done much writing, lately, but my brain has. I'm feeling, now, that it's about time to transfer the activity of writing to the keyboard.
I decided it would be easier to write this part of my life out in a separate journal. No doubt, as I write, I'll be reminded of prior thoughts in pre-mom's-death posts. But, you know, I want a clean sheet of paper, which, if I bothered to analyze the desire, is probably "a good thing", or evidence of me "moving on", which would relieve many who know me, I'm sure...or you know, indicative of some other such common sociological nonsense. Whatever. This is my clean sheet of paper.
Later.
Labels: apologia
