Friday, July 14, 2006
We're experiencing our days of real heat for this year...
...as I write. Yesterday, today, tomorrow. Then, with luck, the monsoon reestablishes itself. Heat is relative, though, really, when I think about it. I can remember living in Phoenix year round without a/c, with only an evaporative cooler on its last legs to slake the shriveling heat. Until 1994, all my driving time in the Phoenix Metroplex (which was a lot...Phoenix continues to have a terrible transit system) was done in an unairconditioned car. I vaguely remember priding myself on my skills as a desert heat rat.
I still haven't taken Mom in for her blood draw. I considered doing that today. She's doing fine. She also, day by day, has expressed a preference for not getting needle-stuck. Since things are going well, despite Mom's and my mutual sluggishness at the moment, I've been inclined to say, "That's fine. We'll see how you feel about it tomorrow." This "tomorrow", which is today, I'm not even going to suggest the blood draw when she awakens.
Something I've been thinking about lately, triggered by a recent post (the link will take you to the specific post) at The Tangled Neuron: What this kind of caregiving does to a person. It's been on my mind because within the last month or so I've ventured beyond my own sphere, allowed myself to be introduced to a few other caregivers' journals and noticed, without much surprise, that all the caregivers writing these journals are daughters. The post mentioned immediately above is a review of some studies of caregiver health while the caregiver is on the job. The results look grim, not insignificantly more so for men who give care. When I read this post my interpretation of the material was tempered by information I came across over a year ago and wrote about at the time: A study of caregivers who were daughters to the Ancient Ones for whom they cared. A link to a review of the study is in the linked post immediately previous. In a nutshell, the study suggested that, "Well-being and ability to meet one’s basic needs are both higher for former caregivers than for non-caregivers."
This is important information. What it tells us is that for most of us caregiver daughters, after we're put through the ringer we pop back into shape, typically emerging in better shape than if we hadn't gone through the ringer.
I cannot deny that caregiving for Ancient Ones, especially those in the throes of dementia, is rigorous. It arouses feelings of anger, depression, stress and exhaution that are unlike any experienced in any other type of work. These feelings are especially tricky for related caregivers because the act of caregiving forces the caregiver to face and deal with (or not, depending on the circumstances) relationship baggage on the spot. They are compounded by both the actual lack of reliable help and appropriate counsel and the caregiver's perception of this lack. It's important to know, though, that there's an excellent chance that, when all is said and done, you'll not only be all right, you'll be better than you would have been if you hadn't been a caregiver to An Ancient One.
One of the points made in the research cited in The Tangled Neuron is that it appears as though caregivers to the demented are at higher risk for "cognitive problems". This is scary, indeed, so I'd like to temper the fear with some of my own observations:
Whew. Glad that's over.
Later.
I still haven't taken Mom in for her blood draw. I considered doing that today. She's doing fine. She also, day by day, has expressed a preference for not getting needle-stuck. Since things are going well, despite Mom's and my mutual sluggishness at the moment, I've been inclined to say, "That's fine. We'll see how you feel about it tomorrow." This "tomorrow", which is today, I'm not even going to suggest the blood draw when she awakens.
Something I've been thinking about lately, triggered by a recent post (the link will take you to the specific post) at The Tangled Neuron: What this kind of caregiving does to a person. It's been on my mind because within the last month or so I've ventured beyond my own sphere, allowed myself to be introduced to a few other caregivers' journals and noticed, without much surprise, that all the caregivers writing these journals are daughters. The post mentioned immediately above is a review of some studies of caregiver health while the caregiver is on the job. The results look grim, not insignificantly more so for men who give care. When I read this post my interpretation of the material was tempered by information I came across over a year ago and wrote about at the time: A study of caregivers who were daughters to the Ancient Ones for whom they cared. A link to a review of the study is in the linked post immediately previous. In a nutshell, the study suggested that, "Well-being and ability to meet one’s basic needs are both higher for former caregivers than for non-caregivers."
This is important information. What it tells us is that for most of us caregiver daughters, after we're put through the ringer we pop back into shape, typically emerging in better shape than if we hadn't gone through the ringer.
I cannot deny that caregiving for Ancient Ones, especially those in the throes of dementia, is rigorous. It arouses feelings of anger, depression, stress and exhaution that are unlike any experienced in any other type of work. These feelings are especially tricky for related caregivers because the act of caregiving forces the caregiver to face and deal with (or not, depending on the circumstances) relationship baggage on the spot. They are compounded by both the actual lack of reliable help and appropriate counsel and the caregiver's perception of this lack. It's important to know, though, that there's an excellent chance that, when all is said and done, you'll not only be all right, you'll be better than you would have been if you hadn't been a caregiver to An Ancient One.
One of the points made in the research cited in The Tangled Neuron is that it appears as though caregivers to the demented are at higher risk for "cognitive problems". This is scary, indeed, so I'd like to temper the fear with some of my own observations:
- I endured a period of a few more than a few years when I noticed that my memory was not functioning as well as I expected and my powers of analysis were sluggish and sometimes not to be trusted. Amazingly, as I'm approaching the end of menopause my "cognitive problems" have disappeared within the last six months and I've found myself, surprisingly, in possession of a mind even more acute than I'd previously experienced. This is important because I'll bet I'm guessing accurately that most female caregivers to Ancient Ones (and, most of these caregivers are females) with dementia are peri-menopausal. The violent hormone fluctuations of menopause are famous for screwing around with a person's mental functioning. So is stress. So is frustration. So is lack of sleep. So is hit-or-miss nutrition. So is depression. Interestingly, all these problems are also common for parents who are not menopausal; and, who often complain, anecdotally, about the feeling that they are "losing" their "minds"; which focuses serious scrutiny on Dr. Vitaliano's question, cited from The Tangled Neuron post, "How can you take care of someone else when you're having your own cognitive problems?"
Perhaps we should ask a few single mothers how they do it. How about a mother with a couple (or more) kids and a full time job and a spouse who also works fulltime? How about a stay-at-home Mom who is home schooling?
I'm the only caregiver I know who has never worried that I might develop dementia later in life, even though I have a history, unspectacular as it is, of dementia on both sides of my family. My attitude is, I might, I might not, no way for me to know this now for sure and, anyway, can't do much about it, now, either, even if I did know, so fuggedaboudit. Why didn't my couple of years of mental lapses scare the bejesus out of me, especially since, during this time my mother experienced her most critical health problems, so far, thus, it was important that my mind function in its superior range? I realized that when I was under the gun to perform mentally, specifically when my mother was being mishandled by the medical-industrial complex, my mind was more than up to the task of dealing. Thus, I surmised, apparently a healthy mind under pressure kicks back in, regardless of the presence the stressors that typically lower mental functioning. It might even be possible that experiencing all these stressors actually trained my mind to work better when stress was at its highest and most focused and superior mental performance was important. I discovered this all of a piece during one particular crisis, my mother's low sodium episode that is documented from the last week in July through the first couple of weeks in August, 2004, in this journal's archives. In a couple of posts during that time, pre-diagonsis, I expressed grave concern about my ability to handle yet another medical-industrially-involved health crisis in my mother's life and hoped that the problem would subside on its own. Once I had to engage with Medicine, though, out of nowhere my Super Caregiver cape arrived and I was a force with which to be reckoned. Surprised the shit out of me. I expected the worst from this episode going in, all conditions were set for an absolutely horrible experience I knew would brand me as a failure of a caregiver, and yet...well, let me tell you in my past words.
Research of the type discussed in The Tangled Neuron post cited above is important. We need to know what's going on with our caregivers, ALL our caregivers. We need to wonder why, we need to consider options for solving problems, WE NEED TO PAY ALL KINDS OF ATTENTION TO ALL OUR CAREGIVERS. We also need to be careful to note the positives as well as the negatives because, it seems, as in math, "an even number of negatives makes a positive". We need to count on this at least as much as we fear that being a caregiver in "negative" circumstances might turn us into "negative" version of ourselves.
I am here, Oh Caregiver, to tell you that even when you think you don't have it in you, even when you know that with your next step you're going to fall into The Caregiver Abyss and take your care recipient with you, YOU CAN COUNT ON YOURSELF. You don't even need to believe you can count on yourself. You can, in fact, be absolutely convinced of the opposite. That cognitive-problem-beset mind of yours simply isn't going to listen to your beliefs, your fears or Dr. Vitaliano when they are at cross purposes to what your mind needs to do. I'm living proof that you can count on this. - As well, know this: While it appears that lots of research is coming through right now, since our focus has turned to caregiving for Ancient Ones, that highlights the negatives of this experience while it's happening, remember, there are good reasons in this commercialized society of ours for caregiving to be downgraded to a dangerous activity. You simply can't make nearly as much money off caregivers who aren't convinced that they are endangering themselves by caregiving. Remember, as well, statistics are like crayons...you can draw any kind of picture you want out of them. A little gray here, a little black there and, presto, you've got a "problem" that needs a commercial "solution".
A while back I wrote a pointed response to some literature I received when I registered with the NFCA. It was a response to the overwhelmingly negative slant of the literature that provoked me to realize, care for caregivers is further off than we think. Despite all our present attention to the caregiver situation, our nationally negative attitude toward caregiving grants caregivers only two choices for how to negotiate their job:- Curious psycho-spiritual exercises designed to promote a positive outlook, and;
- the advice, "Know that you're being irreparably damaged, go get help [Which you'll probably need to buy and could very well put you in hock for the rest of your life but isn't your life worth lifelong indentured servitude to credit companies?] and if you don't, well, you can only blame yourself. We warned you."
- I know, I know, it's important to be aware of the negative. It's also, though, important to put the negative in context. Sometimes, in context, the negative turns out to be the detour you take to get to the positive. This isn't something that this nation (at least), apparently, is ready to understand and incorporate. How do I know this? Of all the research I've read on the consequences of caregiving for Ancient Ones, with or without dementia, the article published in Caregiver.com is the only positive article I've read. Granted, I don't look for these articles. However, isn't it insteresting that in not looking for these articles, simply coming across them serendipitously and reading them, all but one emphasized the negative consequences, and in a way that leads the reader to believe that she's doomed? Listen to me, Caregiver, when I tell you: YOU ARE NOT DOOMED. I KNOW THIS BECAUSE I'M DOING THIS JUST LIKE YOU ARE, GOING THROUGH THE SAME THINGS YOU ARE, AND I'M NOT DOOMED.
Whew. Glad that's over.
Later.
Comments:
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originally posted by Deb Peterson: Fri Jul 14, 05:28:00 PM 2006
Gail--Thank you for taking the time and effort to write this. I think the caregiving phenomenon puzzles the cultural soothsayers: there's little money in it (as you mention), there's no way to measure "productivity" because, at least when the recipient is an Ancient One, you don't cure them or prevent death, and because the impetus for it goes counter to so many of the "healthy" commandments we see in the media (eg take care of yourself, etc.). And because of this, we may not even know what questions to ask caregivers in order to assess the positive side of the experience.
I was unprepared for all the pressures on me (from different sources) to move my mother to a care facility. I think most of these sources would look at me and see someone who is tired and stressed, and they want to remedy that, for my good. But I'm not a masochist or a saint--I happen believe that my mother should be in her own home, and I am able (because I'm single and live nearby) to enable her to do that for a time. If I had kids, or lived far away, I might not be able to do that for her. Obviously I'm acting on certain principles I hold and I'm fortunate enough to be able to do it without totally reconfiguring my life. We each have a particular combination of ideals and practicalities to work with, and sometimes finding that fulcrum--where one balances the other and directs your path--is the ultimate satisfaction.
And as we've talked about often, we get something from the deal, too. I have a different relationship with my mother than I've ever had--sometimes frustrating and sometimes rewarding. I also face what I thought I'd never be able to face in my life, and I deal with it. Sometimes badly and sometimes well. But often when I've had some idle time--driving home, for example--I realize that this period in my life is changing me in a big way--I can't tell you how, exactly, but I know that it's a watershed, one I never would have predicted and "what does not destroy me makes me strong."
Gail--Thank you for taking the time and effort to write this. I think the caregiving phenomenon puzzles the cultural soothsayers: there's little money in it (as you mention), there's no way to measure "productivity" because, at least when the recipient is an Ancient One, you don't cure them or prevent death, and because the impetus for it goes counter to so many of the "healthy" commandments we see in the media (eg take care of yourself, etc.). And because of this, we may not even know what questions to ask caregivers in order to assess the positive side of the experience.
I was unprepared for all the pressures on me (from different sources) to move my mother to a care facility. I think most of these sources would look at me and see someone who is tired and stressed, and they want to remedy that, for my good. But I'm not a masochist or a saint--I happen believe that my mother should be in her own home, and I am able (because I'm single and live nearby) to enable her to do that for a time. If I had kids, or lived far away, I might not be able to do that for her. Obviously I'm acting on certain principles I hold and I'm fortunate enough to be able to do it without totally reconfiguring my life. We each have a particular combination of ideals and practicalities to work with, and sometimes finding that fulcrum--where one balances the other and directs your path--is the ultimate satisfaction.
And as we've talked about often, we get something from the deal, too. I have a different relationship with my mother than I've ever had--sometimes frustrating and sometimes rewarding. I also face what I thought I'd never be able to face in my life, and I deal with it. Sometimes badly and sometimes well. But often when I've had some idle time--driving home, for example--I realize that this period in my life is changing me in a big way--I can't tell you how, exactly, but I know that it's a watershed, one I never would have predicted and "what does not destroy me makes me strong."
originally posted by Bailey Stewart: Fri Jul 14, 08:02:00 PM 2006
I'm fortunate in that my mother's doctor has not pushed for a nursing home. He knows, and I know, that my mother has done so well because she is in her home - to have moved her would have made the disease progress much faster (we've only had problems in the last three months of a 5 year run). I was also fortunate in that I am single with no children and was able to stay in the home with her, and had a part-time job with a boss who is very understanding about the whole situation.
I do have to say that there is one negative - no health insurance means that I have not had the important medical care that I've needed - 5 years without pap smears or mammagrams (with a history of breast cancer in the family - not mom, but extended); no dental - and my teeth are crumbling. Physically, I'm a mess. I also came in to this clinically depressed, so it's done nothing by exacerbate the problem. Will I be okay mentally when it's done? I don't know - you've given me hope about that. Will it make me stronger? I think so - I'm holding on to that. Good post.
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I'm fortunate in that my mother's doctor has not pushed for a nursing home. He knows, and I know, that my mother has done so well because she is in her home - to have moved her would have made the disease progress much faster (we've only had problems in the last three months of a 5 year run). I was also fortunate in that I am single with no children and was able to stay in the home with her, and had a part-time job with a boss who is very understanding about the whole situation.
I do have to say that there is one negative - no health insurance means that I have not had the important medical care that I've needed - 5 years without pap smears or mammagrams (with a history of breast cancer in the family - not mom, but extended); no dental - and my teeth are crumbling. Physically, I'm a mess. I also came in to this clinically depressed, so it's done nothing by exacerbate the problem. Will I be okay mentally when it's done? I don't know - you've given me hope about that. Will it make me stronger? I think so - I'm holding on to that. Good post.
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