Wednesday, February 7, 2007
One last bit of sermonizing...
...(I come by this genetically, it seems): I'm more than well aware, I am painfully aware, of how many of our elders are caught in the grips of progressive, debilitating dementia that is, currently, considered the Alzheimer's type, especially considering that their caregivers are primarily the people who are journaling online about their elder caregiving experiences. I can't help but wonder, though, about what must be the millions of people who are aging, in the way of my mother, through the experiences of Ancient health and Dementia-Lite, and their caregiving families and friends. I think we're apt to ignore those caregivers to Ancients who continue to have a sense of themselves, as we become involved in the stories of those who are losing their loved ones to severe dementia.
It's become apparent to me, over the last few months, that we are ignoring the plight of what to do about the grandparents/parents who remain sure of who they are, despite their increasing inability to negotiate the demands of life, in favor of those who are now ensconced in what we currently consider to be worst case scenarios. How many Ancients like my mother, who have not forgotten everything and who still have will enough to not want to be disconnected from family, are languishing in facilities next to those who have forgotten everything, including autonomic function, simply because our society is not economically or socially prepared to consider Ancienthood a legitimate stage of life? Truth is, despite all the online blogs about severe dementia and Alzheimer's, all the caregivers I know in-the-flesh (and, I know more than a few) are taking care (or have taken care) of parents and grandparents who are traveling paths parallel to my mother's. These are the paths, I think, that truly call into question our economic and societal assumptions about and ignorance of old age. We're coming closer and closer to the answer to the question, "What to do about Grandma when she's no longer Grandma?" The question we seem to be ignoring is, "What do we do about Grandma if she insists on remaining Grandma, even as her ability to operate independently and successfully in life diminishes?" The answer doesn't lie in our awe over the 96 year old who continues to work in the world or our despondence over the 83 year old who has become obliterated in the neurological tangles and gum of dementia. We need to pay more attention to the middle ground. The reason it's in the middle is that it's the axis around which most of our elders rotate. At present, in our society, it is as though this middle ground doesn't exist. We forget it, I'm afraid, at peril to our own axes and revolutions.
It's become apparent to me, over the last few months, that we are ignoring the plight of what to do about the grandparents/parents who remain sure of who they are, despite their increasing inability to negotiate the demands of life, in favor of those who are now ensconced in what we currently consider to be worst case scenarios. How many Ancients like my mother, who have not forgotten everything and who still have will enough to not want to be disconnected from family, are languishing in facilities next to those who have forgotten everything, including autonomic function, simply because our society is not economically or socially prepared to consider Ancienthood a legitimate stage of life? Truth is, despite all the online blogs about severe dementia and Alzheimer's, all the caregivers I know in-the-flesh (and, I know more than a few) are taking care (or have taken care) of parents and grandparents who are traveling paths parallel to my mother's. These are the paths, I think, that truly call into question our economic and societal assumptions about and ignorance of old age. We're coming closer and closer to the answer to the question, "What to do about Grandma when she's no longer Grandma?" The question we seem to be ignoring is, "What do we do about Grandma if she insists on remaining Grandma, even as her ability to operate independently and successfully in life diminishes?" The answer doesn't lie in our awe over the 96 year old who continues to work in the world or our despondence over the 83 year old who has become obliterated in the neurological tangles and gum of dementia. We need to pay more attention to the middle ground. The reason it's in the middle is that it's the axis around which most of our elders rotate. At present, in our society, it is as though this middle ground doesn't exist. We forget it, I'm afraid, at peril to our own axes and revolutions.
Comments:
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Originally posted by Patty McNally Doherty: Thu Feb 08, 04:53:00 PM 2007
You are exactly correct. This isn't just about the physical health of the elderly, it's about their rightful place in our society, in our culture. I believe most humans on the planet find it alarming that the elderly are sinking to such an incredibly low/non-existent level and yet there seems to be no way to stop it. In order for them to sink, though, some form of support or infrastucture must have crumbled. What would that have been? It must have happened quite silently, unnoticeably, over many years.
How did elders lose their value? And if they lost it, who gained it?
Alzheimer's doesn't make it worse, it just made it more noticeable to me. I would have NEVER bothered to deal with the plight of the elderly if my father hadn't gotten sick and I hadn't gotten so pissed off at how shitty he was treated. By EVERYONE. My father didn't have to deal with a world that rejected him, I did. And it SUCKED. I took it very personally. I don't like to be lied to, I don't like to get second rate service and I REALLY don't like to be ignored. I was able to fight for his care and respect. I simply demanded it - from EVERYBODY. And I developed a reputation for being blunt, to the point, and merciless when I felt he was being neglected or mistreated or ignored. It's a role no one would want to assume, it just had to be done by somebody and I happened to be the person it fell to. I got help but I fought for it, tooth and nail, and I knew my rights and knew my father's rights and was willing to be considered a royal pain in the ass by anyone who dealt with him. I started out being nice, diplomatic and smart. I was naïve. I ended up being stunned by the dishonesty, the incompetence and the gross lack of oversight of the elderly in America. I'm not naïve, I'm not very nice, and I'm smarter. Screw diplomacy, the elderly need the cavalry!
Aging parents are a challenge that falls squarely in grown children's laps. Some of us understand, while we don't have answers, we will hunt for them. And what we find on that hunt will tell us more about our world than we probably want to know. Others don't like having things land in their lap - no matter who or what or why it is.
In your post, you mention revolution.
I hope, with my dying breath, I raise a fist wherever it is I wind up - be it in a nursing home, or at the pathetic rate we're able to effect action from our politicians, under an overpass somewhere.
Originally posted by Karma: Fri Feb 09, 06:34:00 PM 2007
I've been learning the lesson recently to try to envision being a caregiver in ways that doesn't drain my life and/or completely consume it but to take care of my Mom and myself at the same time. One thing that helped me stop freaking out about the worst case scenario thing was some advice from the Alzheimer's Association family person that Mom will still have ways of giving me signals of what she wants. This is all a lesson in trying to be in the moment and nuture all of the important people in my life.
Good post. I miss your comments on my blog.
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You are exactly correct. This isn't just about the physical health of the elderly, it's about their rightful place in our society, in our culture. I believe most humans on the planet find it alarming that the elderly are sinking to such an incredibly low/non-existent level and yet there seems to be no way to stop it. In order for them to sink, though, some form of support or infrastucture must have crumbled. What would that have been? It must have happened quite silently, unnoticeably, over many years.
How did elders lose their value? And if they lost it, who gained it?
Alzheimer's doesn't make it worse, it just made it more noticeable to me. I would have NEVER bothered to deal with the plight of the elderly if my father hadn't gotten sick and I hadn't gotten so pissed off at how shitty he was treated. By EVERYONE. My father didn't have to deal with a world that rejected him, I did. And it SUCKED. I took it very personally. I don't like to be lied to, I don't like to get second rate service and I REALLY don't like to be ignored. I was able to fight for his care and respect. I simply demanded it - from EVERYBODY. And I developed a reputation for being blunt, to the point, and merciless when I felt he was being neglected or mistreated or ignored. It's a role no one would want to assume, it just had to be done by somebody and I happened to be the person it fell to. I got help but I fought for it, tooth and nail, and I knew my rights and knew my father's rights and was willing to be considered a royal pain in the ass by anyone who dealt with him. I started out being nice, diplomatic and smart. I was naïve. I ended up being stunned by the dishonesty, the incompetence and the gross lack of oversight of the elderly in America. I'm not naïve, I'm not very nice, and I'm smarter. Screw diplomacy, the elderly need the cavalry!
Aging parents are a challenge that falls squarely in grown children's laps. Some of us understand, while we don't have answers, we will hunt for them. And what we find on that hunt will tell us more about our world than we probably want to know. Others don't like having things land in their lap - no matter who or what or why it is.
In your post, you mention revolution.
I hope, with my dying breath, I raise a fist wherever it is I wind up - be it in a nursing home, or at the pathetic rate we're able to effect action from our politicians, under an overpass somewhere.
Originally posted by Karma: Fri Feb 09, 06:34:00 PM 2007
I've been learning the lesson recently to try to envision being a caregiver in ways that doesn't drain my life and/or completely consume it but to take care of my Mom and myself at the same time. One thing that helped me stop freaking out about the worst case scenario thing was some advice from the Alzheimer's Association family person that Mom will still have ways of giving me signals of what she wants. This is all a lesson in trying to be in the moment and nuture all of the important people in my life.
Good post. I miss your comments on my blog.
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