Wednesday, September 21, 2005
Night and Morning.
This morning a Treasured Prescott Friend mentioned that another friend, whose mother is in her 90's and living in an assisted living facility, had an experience so disconcerting that she needed to discuss it with her friends. She visits her mother so frequently as to be considered a daily presence in her mother's life. Some days ago she engaged her mother in an animated, hour long conversation about mutual relatives, friends and concerns. As she was leaving her mother expressed her gratitude for the visit and asked, "...and what was your name, again, dear?"
I couldn't help but muse out loud with my friend about this, since she and I were discussing types and levels of dementia in the elderly. She and I compared notes about my and her mother's dementia (her mother died some years ago after living with her and her husband). We talked about how both our mothers have mistaken us for contemporaries, sometimes older friends or relatives, sometimes, well, we're not sure who we are/were to our mothers. I mentioned that although I'm often not sure what relationship my mother thinks I am to her, I'm always "Gail" and I sense that my parameters in her life are settled, even though I may be "Gail" the daughter, the roommate, a cousin or a friend; once (and only once, so far) I was her mother. It occurred to me as we talked that maybe with the Ancient Demented, familiarity breeds more familiarity. I suggested, while assuring my friend that I was in no way criticizing the arrangements under which our other friend's mother lives, that in order not to be the "...and who are you, dear?" person in a beloved Ancient One's life one has to be with the Ancient One when she retires at night and awakens in the morning. The more I contemplate this the more convinced I am that this is probably the only reason my mother never asks who I am.
By way of explanation: At this stage of my mother's life her night dreams are so vivid and memory-filled that when she awakens it is as though her entire being has been transported to the area and among the people highlighted in her dreams. She's never been disoriented when awakening from the sleep that fosters these dreams but I've often and briefly considered that this period is partially responsible for her episodic belief that we live in Iowa or South Dakota and are geographically situated close to the doorsteps of a variety of her living and dead relatives. I think this is why she is more apt to believe, immediately after awakening from either deep or light sleep, that many of her dead relatives are alive and coming to visit or available to be visited. This morning during the conversation with my friend I realized that I am always at her bedside before and after her dream travels, bidding her good night or good morning, receptive to the news of her dreams and, by default, a reminder that she remains in reality (whatever reality she's traversing) as a member of a family of which I am the ever present representative.
My friend also advanced another provocative outlook. She said that although her mother's demented behavior was much like my mother's, she never really considered that her mother had "dementia". I think this is a healthy, productive attitude when dealing with Ancient Ones whose mentality has turned creative. I think it is this consideration which causes me to label my mother's dementia "creative mentality". While it is true that lately I've been using the word "dementia" and its forms more often, I've been doing this to a purpose: My intention is to destigmatize the word and change what it implies. Too often, I think, we forget that dementia has many forms and isn't always apparent within those who may exhibit an episode of forgetfulness here and there, nor is it always progressive. Because of the popularization of advanced Alzheimer's dementia we freak when we hear the word and imagine only a frighteningly progressive and debilitative state that we believe spells certain mental and physical doom for anyone who forgets anything if they are of or beyond "a certain age". I can report with confidence that dementia in the elderly is as varied and unpredictable as the variety of plants that may or may not push themselves above the soil line after every seasonal monsoon soaks the wild part of our back yard. From summer to summer I can be heard to exclaim, "Wow, I didn't know we had this in our yard," or, "Oh, cool, this is back, I thought it had died out last year!"
The human brain is an amazing organ and becomes even more amazing as it ages. It is not only the keeper but the creator of our reality and deserves to be respected as such. I think it would do us well to spend more time attentively listening to the productions of Ancient brains to discover what they are revealing about the individual brain keeper, reality and the state of being human, thus spending less time fearfully labeling these productions and imagining horrors we believe are implicit in the development of mentally creative constructions. I think the key to this attitude is to consider that Ancient brains don't shrivel reality, they expand upon it. Sometimes this can be frightening and depressing for both the Ancient One and the observer, especially if the Ancient One retains one foot in our species' agreed upon social reality. I refuse to believe, though, that fright and depression are necessary reactions to Ancient dementia. I think that the proper attitude toward such flights is marvel. I'm not suggesting that we stop trying to figure out how to keep our loved ones with us in our agreed upon reality as firmly and as long as possible. What I am saying is that at this time much of the dementia of Ancient Ones is inevitable and irreversible. We are a species that has evolved socially and craftily enough to allow these flights and foster the safety of those who soar into Mental Fancy. We do our species a disservice when we shrink from this atmosphere and those who take to its skies.
I couldn't help but muse out loud with my friend about this, since she and I were discussing types and levels of dementia in the elderly. She and I compared notes about my and her mother's dementia (her mother died some years ago after living with her and her husband). We talked about how both our mothers have mistaken us for contemporaries, sometimes older friends or relatives, sometimes, well, we're not sure who we are/were to our mothers. I mentioned that although I'm often not sure what relationship my mother thinks I am to her, I'm always "Gail" and I sense that my parameters in her life are settled, even though I may be "Gail" the daughter, the roommate, a cousin or a friend; once (and only once, so far) I was her mother. It occurred to me as we talked that maybe with the Ancient Demented, familiarity breeds more familiarity. I suggested, while assuring my friend that I was in no way criticizing the arrangements under which our other friend's mother lives, that in order not to be the "...and who are you, dear?" person in a beloved Ancient One's life one has to be with the Ancient One when she retires at night and awakens in the morning. The more I contemplate this the more convinced I am that this is probably the only reason my mother never asks who I am.
By way of explanation: At this stage of my mother's life her night dreams are so vivid and memory-filled that when she awakens it is as though her entire being has been transported to the area and among the people highlighted in her dreams. She's never been disoriented when awakening from the sleep that fosters these dreams but I've often and briefly considered that this period is partially responsible for her episodic belief that we live in Iowa or South Dakota and are geographically situated close to the doorsteps of a variety of her living and dead relatives. I think this is why she is more apt to believe, immediately after awakening from either deep or light sleep, that many of her dead relatives are alive and coming to visit or available to be visited. This morning during the conversation with my friend I realized that I am always at her bedside before and after her dream travels, bidding her good night or good morning, receptive to the news of her dreams and, by default, a reminder that she remains in reality (whatever reality she's traversing) as a member of a family of which I am the ever present representative.
My friend also advanced another provocative outlook. She said that although her mother's demented behavior was much like my mother's, she never really considered that her mother had "dementia". I think this is a healthy, productive attitude when dealing with Ancient Ones whose mentality has turned creative. I think it is this consideration which causes me to label my mother's dementia "creative mentality". While it is true that lately I've been using the word "dementia" and its forms more often, I've been doing this to a purpose: My intention is to destigmatize the word and change what it implies. Too often, I think, we forget that dementia has many forms and isn't always apparent within those who may exhibit an episode of forgetfulness here and there, nor is it always progressive. Because of the popularization of advanced Alzheimer's dementia we freak when we hear the word and imagine only a frighteningly progressive and debilitative state that we believe spells certain mental and physical doom for anyone who forgets anything if they are of or beyond "a certain age". I can report with confidence that dementia in the elderly is as varied and unpredictable as the variety of plants that may or may not push themselves above the soil line after every seasonal monsoon soaks the wild part of our back yard. From summer to summer I can be heard to exclaim, "Wow, I didn't know we had this in our yard," or, "Oh, cool, this is back, I thought it had died out last year!"
The human brain is an amazing organ and becomes even more amazing as it ages. It is not only the keeper but the creator of our reality and deserves to be respected as such. I think it would do us well to spend more time attentively listening to the productions of Ancient brains to discover what they are revealing about the individual brain keeper, reality and the state of being human, thus spending less time fearfully labeling these productions and imagining horrors we believe are implicit in the development of mentally creative constructions. I think the key to this attitude is to consider that Ancient brains don't shrivel reality, they expand upon it. Sometimes this can be frightening and depressing for both the Ancient One and the observer, especially if the Ancient One retains one foot in our species' agreed upon social reality. I refuse to believe, though, that fright and depression are necessary reactions to Ancient dementia. I think that the proper attitude toward such flights is marvel. I'm not suggesting that we stop trying to figure out how to keep our loved ones with us in our agreed upon reality as firmly and as long as possible. What I am saying is that at this time much of the dementia of Ancient Ones is inevitable and irreversible. We are a species that has evolved socially and craftily enough to allow these flights and foster the safety of those who soar into Mental Fancy. We do our species a disservice when we shrink from this atmosphere and those who take to its skies.
Tuesday, September 20, 2005
Soon after that last post, yesterday...
...the day was lost to frustration and depression for me. It started soon after she awoke, while I was trying to get her "up" for taking an errand trip with me to the grocery store. she was "joking" about how it wasn't necessary, she's seen the store, blah, blah, blah. Then, as she was moving off the bed, she faltered a bit. I came to her aid but, I don't know, something about the incident set me off. I castigated her thus [paraphrased from memory]: "You know what? You shouldn't joke your way out of outings. This faltering? It's because you're refusing to move. Because it is so exhausting for me to try to get you to do exercises that I only do it, anymore, when I'm in a really, really good mood. It takes so much of my energy to get you to move that it regularly exhausts me. It exhausts me just to try to get you out of bed in the morning. It exhausts me to try to keep you up at least 10 hours a day and, lately, I've been giving up so much that your up part of the day has dwindled to 8 hours, if that. And now you're faltering. And, overtly, I'm at fault because I can't motivate you to move, but you're at fault because you continue to think you don't need to continue to move. Listen, Mom. You are, officially, now, a danger to yourself whenever you move. You stand up and you're a danger to yourself. You take a step and you're a danger to yourself. Why the hell do you think I make sure I've got my nose up your ass whenever you're up?!?
"And, you know what, I've had it. I'm taking a vacation today. You don't want to move? Don't move. You want to sleep yet another day away? Have at it. All I'm saying is, if you continue this happy-idiot (yes, I used that phrase) lethargy, thinking that it doesn't take movement to keep moving safely, you're not far away from not being able to move at all."
From that point on I was stony silent for the rest of the day. It wasn't fun for either of us. I got lots of errands in during her nap, though, because she slept like a log.
I still had some of that frustration and exhaustion left over this morning and barked at her a little but it's been fading for the last few hours. This morning before she awoke I did a lot of deep thinking about why I seem to be more suseptible to these moods during this time of year and realized something that I wish I'd realized long before: Fall and winter are my favorite times of year. They are known to be not only my most productive but my most social (which is saying something, considering that I'm not terribly social anyway). This has been true for decades. I have, too, for decades, associated the internal rush of energy and inspiration and amiability that typically floods into my life at this time with these seasons and look forward to it. Last year and this year, though, I've been laboring under the conditions that are required by intense caregiving. Without observing what had been going on, I've allowed these conditions to adversely affect my usual fall/winter internal ambiance. When I figured this out this morning I could feel myself relax. I doubt that I'll be able to alleviate the conditions but I seem to have inherited the same operational system that often influences my mother to change when necessary: Become aware of the need for change and change begins to happen, often without conscious effort. I can't predict how I will modulate myself in order to remain an effective caregiver and allow myself to enjoy my Dark Season Surge. I now know, though, that I will and I'm looking forward to the process, however subconscious it is.
I had to explain to my mother this afternoon why it is that although I spend a lot of time trying to agitate her into movement I also sometimes refuse movement to her in which she offers and/or wants to indulge. The situation: I asked my mother if she wanted some coffee.
She confirmed that she did then said, waving me away with her hand, "I'll get it."
"No, Mom, I'll get it for you."
"But you always want me to move, then you don't let me move!"
I know this is what it looks like to her. "Mom, if you want to go into the kitchen with me while I make your coffee you can. I've invited you to move around the house with me any number of times. Is that what you want?"
"Doesn't seem necessary if you won't let me make my own coffee."
I sighed and reseated myself on the couch. "Mom, let me explain to you why you no longer make you're coffee."
"Good," she said, stern as the school teacher she's been. "I'd like to know that."
"A couple of years ago you started exhibiting a few behaviors when making your coffee that caused problems, sometimes dangerous problems. First, you could no longer remember that some of our cups shouldn't be used in the microwave either because they had metal decoration [gold and silver] or they became hot in the microwave. You burned yourself hands more than once, dropped cups and broke them, and sparked the microwave. Second, you could no longer remember the difference between one minute and ten minutes on the microwave. Third, you could no longer remember to remove the spoon you used to stir your coffee into the water from the cup when you used the microwave. Fourth, you decided that you could sprinkle coffee from the jar into your cup instead of spoon it and often ended up using a good quarter of a jar in one cup, didn't realize this and went ahead and made the coffee that you refused to drink. Fifth, when I instituted using the electric water pot you couldn't hear the water whistling and we went through a couple of pots very quickly because you burned them out. You also burned out one of our microwaves with spoons in cups."
By this time Mom was shaking her head in shock as though I was describing someone else's behavior.
"So, Mom, that's why you don't make your own coffee anymore. Some of these reasons are also reasons why I won't let you cook anymore. Are you suffering because I won't let you do these things?"
"No, no. I never liked to cook anyway. But I would like to be able to make my own coffee. I'd have to move to do that."
"You can move when I do it, Mom. I'm not stopping you from going into the kitchen with me. It's common for me to invite you in there. Do you want to go and watch me make your coffee now?"
She waved away the suggestion. "Doesn't seem necessary."
My difficult thirty six hours have also caused me to consider that perhaps we're entering another period in which my mother will noticeably slow, perhaps even lose a significant amount of the little physical strength she still has. I'm definitely going to get a prescription for a cane when we go to the doctor in late October/early November. Maybe I can head off some of that strength loss at the pass if she feels more confident moving around here. Then again...
"And, you know what, I've had it. I'm taking a vacation today. You don't want to move? Don't move. You want to sleep yet another day away? Have at it. All I'm saying is, if you continue this happy-idiot (yes, I used that phrase) lethargy, thinking that it doesn't take movement to keep moving safely, you're not far away from not being able to move at all."
From that point on I was stony silent for the rest of the day. It wasn't fun for either of us. I got lots of errands in during her nap, though, because she slept like a log.
I still had some of that frustration and exhaustion left over this morning and barked at her a little but it's been fading for the last few hours. This morning before she awoke I did a lot of deep thinking about why I seem to be more suseptible to these moods during this time of year and realized something that I wish I'd realized long before: Fall and winter are my favorite times of year. They are known to be not only my most productive but my most social (which is saying something, considering that I'm not terribly social anyway). This has been true for decades. I have, too, for decades, associated the internal rush of energy and inspiration and amiability that typically floods into my life at this time with these seasons and look forward to it. Last year and this year, though, I've been laboring under the conditions that are required by intense caregiving. Without observing what had been going on, I've allowed these conditions to adversely affect my usual fall/winter internal ambiance. When I figured this out this morning I could feel myself relax. I doubt that I'll be able to alleviate the conditions but I seem to have inherited the same operational system that often influences my mother to change when necessary: Become aware of the need for change and change begins to happen, often without conscious effort. I can't predict how I will modulate myself in order to remain an effective caregiver and allow myself to enjoy my Dark Season Surge. I now know, though, that I will and I'm looking forward to the process, however subconscious it is.
I had to explain to my mother this afternoon why it is that although I spend a lot of time trying to agitate her into movement I also sometimes refuse movement to her in which she offers and/or wants to indulge. The situation: I asked my mother if she wanted some coffee.
She confirmed that she did then said, waving me away with her hand, "I'll get it."
"No, Mom, I'll get it for you."
"But you always want me to move, then you don't let me move!"
I know this is what it looks like to her. "Mom, if you want to go into the kitchen with me while I make your coffee you can. I've invited you to move around the house with me any number of times. Is that what you want?"
"Doesn't seem necessary if you won't let me make my own coffee."
I sighed and reseated myself on the couch. "Mom, let me explain to you why you no longer make you're coffee."
"Good," she said, stern as the school teacher she's been. "I'd like to know that."
"A couple of years ago you started exhibiting a few behaviors when making your coffee that caused problems, sometimes dangerous problems. First, you could no longer remember that some of our cups shouldn't be used in the microwave either because they had metal decoration [gold and silver] or they became hot in the microwave. You burned yourself hands more than once, dropped cups and broke them, and sparked the microwave. Second, you could no longer remember the difference between one minute and ten minutes on the microwave. Third, you could no longer remember to remove the spoon you used to stir your coffee into the water from the cup when you used the microwave. Fourth, you decided that you could sprinkle coffee from the jar into your cup instead of spoon it and often ended up using a good quarter of a jar in one cup, didn't realize this and went ahead and made the coffee that you refused to drink. Fifth, when I instituted using the electric water pot you couldn't hear the water whistling and we went through a couple of pots very quickly because you burned them out. You also burned out one of our microwaves with spoons in cups."
By this time Mom was shaking her head in shock as though I was describing someone else's behavior.
"So, Mom, that's why you don't make your own coffee anymore. Some of these reasons are also reasons why I won't let you cook anymore. Are you suffering because I won't let you do these things?"
"No, no. I never liked to cook anyway. But I would like to be able to make my own coffee. I'd have to move to do that."
"You can move when I do it, Mom. I'm not stopping you from going into the kitchen with me. It's common for me to invite you in there. Do you want to go and watch me make your coffee now?"
She waved away the suggestion. "Doesn't seem necessary."
My difficult thirty six hours have also caused me to consider that perhaps we're entering another period in which my mother will noticeably slow, perhaps even lose a significant amount of the little physical strength she still has. I'm definitely going to get a prescription for a cane when we go to the doctor in late October/early November. Maybe I can head off some of that strength loss at the pass if she feels more confident moving around here. Then again...
Monday, September 19, 2005
Mom seems to be getting into the habit...
...of retiring then arising again an hour or so later and staying up for a good hour or so. It's homey and nice. These periods are shared quiet time for us: She drinks a cup of coffee, I drink a cup of tea; she sits in her rocker and reads her magazines, I work on cataloguing more past journal entries; we discuss items of interest that we encounter; if I've forgotten to rub down her legs I do this, as I did last night; we talk about possibilities for the following day, then she retires.
I've been meaning to comment on entries in arrears as I continue cataloguing, but I can't seem to pull myself away from the momentum of following our past days, one major episode to another. My intention is, now, to continue cataloguing until I'm caught up on this journal, then construct the Table of Contents. I'm making notes on things upon which I want to comment such as:
I've received all the books I mentioned ordering in a previous post. I've skimmed them, although I don't imagine I'll get around to reading them until I've finished cataloguing. I read something interesting and relieving in the Sick to Death book about how the profile of chronic disease due to organ failure in the elderly closely follows the pattern Mom is following: Extended periods of good to excellent functioning of the organ(s) in question followed by a usually sudden and fatal health crisis. Interesting. My intention is to seek permission from the authors of these books to quote passages I think are important. I'll report on how the permission seeking process goes.
I just noticed that the url to my picture of Mom isn't translating now that the post is archived. Guess I'd better fix that.
Later.
I've been meaning to comment on entries in arrears as I continue cataloguing, but I can't seem to pull myself away from the momentum of following our past days, one major episode to another. My intention is, now, to continue cataloguing until I'm caught up on this journal, then construct the Table of Contents. I'm making notes on things upon which I want to comment such as:
- The build-up to her blood transfusion;
- The build-up to her low sodium episode, which I'm now cataloguing (I'm in mid July of 2004);
- How circumstances are generally different than now and how they're surprising similar. Not that I'm expecting plunges in her present good, steady health but I'm astounded that, overall, except for blips here and there, her health and activity profile has remained the same over the last couple of years; this gives me a shot of confidence. I think the only aspect that has changed is my aspect: I've clearly become much more relaxed about her inactivity, even though I continue to harbor some minor anxiety about her muscles weakening.
I've received all the books I mentioned ordering in a previous post. I've skimmed them, although I don't imagine I'll get around to reading them until I've finished cataloguing. I read something interesting and relieving in the Sick to Death book about how the profile of chronic disease due to organ failure in the elderly closely follows the pattern Mom is following: Extended periods of good to excellent functioning of the organ(s) in question followed by a usually sudden and fatal health crisis. Interesting. My intention is to seek permission from the authors of these books to quote passages I think are important. I'll report on how the permission seeking process goes.
I just noticed that the url to my picture of Mom isn't translating now that the post is archived. Guess I'd better fix that.
Later.
Sunday, September 18, 2005
Nothing unusual about yesterday...
...except that, at my mother's request, after breakfast I stopped taking stats for the day. The circumstances are recorded over at today's post for Mom's Daily Tests and Meds. If everything seems okay today when I awaken her (planned at 1100) I'll probably not take stats today, either. Although I assume that stress does not affect her blood sugar, I know it affects her blood pressure and I'll bet if I manage to keep myself from fastening that damned wrist cuff on her today her blood pressure will remain in the two 2.5 mg lisinopril range all day.
We have another plan, a trip to a grocery for some essentials. I'm hoping she'll accompany me but I'm not going to push. As usual, she expressed enthusiasm yesterday but may not today.
I've got a bug up my ass that I want to mention before I continue cataloguing for the Table of Contents. Yesterday I was leafing through old magazines and pamphlets in an attempt to reduce some of our constant clutter and throw away those I know we'll not again access. I wish I could remember in which particular magazine/tabloid/newsletter I saw the following (which is a paraphrase from memory): "Don't feel guilty if you aren't in a position to provide care for your parents during their later years. There are plenty of fine services out there ready to provide adequate care to your elderly parents. Use them. Not only are they better prepared to handle the job, your time with your elderly parents will be freed to enjoy their company without irritation."
On first reading I dismissed it with a curt, vaguely critical, "Yeah, right." This isn't the first time I've read something along these lines. After I'd dumped the lot at the recycling bin a mile down the street certain trigger phrases continued to wander, in black-on-white serif type, across my internal line of vision: "plenty of fine services"; "better prepared to handle the job"; "time...will be freed to enjoy"; "without irritation"; and, the ultimate trigger phrase, "Don't feel guilty".
I've fallen into that "don't feel guilty" trap a number of times in my life. Until recently I've not questioned Maya Angelou's observation, popularized by Oprah Winfrey, that, "...if you'd known better, you'd've done better...". Yesterday, though, my niggling, usually dismissed doubts about this advice were finally caught in the "headlights" (thank you Alan Watts) that are my conscious attention. I think, at least in this nation, we need to popularize feelings of guilt: For our miserable record as caregivers to not only the elderly but to children; for our willingness to believe that "they'll understand," either when "they" are older or "they" are dead; for our refusal to acknowledge that, no, professional care in this country for the elderly is not "fine", in fact it's barely available at an "adequate" level; for thinking that "adequate" is "okay"; for not acknowledging that guilt is usually triggered when we have, indeed, known better but haven't acted out of higher motives; for thoughtlessly heaping feelings of guilt on our already overburdened caregivers who often aren't, themselves, the guilty party but are frantically trying to make amends for the guilty parties who are assuaging themselves with such phrases as, "don't feel guilty, if you'd known better you'd've done better, one of these days they'll understand".
And what about the decision not to care for or visit the Ancient and Infirm unless you're sure the experience will be pleasant [initial discussion here]? This was the underlying reason for a family putting their matriarch in a nursing home for her final days, as cited by a fairly recent article in NYT entitled Will We Ever Arrive at the Good Death? in which the family was quoted as saying that in a residential hospice they could "just focus on loving her" without the hassle of trying to take care of her. Something I've learned about love since taking care of my mother: It is impossible to experience informed love, which is the deepest kind of love, without caring for someone when their chips are down. While I peripherally sympathize with the busy families of modern society finding the possibility of caring for an intense needs individual more than they can imagine bearing and fearing that this will somehow adversely affect their ability to love that individual, my experience of caring for my mother, as well as my lack of experience and, for that matter, awareness in caring for my father when he was ill-to-death, informs me that, of the two experiences, being my mother's caregiver, especially during the intense, messy, hellacious times, is directly responsible for my unusually expanded ability to love her and the rewards of such a love. In the face of this personal development I even, sometimes, wish I had been more available to my father as he wilted and my mother struggled to take care of him. Although he and I are at peace with one another and were at the time of his death, I can't help but continue to wonder what I would have discovered about him and how much more informed, therefore inclusive, my love for him would have become had I made myself available to him on his very difficult (both for him and my mother as his caregiver) final journey.
I believe that every society's first conscious priority should be caregiving. I believe that caregiving is best done within a group of individuals (whether family or community) with close ties to one another that has the blessing and the full emotional and survival support of the society within which that group functions. I believe that when a society demeans caregiving by assigning it to one unsupported, undervalued, overburdened sub-group within that society the entire society is at risk for exactly the diseases of the soul from which U.S. society suffers: The inability to embrace life at all its stages; the inability to consider caregiving the fundament of everything we do as humans; the inability to understand, practice and support the detail and the gifts of superior caregiving; the inability to recognize that "individual responsibility" and "individual initiative" in a species as relentlessly and dependently social as ours are oxymorons.
I believe it is time for all individuals in our society to acknowledge guilt, feel guilt, then respond to our higher social motives and do something, besides concocting feel-good Madison Avenue propaganda, to truly assuage the caregiver guilt to which we are all subject. Each of us already knows better. It's time for us to do better.
We have another plan, a trip to a grocery for some essentials. I'm hoping she'll accompany me but I'm not going to push. As usual, she expressed enthusiasm yesterday but may not today.
I've got a bug up my ass that I want to mention before I continue cataloguing for the Table of Contents. Yesterday I was leafing through old magazines and pamphlets in an attempt to reduce some of our constant clutter and throw away those I know we'll not again access. I wish I could remember in which particular magazine/tabloid/newsletter I saw the following (which is a paraphrase from memory): "Don't feel guilty if you aren't in a position to provide care for your parents during their later years. There are plenty of fine services out there ready to provide adequate care to your elderly parents. Use them. Not only are they better prepared to handle the job, your time with your elderly parents will be freed to enjoy their company without irritation."
On first reading I dismissed it with a curt, vaguely critical, "Yeah, right." This isn't the first time I've read something along these lines. After I'd dumped the lot at the recycling bin a mile down the street certain trigger phrases continued to wander, in black-on-white serif type, across my internal line of vision: "plenty of fine services"; "better prepared to handle the job"; "time...will be freed to enjoy"; "without irritation"; and, the ultimate trigger phrase, "Don't feel guilty".
I've fallen into that "don't feel guilty" trap a number of times in my life. Until recently I've not questioned Maya Angelou's observation, popularized by Oprah Winfrey, that, "...if you'd known better, you'd've done better...". Yesterday, though, my niggling, usually dismissed doubts about this advice were finally caught in the "headlights" (thank you Alan Watts) that are my conscious attention. I think, at least in this nation, we need to popularize feelings of guilt: For our miserable record as caregivers to not only the elderly but to children; for our willingness to believe that "they'll understand," either when "they" are older or "they" are dead; for our refusal to acknowledge that, no, professional care in this country for the elderly is not "fine", in fact it's barely available at an "adequate" level; for thinking that "adequate" is "okay"; for not acknowledging that guilt is usually triggered when we have, indeed, known better but haven't acted out of higher motives; for thoughtlessly heaping feelings of guilt on our already overburdened caregivers who often aren't, themselves, the guilty party but are frantically trying to make amends for the guilty parties who are assuaging themselves with such phrases as, "don't feel guilty, if you'd known better you'd've done better, one of these days they'll understand".
And what about the decision not to care for or visit the Ancient and Infirm unless you're sure the experience will be pleasant [initial discussion here]? This was the underlying reason for a family putting their matriarch in a nursing home for her final days, as cited by a fairly recent article in NYT entitled Will We Ever Arrive at the Good Death? in which the family was quoted as saying that in a residential hospice they could "just focus on loving her" without the hassle of trying to take care of her. Something I've learned about love since taking care of my mother: It is impossible to experience informed love, which is the deepest kind of love, without caring for someone when their chips are down. While I peripherally sympathize with the busy families of modern society finding the possibility of caring for an intense needs individual more than they can imagine bearing and fearing that this will somehow adversely affect their ability to love that individual, my experience of caring for my mother, as well as my lack of experience and, for that matter, awareness in caring for my father when he was ill-to-death, informs me that, of the two experiences, being my mother's caregiver, especially during the intense, messy, hellacious times, is directly responsible for my unusually expanded ability to love her and the rewards of such a love. In the face of this personal development I even, sometimes, wish I had been more available to my father as he wilted and my mother struggled to take care of him. Although he and I are at peace with one another and were at the time of his death, I can't help but continue to wonder what I would have discovered about him and how much more informed, therefore inclusive, my love for him would have become had I made myself available to him on his very difficult (both for him and my mother as his caregiver) final journey.
I believe that every society's first conscious priority should be caregiving. I believe that caregiving is best done within a group of individuals (whether family or community) with close ties to one another that has the blessing and the full emotional and survival support of the society within which that group functions. I believe that when a society demeans caregiving by assigning it to one unsupported, undervalued, overburdened sub-group within that society the entire society is at risk for exactly the diseases of the soul from which U.S. society suffers: The inability to embrace life at all its stages; the inability to consider caregiving the fundament of everything we do as humans; the inability to understand, practice and support the detail and the gifts of superior caregiving; the inability to recognize that "individual responsibility" and "individual initiative" in a species as relentlessly and dependently social as ours are oxymorons.
I believe it is time for all individuals in our society to acknowledge guilt, feel guilt, then respond to our higher social motives and do something, besides concocting feel-good Madison Avenue propaganda, to truly assuage the caregiver guilt to which we are all subject. Each of us already knows better. It's time for us to do better.
