Monday, May 7, 2007
guilt, caretaker, eating, drinking, dying
Sounds like another movie directed by Ang Lee, doesn't it, only probably not much comedy in this one, unless you count irony. It's a string of search terms someone punched into Google which led the searcher to my site.
An intriguing string, which is why I'm mentioning it; sounds like it encompasses just about everything to do with caretaking/caregiving. I couldn't help but ponder each word in the string. Following are my off-the-cuff thoughts:
Later.
An intriguing string, which is why I'm mentioning it; sounds like it encompasses just about everything to do with caretaking/caregiving. I couldn't help but ponder each word in the string. Following are my off-the-cuff thoughts:
guilt: Everyone who is a caregiver, including professional caregivers, and everyone who knows a caregiver, sometimes including the care recipient, experiences guilt over the situation. The caregiver is often afflicted with almost non-stop guilt, not being able to ever avoid the situation. Most of the guilt clusters around the following concerns:What a movie this string would make! Hopefully my generation is becoming so aware of caregiving that several of us will be inspired to make movies about caregiving and be bold enough to call them movies about caregiving.caretaker:
- Am I doing enough for my care recipient;
- Am I doing enough for myself;
- Am I the cause of others I know not being particularly interested in becoming involved;
- Am I explaining enough to whomever is taking over care of my recipient for me that I won't return to a recipient who is on the brink of a health crisis precipitated by neglect, mishandling and/or injury;
- Why can't I feel constantly good about what I'm doing;
- Why can't I feel constantly good about having someone take care of me?
eating:
- What is a caretaker, anyway;
- Why are landscaping caretakers so much more, hmmm..., well, happy about their accomplishments and satisfied at the end of the day than I am;
- Am I taking too much care, or too little, of my care recipient or myself;
- Is there such a thing as "too much care";
- What if someone for whom I suspect I will be taking care in the future no longer wishes to be "independent", despite society insisting that she is capable of independence;
- How reliable is society's determination versus my future care recipient's determination regarding the desirability of her independence;
- Am I a "bad" caretaker if I can't take it, anymore, and turn my care recipient over to someone else, like professionals;
- Is caretaking "bad" for my caretaking relative;
- Is it "bad" for the care recipient?
drinking:
- Am I stress eating because I'm a caregiver;
- Is stress eating "bad" for me;
- Am I feeding my care recipient the "right" foods;
- If my care recipient is very old, strong willed, continues to have a hearty appetite and insists on foods that her doctors may not recommend, is that okay;
- What are the "right" foods;
- How important is it to stick to the "right" foods under these circumstances;
- How important is the food=pleasure equation to the very old and/or very ill;
- If my care recipient is in facilitized care and her institutional diet is clearly abhorrent to her to the point that she isn't getting enough nutrition, can I do anything;
- Why is institutionalized food, particularly for the aged and infirm, so bad and does it have to be?
dying:
- Am I stress drinking for desperately needed and little provided respite because I'm a caregiver;
- If it provides a measure of relief, is it really "bad" for me;
- What about hydration and my care recipient...who can absolutely tell me what is proper hydration for the elderly and/or infirm;
- Will these hydration directives change as my care recipient ages and her health conditions change;
- If my care recipient wants to drink alcoholic beverages, is it okay;
- If my care recipient is an alcoholic and still able to provide herself with her preferred method of self-anesthesia, what should I do;
- What can I do, if this is the case?
- Will caregiving contribute to an earlier death for me than I otherwise could have expected;
- How am I going to know when my care recipient is approaching or in the "active dying phase";
- What do I do when this happens;
- Do I even want to be present as my care recipient dies;
- Is it okay if I don't want to be present;
- Can I trust hospice services to ensure a comfortable, pain free "active dying phase";
- Have I somehow, accidentally contributed to an earlier death for my care recipient than would be true if my care recipient were under someone else's care;
- After my care recipient's death, will I be so overwhelmed with grief and exhaustion that I will have trouble carrying on;
- If, after her death, I am relieved, what does this say about me;
- How will my attitudes toward death change after having accompanied my care recipient through to her death?
Later.
Comments:
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Originally posted by Patty McNally Doherty: Mon May 07, 11:27:00 PM 2007
Patty Doherty emailed me with the following at 2119, 5/7/07. Although she didn't indicate the post to which she'd tried to attach it, I assume it is this one, so I am appending it here (grh):
I tried to post a comment on your blog this evening and failed. It got me thinking about the term caregiver and caretaker. God, I hate both those words. Anyway, here is my comment:
For a long time, I have been uncomfortable with the term "caregiver". And I'm also not happy with the term "caretaker". For me, the terms imply some sort of job skill, or know how, or experience when in fact, we have none. We wing it for the people we love.
When I think about it, I was a friend to my father as he aged through Alzheimer's, when he needed one the most. Loyal and true. I can relate better to the term "friend" and all it implies and confers.
And it's less burdensome than "caregiver/taker". Being a friend is awesome and wonderful, having a friend is awesome and wonderful as well.
It has a healthy balance to it - the real give and take of caring.
Originally posted by Rosa: Tue May 08, 01:38:00 AM 2007
First of all, thank you Gail for your comment on my blog, you are a wealth of information.
I don't like the terms caretaker or caregiver either. I just say, "I take care of my mother." and can elaborate on it as much or as little as I need to, depending on the situation or who is doing asking. Caretaker makes me think of hired help or something like that, caregiver sounds almost wishy-washy.
"Why are landscaping caretakers so much more, hmmm..., well, happy about their accomplishments and satisfied at the end of the day than I am" I was about to write that the landscapers see a finished project at the end of the day, but we do, too. At the end of the day, if your Ancient One (or in my case the Woman of the House)is healthy, feeling good and doing well, then that is the finished result. Right now I'm still finishing up for the day, got to go wake her up for a glass of something or other.
Originally posted by Gail Rae: Tue May 08, 11:10:00 PM 2007
When Patty emailed me with the comment she was having trouble posting, after I posted it I responded to her comment in an email, in part thanking her for initiating a much needed conversation about two words "caregiver" and "caretaker", which have become so loaded in the last several years that no one, I think, can hear or utter the words without having some kind of emotional reaction. Since it looks as though a conversation has been launched with the joining of a second participant, Rosa, I thought it might be appropriate to continue it by quoting, from my email to Patty (I'm not a disinterested observer in this conversation, after all) my feelings, at this time (since they have changed and likely will continue to evolve), regarding the words "caregiver" and "caretaker":
You might be surprised to find that I, in the main, agree with you about the words "caregiver" and "caretaker", which is why I, more often, now, refer to myself as my mother's companion or companion/caregiver. You'll note I continue to append and use "caregiver", though. Truth is, probably because of how long I've been doing it and how concentrated I've been at it, although my mother and I are great friends, since we were so before she called me to accompany her through her last years, "friend" isn't enough for me. I've never had a friend who has ever done (or probably ever will do) for me what I now do for my mother, and I've had (and continue to have) some wonderful, deep friendships. There really is no other word that communicates much of what I do for her, now, than "caregiver" or "caretaker"...and, because I care for her so intimately, it has come to have intimate connotations for me, even though I am aware of how removed it seems to others. But, it doesn't communicate everything. I guess that's why I wrote that essay, I Am My Mother's Lover. That's a good word...but would be wholly misunderstood without me passing out copies of the essay every time I use it!
Funny thing...no one ever questions the word "parent"...much of what I do for my mother, now, falls under the purview of "parent", but I am obviously not her parent, and "child" doesn't yet insinuate what I now do for her, because few children do what I'm doing...although I wish it did. It's a hard one, I agree.
I'm so glad you opened up the conversation on my website. I hope people notice your comment and begin to consider what those of us who love our Ancient Ones with intimate companionship and care should be called. Bill Thomas, of "What Are Old People For?" fame, made up a name for those who care for Ancient Ones: Shahbazim (plural); Shahbaz (singular). Eden Alternative facilities use these terms. He's got a nice little story behind the name, but, you know, I'm not comfortable using them, either. I am, though, comfortable using "final companion/caregiver"...so far...but, I haven't been comfortable with the "caregiver/taker" part of it in the past and am only marginally comfortable with it now. We need the conversation I hope your comment initiates.
It would be interesting to survey other languages, especially those of cultures that encourage largely multi-generational homes, and see what people who do what I do and what you have done are called in those languages...and what the attendant meanings are.
Originally posted by Karma: Wed May 09, 02:31:00 PM 2007
This is a great list and gets at a lot of the issues that we deal with. I think you and Patty are getting at some important issues - although I think the issue of what role we play is really important AND how do we take care of our selves as we take care of our parents.
Originally posted by Patty McNally Doherty: Fri May 11, 08:58:00 AM 2007
The way I took care of myself was to become an advocate, an outspoken advocate. Watching my father receive horrendous care from professionals in the field, from memory clinics to nursing homes, I could no longer sit silently without feeling almost complicit. It's like watching a little kid, with no defenses, get bullied and beaten on a playground. Who among us would be able to sit back and say, "Oh, it's just the way it's done. The bullies mean well. They're doing the best they can."
No, instead we would stand up, speak up and take action. It was no different for me when it came to my father. We, as a society, are not prepared or even aware of how devastating Alzheimer's disease is. It's hidden in back bedrooms and nursing homes. There is a stigma attached to this disease - what of one's legacy? Who wants to be remembered for peeing in the flowerpot on the patio? Who wants the world to know an elder adult has deteriorated to the point of forgetting tennis balls aren't for eating or that bananas won't work like a screwdriver? Our once brilliant elders are transformed into dusty relics of the past, sitting in wheelchairs in nursing homes, staring at the floor. We hide this disease, we protect our elders' legacies and we change nothing.
It is good to have a conversation about what we call ourselves. It would be even better to have a conversation about what we are to do before this disease is pounding on our door.
Originally posted by Novabella: Tue May 22, 02:55:00 PM 2007
Your guilt list is my life and I have the ulcers to prove it. I do not live with my parents but I support my mom to support my dad. Well, and I hope I support him too. I am constantly nagged by the feeling that I am not doing enough for either of them. That it's a terrible thing if I don't spend at least part of every day off with them. I am losing them, but I am also losing me. And my sisters, warm and lovely as they are, are really waiting for me to "solve" everything.
Post a Comment
Patty Doherty emailed me with the following at 2119, 5/7/07. Although she didn't indicate the post to which she'd tried to attach it, I assume it is this one, so I am appending it here (grh):
I tried to post a comment on your blog this evening and failed. It got me thinking about the term caregiver and caretaker. God, I hate both those words. Anyway, here is my comment:
For a long time, I have been uncomfortable with the term "caregiver". And I'm also not happy with the term "caretaker". For me, the terms imply some sort of job skill, or know how, or experience when in fact, we have none. We wing it for the people we love.
When I think about it, I was a friend to my father as he aged through Alzheimer's, when he needed one the most. Loyal and true. I can relate better to the term "friend" and all it implies and confers.
And it's less burdensome than "caregiver/taker". Being a friend is awesome and wonderful, having a friend is awesome and wonderful as well.
It has a healthy balance to it - the real give and take of caring.
Originally posted by Rosa: Tue May 08, 01:38:00 AM 2007
First of all, thank you Gail for your comment on my blog, you are a wealth of information.
I don't like the terms caretaker or caregiver either. I just say, "I take care of my mother." and can elaborate on it as much or as little as I need to, depending on the situation or who is doing asking. Caretaker makes me think of hired help or something like that, caregiver sounds almost wishy-washy.
"Why are landscaping caretakers so much more, hmmm..., well, happy about their accomplishments and satisfied at the end of the day than I am" I was about to write that the landscapers see a finished project at the end of the day, but we do, too. At the end of the day, if your Ancient One (or in my case the Woman of the House)is healthy, feeling good and doing well, then that is the finished result. Right now I'm still finishing up for the day, got to go wake her up for a glass of something or other.
Originally posted by Gail Rae: Tue May 08, 11:10:00 PM 2007
When Patty emailed me with the comment she was having trouble posting, after I posted it I responded to her comment in an email, in part thanking her for initiating a much needed conversation about two words "caregiver" and "caretaker", which have become so loaded in the last several years that no one, I think, can hear or utter the words without having some kind of emotional reaction. Since it looks as though a conversation has been launched with the joining of a second participant, Rosa, I thought it might be appropriate to continue it by quoting, from my email to Patty (I'm not a disinterested observer in this conversation, after all) my feelings, at this time (since they have changed and likely will continue to evolve), regarding the words "caregiver" and "caretaker":
You might be surprised to find that I, in the main, agree with you about the words "caregiver" and "caretaker", which is why I, more often, now, refer to myself as my mother's companion or companion/caregiver. You'll note I continue to append and use "caregiver", though. Truth is, probably because of how long I've been doing it and how concentrated I've been at it, although my mother and I are great friends, since we were so before she called me to accompany her through her last years, "friend" isn't enough for me. I've never had a friend who has ever done (or probably ever will do) for me what I now do for my mother, and I've had (and continue to have) some wonderful, deep friendships. There really is no other word that communicates much of what I do for her, now, than "caregiver" or "caretaker"...and, because I care for her so intimately, it has come to have intimate connotations for me, even though I am aware of how removed it seems to others. But, it doesn't communicate everything. I guess that's why I wrote that essay, I Am My Mother's Lover. That's a good word...but would be wholly misunderstood without me passing out copies of the essay every time I use it!
Funny thing...no one ever questions the word "parent"...much of what I do for my mother, now, falls under the purview of "parent", but I am obviously not her parent, and "child" doesn't yet insinuate what I now do for her, because few children do what I'm doing...although I wish it did. It's a hard one, I agree.
I'm so glad you opened up the conversation on my website. I hope people notice your comment and begin to consider what those of us who love our Ancient Ones with intimate companionship and care should be called. Bill Thomas, of "What Are Old People For?" fame, made up a name for those who care for Ancient Ones: Shahbazim (plural); Shahbaz (singular). Eden Alternative facilities use these terms. He's got a nice little story behind the name, but, you know, I'm not comfortable using them, either. I am, though, comfortable using "final companion/caregiver"...so far...but, I haven't been comfortable with the "caregiver/taker" part of it in the past and am only marginally comfortable with it now. We need the conversation I hope your comment initiates.
It would be interesting to survey other languages, especially those of cultures that encourage largely multi-generational homes, and see what people who do what I do and what you have done are called in those languages...and what the attendant meanings are.
Originally posted by Karma: Wed May 09, 02:31:00 PM 2007
This is a great list and gets at a lot of the issues that we deal with. I think you and Patty are getting at some important issues - although I think the issue of what role we play is really important AND how do we take care of our selves as we take care of our parents.
Originally posted by Patty McNally Doherty: Fri May 11, 08:58:00 AM 2007
The way I took care of myself was to become an advocate, an outspoken advocate. Watching my father receive horrendous care from professionals in the field, from memory clinics to nursing homes, I could no longer sit silently without feeling almost complicit. It's like watching a little kid, with no defenses, get bullied and beaten on a playground. Who among us would be able to sit back and say, "Oh, it's just the way it's done. The bullies mean well. They're doing the best they can."
No, instead we would stand up, speak up and take action. It was no different for me when it came to my father. We, as a society, are not prepared or even aware of how devastating Alzheimer's disease is. It's hidden in back bedrooms and nursing homes. There is a stigma attached to this disease - what of one's legacy? Who wants to be remembered for peeing in the flowerpot on the patio? Who wants the world to know an elder adult has deteriorated to the point of forgetting tennis balls aren't for eating or that bananas won't work like a screwdriver? Our once brilliant elders are transformed into dusty relics of the past, sitting in wheelchairs in nursing homes, staring at the floor. We hide this disease, we protect our elders' legacies and we change nothing.
It is good to have a conversation about what we call ourselves. It would be even better to have a conversation about what we are to do before this disease is pounding on our door.
Originally posted by Novabella: Tue May 22, 02:55:00 PM 2007
Your guilt list is my life and I have the ulcers to prove it. I do not live with my parents but I support my mom to support my dad. Well, and I hope I support him too. I am constantly nagged by the feeling that I am not doing enough for either of them. That it's a terrible thing if I don't spend at least part of every day off with them. I am losing them, but I am also losing me. And my sisters, warm and lovely as they are, are really waiting for me to "solve" everything.
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