There was an interesting exchange on the Alzheimer’s message boards today.
“In addition to my full-time management job, I teach a Writing I class three mornings a week at the local community college,” Barbara Jane wrote. “My students are usually first-time college students right out of high school. My morning was awful with getting Mom ready for ADC. I lost it and argued with her. Like that helps, arguing with someone in Stage 6 AD, right? As I drove onto campus I thought to myself that my wish for my students is that a cure or preventative is found for AD before they have to start dealing with my generation suffering from it. Growing up I never knew anyone who was dealing with this. Now it seems like everyone my age is dealing with it. Hope it stops with us.”
Now I think that was a nice thought.
I suggested that Barbara Jane have her students imagine what it must be like to have Alzheimer's. And then have them write about it.
But there was a dissenter. A woman named Tracy, who incidentally, has early onset Alzheimer’s, wrote: “That is the stupidest thought I have ever heard of Jim. I have this disease and would not wish it on anyone to even imagine what it is like. They need to spend their energy on preventive measures and cures, etc."
Well, folks, pardon me. But I think Tracy misses the point. It’s especially important for care-givers and the rest of us to imagine what the disease is like. For us to pretend what it must be like to be the patient.
Yes, we have to educate ourselves and learn all the ramifications of the disease. The ins and outs. So that we can help the likes of Tracy through her battle with it. Ain’t easy, I’m sure. So if Barbara Jane’s class of young writers can put their minds and writing abilities to work, maybe they can come away with a better understanding of the disease. That ain’t stupid. It’s downright smart. –Jim Broede
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18 comments:
You know, folks, I'm always intrigued by the response of members of the Alzheimer's message boards Ladies Aid Society to my suggestions. The more they talk, the more I'm convinced that I'm right, and they're wrong. But hey, I acknowledge that they have a right to their opinions. And I understand why some of 'em aren't very good care-givers. They don't even begin to understand the nature of the disease that they are dealing with. That's why some feel repulsed and disgusted -- yes, those are the words they use -- towards their patients, their loved ones. Take the attitude of a woman calling herself Jackieyo. Here's what she had to say:
"Jim,
How about having them imagining what its like to have cancer? They could practice throwing up after their imaginary chemo. Or how about a heart attack? They could clutch their chests and pretend their in pain. Or this would be easy, just a plain old broken leg. They could easily get crutches, and imagine that their underarms hurt so bad that they think there arm is broken too.
"That was not only stupid advice is was downright hurtful. You really know how to be hurtful don't you.
"Now your not only hurtful to the caregivers, your starting on our friends with AD. You poor sick man. You've got nothing better to do now then to pick on our AD friends. Why don't you describe to them how Jeanne was when she had AD, then they'll be able to imagine it more.
"Tell them how she ate, tell them how she forgot, tell them how she swore, tell them how she didn't remember people. Tell them how she might have dribbled her food once in awhile. Tell them how she wet and soiled her pants. Go ahead tell them so now they can really imagine how to imagine that.
"This way if they have one particular person to imagine about, it will be so much easier for them. Tell them all that Jim, and I'm sure they'll be able to write a real nice story about Jeanne, and you can help them imagine real good."
Here's what Betsy, another member of the Ladies Aid Society, thinks of my idea:
"Jim,
How is someone to imagine AD when they have had no experience with it? While you may be attempting to encourage awareness, as usual, your ideas are too far left."
Sounds to me like Betsy thinks it's a political issue. That I'm espousing a left wing point of view. Guess she prefers the right wing. Of course, I think it's wise to educate one's self. About a very devastating disease. Betsy would have us not think too deeply about it. Because that might upset us. --Jim Broede
Alas, a voice of reason and sanity. Comes from Maria Cristina, from Sardinia in Italy. She teaches English and English literature. I like her. Because she has a head on her shoulders. A truly thinking head. Here's what she posted on the Alzheimer's message boards:
"I'm a bit surprised by the remarks expressed by Jackieyo to J. Brode's proposal.The students are young women and men, and maybe some of them have already been in touch with Alzheimer or dementia. But unfortunately even today sick people are not considered in the same way, so everyone can easily imagine the pain provoked by cancer,and the person affected by this terrible disease can have the support and the empathy of everyone, can have the opportunity to share his/ her fears. Mental illness isolates people: society fears every form of such diseases, and sometimes even members of the family run away. So for this reason I don't consider extravagant or hurtful the proposal by Jim: I think that facing a theme of this relevance can help young people to have a more refined sensibility. The chance of treating this topic could start with a movie, for instance, like 'The proof' or 'Iris,' that tells the story of Iris Murdoch, a writer affected by Alzheimer. The stories are moving, I don't believe that necessarily teenagers must be protected by every sad, painful event. They must grow up as women and men who can face unpleasant events in their lives. Of course,I know that like every teacher when I stare at my young pupils I wish for them inside me that life won't mistreat them, but this is another story. Regards. Maria Cristina."
And now jim, you have to resort to leaving your own comments. Aren't you so very proud!! The only thing you have left on here is to "copy" everything you see on the Alz. message board. Good writing jim, good writing. Better start copying something else, because I've got a feeling, your days are numbered.
Anonymous:
My days are numbered? Is that a threat from the Ladies Aid Society? I copy some of the negative comments posted on the Alzheimer's message boards because they were bound to get deleted. They were negative, nasty and hateful, and obviously they violate Alzheimer's Association guidelines. And rightly so. You ladies are losing it. You've let your tempers and your irrational thoughts get the best of you. You make fools of yourselves. That's why I post many of your comments here so that folks can understand what gets deleted by the Alzheimer's administrators. I suggest that you gals simmer down and start acting like real ladies. I could teach you good manners. But you've got to learn to pay attention in class. And quit acting like dunderheads. --Jim Broede
Just visited your blog. I must say, it is not what I expected. On the AA forum, you seem somewhat caring. You are much different here. If you want opinions, I think this blog is no good.
As a free thinker, liberal and well educated atheist woman I am wondering why you feel the need to copy and paste items from Alzheimer's board. Your blog only seems to be a medium to stir up the emotions of people who are already stressed. You may be a free thinker, lover, romantic and idealist but these attributes are going to waste by being such a contrarion. As I am sure are aware, people who constantly espouse their virtues are usually terribly insecure and I am sure this isn't you. The reality is we all do the best we can at any given moment and it would be a better world if we didn't try to tear people down constantly for doing so, in fact it would be better if we were all more empathic. I really believe that you are lacking the empathy that is needed in the forum. People rarely take advice from those closest to them and my guess is that you would be more accepted if you understood this. It really isn't very difficult, just breathe before you respond and say I am sorry you are going through this..it must be really difficult. Your reality with your late wife will not be everyone elses. Just trying to help you out as I am sure you do have something to offer to the forum.
I am sure you have a lot to offer, I'd find a way where it actually does some good.
Anonymous:
I'm a caring fella no matter where I go. But I'm also outspoken. I consider that an attribute. Some folks, don't. That's why I alienate folks from time to time. I thrive on words and thoughts. And if you think this blog is no good -- well, you have a choice. You don't have to return. You don't have to read it. Just say adios. And find something better to read. That won't hurt my feelings. --Jim Broede
Dear well-educated atheist woman:
Please note that I only occasionally copy and paste. Certainly only 1 or 2 percent of the time. I've got over 200 threads I've posted since this blog made it's debut around Aug. 1. It's called broede's broodings. And that's what I'm doing. Brooding. I think in a pleasant manner. And I think I'm doing much good. In my own way. Maybe you'd have me do it in a different way. But that wouldn't be me. If you write a blog, I'd say, let it be you. And if people would rather that you not be you -- well, then tell 'em, that's not your intention. That you like being you, an atheist woman. Some Christians won't like that. They'll want you to find god. Just tell 'em that wouldn't be you. --Jim Broede
P.S. This blog seems to be an attraction. We've exceeded 11,000 hits, and we're well on our way to 12,000. I'm satisfied with the progress. And we'll adapt and change over a period of time. We aren't static.
As a so-called former writer. your ethics are sorely missing. That you would continually abuse your priviledge, of access to a health community dealing with such a devastating disease is reprehensible. These people are facing end-of-life issues with family members, and you exploit them, for your own pleasure. I certainly don't know who "we" is, but I hate to think there are more of "you".
The reason you alienate people is very clear, here. You are a user and abuser.
You are helping no one.
You are fixing nothing.
Outspoken is one thing, common courtesy should still remain.
11,000 hits? No big deal, in the blog world. Means little. Content and response is what matters.
Touche, I acknowledge that people who don't benefit or enjoy reading your blog should stay away. We are, however, responsible for our own actions and choices.
My point is again that I think you could offer a lot more to the community by being a little more accepting and less judgmental. Perhaps, you could make a committment to not post to those that are upset by your comments. Also, not to cut and paste their comments to your blog. Think about how much better those stressed out, overworked, exhausted caregivers would feel. You cannot force your "good vibes" onto them.
I agree in the right to free speech and no doubt it has been diminished under the current administration. However, like all the rights and freedoms we enjoy it is prudent that we use them with discretion. It is apparent that you are hurting these women and you have control over who you chose to "attack". Have you ever thought that maybe they are too exhausted and you might be making it worse? Just my thoughts.
Dear folks, anonymous & otherwise:
I have my own blog. But as for other blogs, I am very selective about which ones I read. Generallly, it has to be a liberal-slanted blog. One that makes me feel good. I read the Alzheimer's message boards daily. And I'm careful to follow the guidelines established by the Alzheimer's Association. If I deviate from the guidelines, I do it in my blog, away from the message boards. And I read something every day. Books. The New York Times. And I write every day. And I try to post what I write in the proper places. Sometimes in my journal. Sometimes in letters. Sometimes on the Alzheimer's message boards. Sometimes in my blog. I find it works. Gives me freedom of expression. With it all being done in the proper places. And all of my writings -- well, they aren't required reading. And that's the way it should be. --Jim
Folks:
I read and listen to all kinds of crap. Daily. Can't help it. That's the nature of the world. Listen to politicians. Turn on the radio or TV and listen to the news or to talk shows. So much of it is crap. Often, if I eavesdrop on a conversation, it's crap. But I don't let that bother me too much. I let it go in one ear and out the other. I've been accustomed to what I should avoid on TV and the radio and in newspapers. I've become selective. Even in choosing my friends and acquaintances. I pick and choose. I've found a comfort level. I'd recommend that we all strive for our own comfort levels. --Jim Broede
On the Alzheimer's message boards today, a woman named Peachy commented:
"Yes, you do have free expression of speech to post whatever you want on YOUR blog. So, why copy and paste stuff from this (Alzheimer's message)board? If you are so intelligent, then you would not need to get stuff off this board and make fun of people who are truly hurting and trying to do the best they can with the cards they have been dealt."
Well, Peachy, you seem to be making the assumption that all of the care-givers posting on the Alzheimer's message boards are doing the best they can. I don't buy into that premise. Some of 'em could be doing a lot better. And that would certainly benefit their patients. That's why I keep raising the issue. In my opinion, some care-givers do harm to their patients. And that's gotta be fixed. And one way we start to get around to a fix is by talking about it. Doesn't do any good to pretend that everybody is doing their best. --Jim Broede
Broede's Broodings said...In my opinion, some care-givers do harm to their patients.
If you think someone is harming their patient, it is your duty to report that, not exploit it.
Anonymous:
I think it's the duty of the inept care-givers to recognize their ineptness and to either become better and qualified, or leave the task to others. But they shouldn't pretend to be doing the job adequately. More of them should police and discipline themselves. For the sake of their patients. If they are honest with themselves, they know they are coming up short. It's no disgrace to admit it. I rather admire some that have admitted it. For their honesty. --Jim Broede
POLICE and DISCIPLINE?? That's how you see it?? How cold! Y'know, Jim, if you have been through all that you claim to have been through, I would think that you, of all people would be a little more understanding of the struggles of caregivers, as they clean up poop, dodge fists, and try to bounce back from the hateful words coming from their Loved Ones. How many years did YOU struggle? Are you so much better?
On one hand, you say, "I think it's the duty of the inept care-givers to recognize their ineptness and to either become better and qualified," and, "More of them should police and discipline themselves. "
THEN you say,"And some care-givers simply aren't up to the task... I think it's the obligation of society to do something about it. "
Which is it? You are stumbling all over your own views.
Dear Anonymous:
It's both. And more. There are multiple ways to address the problem of inept care-givers. Anything that works is fair game. I'm for education. For policing. For self-discipline. I'm for programs that give beleaguered care-givers respite. Time to recuperate. I'm for arresting care-givers who abuse their patients. I'm for licensing care-givers. I'm for a better health care system for dementia patients, and for the mentally ill. I'm for channeling big chunks of our national defense budget into our health care system instead. I'm for more money for research into a cure for Alzheimer's. Hey, get me elected president, and I'll see that these things happen. And I'll get us out of Iraq so fast it'll make your head spin. And I'll see to it that there's a narrowing of the gap between the rich and the poor. But it ain't gonna happen. Because we live in a plutocracy, not a democracy. --Jim Broede
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