My series of reviews on The Alzheimer's Project
    My review of the Momentum in Science episodes and 14 of the 15 (the supplemental on The Demoe Family: Early Onset Alzheimer's Genetics still hasn't been uploaded to the HBO site) supplemental films is here at Open Salon.
    My review of the Caregivers episode is here at Open Salon.
    Now Mom and I can go to bed.
    In her words, "It's about time."
    Later.
- posted by Gail Rae @ 04:29  0 comments   email  this post

 
I guess it's no longer true that I don't feel my mother with me.
    Tonight, I feel her here with me as strongly as if she were sitting in her rocker, leafing through her tabloids, turning to chat with me now and then, or respond to something I mention to her...
    ...I'm sitting on the floor working on my computer, a warm cup of decaf spiced with a dash of rum, a couple dashes of pungent pumpkin pie spice and cream instead of half & half to give it that "toddy" feel...
    ...she's sipping on a cup of cocoa which she refused earlier in the evening with a dismissive, "It's too sweet," but, now, it's the witching hour, 0300, we should both have been long in bed but we're not, it's a good time for cocoa...
    ....she leans toward me, smiling slyly, and says, "Now, if our neighbors across the street get up to go to the bathroom in the middle of the night, glance out their window and see our lights blazing at this hour, they'll think..."
    "...we're having a party!" I quickly interject...
    ...she chuckles and winks at me. "Aren't we?!?"...
    ..."We must be," I agree, "why else would we be up at three in the morning?!?"
    ..."You know," she says, turning to gaze out the cathedral windows, "I don't know why, I've always loved this time of night..."
    ..."So have I," I say...before I continue typing...
    ...ah, I miss you, Mom, you're here, I can feel you, you're presence is making me smile, and I miss you, and you're here, and I miss you...
- posted by Gail Rae @ 03:00  2 comments   email  this post

 
Late breaking information!
    In case you're curious to know more about the life of Josephine Mickow and her daughter, featured on The Alzheimer's Project: The Memory Loss Tapes, the daughter publishes on a blog, Maple Corners, as "Annie". It's multifaceted, not strictly a "caregiver's blog" (whatever that means), forthright and there's more Art of Alzheimer's, as well as an example of Josephine's Pre-Alzheimer's Art. The pictures Annie takes of their area are worth the click, alone. Some of her recent posts contain interesting reactions to she and her Mom being featured on HBO's The Alzheimer's Project.
    I really like her outlook, her honesty and the pastoral (in the larger sense and without the idealized, romantic overtones) quality of her blog, which I suspect reflects from facets of her and her mom's lives.
    Later.
- posted by Gail Rae @ 12:55  0 comments   email  this post

 
My intention, all along...
...has been to review all episodes of the series of programs under the HBO umbrella title The Alzheimer's Project. Before I discovered Open Salon last week, my plan was to write them all here; which I more or less did with the first review of the first program.
    Since discovering Open Salon, in order not to duplicate myself, as of the review for last night's program Grandpa, Do You Know Who I Am?, I'm writing them all over there. I will maintain links to those reviews over here as I publish them. The link for the review for the second episode is here.
    Don't worry, I'll be back soon!
    Later.
- posted by Gail Rae @ 09:55  0 comments   email  this post

 
Forgive my giddiness...
...a few moments after I published a post on my nascent Open Salon blog, it was labeled as an Editor's Pick! I began blogging over there less than a week ago. Today's post is only my second. My intention was (and is) to write about a variety of subjects, not necessarily my mother's and my adventure (as I've been doing exclusively here), although I hadn't excluded that possibility. After watching The Memory Loss Tapes episode of the HBO series, The Alzheimer's Project last night and posting on it here, because I was so impressed with it and am aware of how few visitors I receive at this journal, I couldn't rest until I'd written a review of it at my Open Salon blog, incorporating some of my immediately previous Mom & Me post but amending, adding to, subtracting from and rewriting a lot of it, in order to encourage further interest in the series. Since that is only my second post at Open Salon, I was astonished that it was so quickly noticed and selected as an Editor's Pick.
    Forgive, dear reader's my excitement and shameless self-promotion. I'm so surprised and pleased I couldn't help it!
    Later.

P.S. at 1610 MST:  And, later it is! I just noticed the article mentioned above has been placed on the cover of Open Salon! I'm stoked!
- posted by Gail Rae @ 13:46  2 comments   email  this post

 
I've made a commitment to watch The Alzheimer's Project...
...running on HBO, starting today, through May 12, 2009. I committed to watching it with misgivings. Here's much of what I wrote to Mona of The Tangled Neuron (whom I consider my lay dementia expert) almost a month ago when I first saw the advertisement for the series:

    HBO has been advertising a program that will begin airing May 10, 2009, called The Alzheimer's Project. They've been running fairly lengthy commercials about it, all of which have been bothering me, primarily because of the information I've picked up from your site. First, let me review the blurbs for you. I've transcribed them from the ads exactly as they are broadcast:

1. It's being called a documentary and will be airing three nights in a row starting May 10, 2009. The show is being billed as:
   "An unprecedented four part series
   and multimedia event
   that depicts hope
   on the horizon"
2. Some of the quotes on the usual ad, without, unfortunately, identification of the people who are speaking, are:
   • "There's been an exponential increase in our understanding of what causes Alzheimer's Disease, how we can target it and how we can treat it."
   • "It really is miraculous that within a short period of time we know a lot about the disease."
   • "We do have the research scientists, we do have the knowledge and I think we can beat Alzheimer's Disease."
   • "Many exciting discoveries {word sounds like "aim"} the root causes of the disease and therefore imply enormous therapeutic potential."
   • "The biology and the clinical understanding are, as we speak, getting put together at last. And we're gonna see real treatments out of it, as a result of that. It's a magic time."
   • "We are at the brink of controlling one of the major diseases affecting world health."
3. Yet another commercial for the show broadcasts the following quotes, the first two of which are identified with the speaker:
   • "We think that the HBO series will have the potential to put us to a tipping point, to get to that stage where the American public is talking about Alzheimer's in a different way." --Harry Johns, President/CEO of the Alzheimer's Association
   • "It's also critical that they understand the great promise and progress that have come in research over the past ten or fifteen years, which has really been, uh, something unimaginable not so many years ago." --Dr. Richard J. Hodes, Director of the National Institute on Aging
   • "Today Alzheimer's is rapidly becoming a leading health issue affecting more than five million Americans. But there is now a genuine reason to be optimistic about the future."

    I'll be watching the series, I'm sure. I'm curious to see what the "caregiver" segment has to say...I'm always leery of TV programs that talk about and feature caregivers. However, because of your website and, as well, because of Patty's activism on the Alzheimer's front, the above blurbs and quotes immediately set off some alarms...for me:

1. My understanding is that we aren't actually that close to understanding, let alone treating, let alone curing dementia of any type, let alone all types. Is my understanding correct? If so, WHY IS THE PROGRAM MAKING IT SOUND LIKE WE'VE PRACTICALLY CURED ALL TYPES OF DEMENTIA???? What advantage would anyone in or out of the field gain from misrepresenting the issue like this??? Isn't it, in fact, more dangerous than anything else if this program is insinuating something that is downright wrong?
2. What is so wrong with the way "the American public" is talking about Alzheimer's that it needs to be different? Over the years that I've been aware of Alzheimer's, the "talk" has undergone some stunning transformations, including that those with Alzheimer's are, more and more, speaking on their own behalf and, as well, their relatives and caregivers are speaking differently about it than was true even 5 years ago (making an exception, of course, for Living in the Labyrinth by Diana McGowan, which is probably the great-great grandparent of the current "talk" and was published in 1993, yeow, I thought it was older than that; shows you how far the talk has REALLY come!).
3. How do you think, as an aggregate, the serious, thoughtful professionals who work in this field and whom you feature on your website would react to a program such as this that is being advertised as harboring, essentially, the "good news" that we are about to be saved from dementia?
4. Am I completely off base in my concerns about how this program is being billed and what it "promises" to contain? Are we really close to Never Never Alzheimer's Again Land?

    Since I'm writing off the cuff tonight, so to speak, and haven't been in touch with Mona regarding this particular post, I won't quote from her response but I think I can, without breaching confidentiality or copyright, say that she was guarded, too, but hopeful.
    Then, very recently, it clicked with me that the series was to begin on Mother's Day. I left a comment on her announcement of the series at The Tangled Neuron mentioning that I'd just realized this and expressed my misgivings about this being a good day for such a series to debut, for more than a few reasons, all of which, I'm sure, are obvious and mentioning that it will be interesting to see what sort of viewer stats the show will garner. Mona moderates her comments so that one of mine hasn't been published yet.
    Although I'd marked all parts of the show for DVR recording so that I could rewatch and scour if I felt the need, even up to a minute before the first part, The Memory Loss Tapes, aired, I was, well, similarly guarded but hopeful.
    Well, I watched the first part this evening and, I have to say, despite my prejudicial misgivings, I was impressed. The portrayals of all the people, those with dementia and those in their lives, sparkled with humanity, I thought. I was thrilled with how the editing revealed the eccentricity and individuality of each of the primary subjects (those with dementia), including how core aspects of their lifelong characters continued to broadcast loud and strong through their experiences of dementia. I think the editors got a little carried away with Yolanda Santomartino's hallucinations and forgot to give us a solid idea out of what sort of life her dementia experience evolved. Despite this blip, I was fascinated that she recognized herself in photographs but, when she looked at herself in the mirror, that wasn't her, that was "Ruth". We never imagine ourselves exactly as we are...and it was eye opening to see this universal human trait taken to the limit.
    It was very obvious to me that not one of these people's core characters was "lost" in dementia, even as some, particularly Joe Potocny, expressed the feeling of losing themselves or, like Woody Geist, clearly expressed the feeling that they didn't know where they were or where they were going. Yet, it was obvious (except for Yolanda, and, I think that was a fault of the editing) that each featured subject and all the peripheral subjects in the facilities were clearly individuals with histories and idiocyncrasies that shone through their dementia. I was relieved to see this. As you know if you've been a regular reader of my journals, one of my pet peeves with the portrayal of dementia is the tendency to focus on what, or who, has been "lost", rather than focusing on the person who exists in the here and now.
    I think my "favorite", if that word can be used, they were ALL stunning and I smiled, grinned, even chuckled, sometimes, throughout the entire film as these people expressed themselves with such obstinate individuality, was Josephine Mickow, The Queen of Scat. What a force! Her relentless creativity refused to budge in the face of her dementia. I was astonished and heartened that Josephine and her daughter communicated very well, in the moment. It was as if, as Josephine was creating her scat language to replace the language she originally absorbed and was forgetting (creativity stripped to its core, I think), her daughter learned it. That's what superior caregivers do...they follow more than lead. I thought her daughter appeared to be suffering from compassion fatigue as the film was made. It was especially obvious with her reaction to the stone incident, blaming herself for her mother putting the stone in her mouth. I could tell, though, despite this (we ALL have our bouts with compassion fatigue if we care for an Ancient and/or Infirm One for any length of time) she was the perfect companion for her mother and had created the uniquely perfect environment for her. I sensed, too, that she knew this, did it with utter love, bore it with striking humility and, in the periphery of the lens that was trained on her, I could tell she had a sense of self-possessed pleasure to have been able to do this for her mom.
    Woody, a man born with an amazing voice and a gentle soul, and Cliff, a born showman and magician, both of whom were experiencing fairly advanced dementia (although the film also made it clear, through demonstration rather than verbal instruction, that it is wildly inaccurate and unfair to make any assumptions about what to expect from those with dementia based on words such as "mild", "intermediate" or "advanced", which is another reason I am pleased with this film), mentioned how lucky they and "we" are. Woody mentioned it several times. I hope this makes people stop and think once more before they lump everyone with dementia into The Land of the Lamented and Lost.
    I couldn't help it: From the obvious clues given in the show about the location of Joe Potocny's blog, I searched and found it; that immediately preceding link will take you there. If you're curious to see how he has been doing since March of last year, when he was filmed, give it a click. His last post was a week ago. In addition, through immediately previous posts, both his frustration and his fighting spirit are clearly evident.
    I noticed a humble link to the right of the page introducing The Memory Loss Tapes episode. It's a link to a Viewer's Guide for the episode. The last page of the Guide (which is alternately titled "Discussion Guide") makes it clear that it was created for "screening and discussion panel[s]". I wasn't aware, from any of the many ads I'd seen for the series, that such panels were being organized. No matter. Aside from several pages of general information about Alzheimer's, it includes "Discussion Questions and Conversation Starters" that I imagine would be helpful in focusing on pertinent details of dementia and helping to observe and think about it more clearly. Some of the questions, as well, prompt the viewer to examine their own feelings about dementia, old age and caregiving. I actually found it interesting to privately contemplate my responses to some of the questions. I notice that all the episodes have Viewer's Guides. I haven't checked the others out. I intend to do so after watching each of the episodes. Don't overlook this resource if you have watched or are planning to watch the films.
    This first film in the series amazed me. It was so much more and so much better than I expected. Although I'm still leery of the rest, I am prepared, now, to be surprised and hope I am similarly pleased with all the episodes. You'll be hearing more from me on this series...
    ...later.
- posted by Gail Rae @ 23:58  0 comments   email  this post