Inkwell: Authors and Artists

    
i hope there is some sort of generational shift happening
i.e. that of my mother, which was a generation where most
folks did NOT expect to live to be this old,  if you
did, you had the good longevity genes, etc etc. and of
the generation that was taught 'the great hero doctor
can safe lives!' --- never mind the cost.
theoretically boomers are thinking harder about the
tradeoffs, because we -can- expect to live that long ---
but at what costs. and have seen what our parents
go through, what our friends go thru with their
parents, etc etc.
  

    

> a cultural history of chess and chess's
> surprising influence on culture and ideas

Your new book project sounds like it'll be fascinating. Perhaps you can
return to Inkwell when it's published. I bet we could have a rousing
conversation about it, David.

> A lot of people are racing -- RACING -- to come
> up with the right treatment, for humanitarian reasons
> and because there are billions of dollars to be made.

That reminds me of another fascinating dilemma you brought up in "The
Forgetting." I'm paraphrasing a lot of what you wrote, and I don't have
the book in front of me at the moment. So please feel free to correct
anything I happen to misstate.

I understood you to have said that at one time, scientists spent 
inordinate amounts of time and energy writing grants in order to 
finance their research. IOW, instead of doing research they were 
spending time fund-raising. Given that scientists could possibly 
raise money from people interested in the pure science of research, 
or interested in exploring wild, off-the-wall ideas, scientists
sometimes got funding for some unusual research projects.

These days, pharmaceutical companies fund most research. Scientists aren't
freelancers anymore, they work for this or that pharmaceutical company. That
means they don't have to spend time procuring grants. But these companies
are more "bottom line" as far as where they're willing to invest money. They
want success, they want a return on their money and they want it soon.
They're far less likely to put up dough for a research project that's not
already accepted in the scientific community as the best pathway to pursue.

Is this trade-off worth it? Do we stand a better chance of finding medical
remedies if the driving force behind the research funding is the profit
motive?
  

    
cdb, most scientists i know think the answer is 'no, less likely
to come across breakthough innovative stuff' (and btw, the same
mindset has also come to pervade the natl science grant-making
establishment. but that's another story...)
  

    
No offense, Cynthia, but I want to distance myself from that
paraphrasing. That's pretty different from what I wrote. 

You do get to the issue in your last paragraph, the question of a
trade-off between the benefits of public science vs. private science.
Since 1980, American law has allowed researchers to take federal funds
for research AND to subsequently patent their discoveries. The nice
thing is that, without a doubt, the profit-motive has sped up the
transition from discovery to product. The problem, though, is that the
market encourages scientists NOT to share their findings with their
colleagues until after they have a patent and a head-start. 

In a sense, science is being turned upside down. As kids, we were
taught that a fundamental ethic of scientific discovery was that you
raced to share something as soon as you came upon it. Now, they race to
the patent office. 
 
  

    
I have really learned that we all live in our own reality (realities)
from caring for my charges. Would you talk a bit about that as it
relates to an Alzheimer's patient's awareness of the disease as it
progresses? How much should be shared with them, how much should just
be accepted? Also, how much should be shared with their family when
they are in denial?
  

    
Really important issue, Ted. Coming to terms with the the patient's
reality seems to me to be the first big challenge for the caregiver(s).
Many patients who are diagnosed in the early stages will want to know
what's going on, and I think it's usually entirely appropriate to tell
them. They may be able to participate in all aspects of the future
planning.

But others are too far down the road to even understand that there's a
problem, and there's nothing to be gained by forcing this information
down their throats. Whether it has to do with a medical diagnosis or a
family member who has been dead for 30 years, patients cannot be forced
to accept any objective "truths" that they aren't experiencing
themselves as truths. 

So every caregiver I've ever known comes to the realization at some
point that the important thing is to accept patients' own reality, and
to make them comfortable in that reality. This is tough, because it
essentially requires a son or daughter to learn how to lie to their
parent, to treat them like a child who can't handle the truth. That is
a demeaning thing to have to go through, a humiliating thing to accept
that your loved one isn't in your world anymore. But in the Alz world,
it is necessary. The biology of this disease drastically alters
patients' realities. The most persuasive of caregivers cannot change
that biology.

Family members are another story entirely. They are cognitively intact
and have no excuse. They need to be educated, period. Denial is a
human and even a healthy response on a temporary basis. But when family
members -- often geographically distant ones -- refuse to believe that
there's anything really wrong with Mom, they need to be convinced
somehow, so that they can rally and help be a part of the planning for
the future. For starters, I know a book they can read...
  

    
Thanks David, I've been leaving your book and others around for them
to stumble on during their short visits. I wish they were more
receptive, but right now it is just too terrifying for them to accept.
They keep hoping it will just turn out to be old age.
  

    
> That's pretty different from what I wrote.

Sorry, I didn't mean to misrepresent what you'd presented in your book,
David. It's packed with so much information; I've read it thoroughly twice
but should still refer to it before I compose another question, I see.

 *******

There are chapter dividers in "The Forgetting" that consist of quotes from
what I presume are an Alzheimer's support group -- I'm guessing an online
one, though that probably doesn't matter.

The quotes ring so true, mirroring my own experiences with my mother. eg:

"I have really struggled with the honesty issue. What do you say to someone
who sits on her bed and says that she has never stayed out overnight without
letting her parents know where she is? What do you say to someone who thinks
she is a teacher and if she doesn't get home and into her classroom there
will be a whole class of children left unattended. What do you say to
someone who thinks she has no money to pay bills and will lose everything
she owns if she doesn't get home to a job that you know she has been retired
from for years?"

It's hard work, "lying" to my mother. I've learned to do it and most of the
time I'm pretty good at it these days. I still slip once in a while, though. 

A couple months ago my husband and I had taken my mom out for a drive. She'd
had a good time, she was happy, enjoying herself. We were heading back to
the memory care wing of the assisted living facility where she lives when
suddenly she said to me "I haven't seen Fred in such a long time. Why
doesn't he come visit me?"

"Fred" was my dad/her husband. He died of cancer 12 years ago, in the family 
home where she and he had lived together for 50+ years. She hadn't mentioned
his name at all in the past year. I thought she'd forgotten all about him.

"Oh, sweetie," I said, "he can't visit you. He's gone."

"I know!" she exclaimed. "He's living with that other woman and I'm so
upset about it." And her face reflected her sorrow at him having left her
for another woman. 

My dad didn't leave her for another woman. I was so focused on relieving
her sadness at this imaginary abandonment that I said, "Oh no, honey, 
don't you remember? He died 12 years ago. You were with him. We were all
with him. You were so good to him, you took such good care of him. He'd
visit you if he could. He can't because he's gone, he got old and sick
and he died. He always loved you, just you, it's OK, honey."

And it was like I'd sucker punched her. Her face collapsed like a deflated
balloon. Her body sank into the seat. She burst into tears and loud,
wailing sobs. "He's dead??? He's DEAD? How come I didn't know about this?"


I felt like the world's biggest dope. It's sooooooooo hard to let go of
the notion that we can orient our Alzheimer afflicted loved ones if we do
it gently, with kindness. I think it's a lesson we need to learn over and
over again. 
  

    
But what would you have said differently, Cynthia, after learning this
lesson?
  

    
Oh, Cynthia, that story is heartbreaking. Awful for your mom, but maybe even
worse for you. You are giving her love and attention, and are handling this
situation with kindness and grace. And thwack! that sucker punch gets you
both in one shot. I think there is sometimes no way to know in advance what
is the right thing to do. Sometimes maybe there is no right thing.
  

    
There was an article in Time magazine a couple of weeks ago about
taking megadoses of vitamins E and C that seemed a bit out of whack to
me. They said that a study published in the Archives of Neurology
showed "that the two vitamins taken together in huge daily doses (at
least 400IU of E and more than 500mg of C)could reduce the risk of
Alzheimer's a remarkable 78%." Sorry I don't have any links for this.

I understood from your book that those vitamins only have effect if
they are part of the foods in a diet, not by way of vitamin tablets.
And I have never heard of anything effectively reducing the risk by
that kind of percentage. Do you know anything about this study?
  

    
Cynthia, sorry for that abrupt transition, that was such a moving
story for you to share with us.
  

    
No problem, Ted. I'm gonna hopscotch over you to respond to strega and
frako, since there are so many avenues we can explore regarding this
disease...


> what would you have said differently

> ... no way to know in advance ... Sometimes maybe there is no right thing

strega's right, I don't know what other response I might have offered that
would have relieved her anxiety without sending her into a different
negative spiral.

I'm learning to let go of expecting linear logic, which helps. My reply to
her expressed anxiety doesn't have to relate logically to what she's
worrying about. If she is fretful that she's lost "the list" I don't have
tell her that this [totally imaginary] list "is safe in the glove box of
my car." I can tell her "they said that the handle is over on it, so we
don't have to concern ourselves." This is as satisfying an answer for her
as one that would make SENSE to you or me. 
  

    
That's a wrenching story, Cynthia.

(Reminder that those reading this on the Web who aren't members of the
Well can still participate. Just write to us at inkwell-hosts@well.com
and we can post your thought or story or question here.)
  

    
Oh dear, I don't mean this to be about me and my mom. I'm just my
personal experience for informational purposes. And there actually is a
tie-in, honest!

I'm wondering, David, if you can tell us a bit more about how memory
works. You've talked about how a memory initially resides in the
hippocampus, and how it's moved to other parts of the brain as it
becomes a more permanent piece of information. In your book you go into
a lot of detail about neural pathways and how memories are reinforced
each time they're retrieved because of the different things that can
trigger that retrieval.

But how does memory retrieval go haywire? Why does my mom suddenly
believe my dad has gone to live with another woman? How come she
recently went into a panic because "I forgot to take my uncle's car
back to him" when not only is there no car, she never had an uncle in
the first place?
  

    
Thanks for sharing that story, Cynthia. You've just perfectly
articulated the horror of this disease -- what it does to both patient
and caregiver.

Memory going haywire -- good question. I think the easiest way to
understand it is to think about the healthy brain as this incredibly
complex collection of wires, connecting all these different points
together. Memories are those connections. 

Now imagine something is corroding the insulation on a lot of those
wires and they're getting crossed. Actual memories become tainted with
new connections to stuff that shouldn't be connected. 
  

    
David, I found a link re my question in post 61.It is
http://archneur.ama-assn.org/cgi/content/abstract/61/1/82. Do you know
anything about this?
  

    
Trying to guage how to lessen your chance of getting Alzheimer's is a
pretty tricky game. The evidence is very inconclusive, and often
contradictory. After thousands of studies, nothing really emerges,
except maybe two things:

1. Nothing you can do will make you immune to the disease.

2. If you excercise, eat right (low fat, fruits and vegetables, etc),
keep yourself mentally engaged and challenged, maybe you could push off
the age of onset by a few years.

To read the latest collection of research about vitamins and such, go
to this helpful article.

http://www.alzforum.org/new/detail.asp?id=765
  

    
You are being really generous with your time and expertise here--I am
learning a great deal.
  

    
In "The Forgetting," you note that in the early '90s, researchers
concentrated on molecular genetics, uncovering genetic links to 
Alzheimer's. They found one specific gene that -- if you have it --
you *will* get Alzheimer's (page 150-151) (unless you die first), and 
most likely it'll be a middle-age onset Alzheimer's.

Is getting a gene sample like getting a DNA sample? Can live humans be 
tested for this gene? 
  

    
I'm glad it's helping, katecat. But I'm also crass enough to suggest
that you consider getting the book. These few hours are really a drop
in the bucket compared to what I did in 3 years writing that. 

Yes, Cynthia, live humans can be tested for it. But I could almost
guarantee that no one reading this has that gene. If you had that very
rare gene in your family, you would know it -- your family history
would be flooded with cases of Alzheimer's.
  

    
I concur on the "buy the book" advice. It's so densely packed with
information, there's no way we're going to be able to touch on even half of
its content, let alone explore it in depth during this two-week
conversation.

As for having spent three years of your life on this book... whew! I
understand that investing three years on a book isn't unheard of, but the
subject you've addressed is such a difficult one as far as the emotional
side, David. 

During your research, I gather you got involved with Alzheimer support
groups, both online and f2f, and that you came to know not only people
who were serving as caregivers for Alzheimer's sufferers, but those who
had the disease themselves.

One group you talked about in "The Forgetting" was an experimental support
group in Queens -- Freund House -- composed of people diagnosed with 
Alzheimer's, with the larger body of members divided up into different 
groupings based on the developmental stage of the disease. 

You described a particular meeting that took place in August '98. It's
been close to six years since then. Do you have any contact with any
of the group's members these days? If so, how are they doing? And how
did your meeting and interacting with them affect you, as far as your
emotional understanding of this disease?
 
  

    
that's an interesting question. and david--not a bit crass, but I already
have a dog-eared copy of the book in my satchel.
  

    
Just to pile on . . . there's a daycare center here that's on the
grounds of retirement community campus. Groups of kids go "up the hill"
to visit their "grandfriends" every so often, including (but not only)
an Alz ward. And I'm told that for some of the seniors with
Alzheimer's it is the one time that they come alive, that they just
light up, become unusually coherent, tell stories from their youth, and
relate in ways that we would regard as more ordinary.

David, did your investigations turn up plausible accounts of such
phenomena?