Inkwell: Authors and Artists

    
My mom's sister's mother in law was 101 when we visited last
Christmas, and about the only time she really livened up was for my
daughter. She didn't know who it was, but she knew it was a child.
  

    
Cynthia - I had exactly the same experience that you described. My
Grandmother kept insisting that I go get my Granddad because she needed
to tell him something.  I tried telling her that he had gone to the
store or that he was running an errand, but she kept insisting. I
finally reminded her that he had died. Sucker-punch is as good a way as
any to describe the reaction. She was shocked and horrified, then she
got really angry with me for telling her lies and making us such a
terrible thing - a thing that just could not be true. If I could change
any single behavior of my life, I think I might choose to change that
moment and not say that to her - not cause her to experience such a
deep and unexpected loss needlessly.
  

    
Wow -- lots of stuff here. Sorry, katecat, for accusing you of being a
not-yet-reader. I'm not so good at keeping track of all the different
personalities here, but if I'd bothered to scroll up and check I could
have avoided being not only crass, but rude.

Alz patients and kids -- a definite pattern. I've heard many upon many
a story about this sort of thing. I think two things are at work.
First, we all tend to light up with kids around. There's an exhuberance
and innocence that that can make even hardened cynics start gooing,
cooing, and frolicking. 
     Second, there are many elements of the Alzheimer's-addled mind
that can be fairly characterized as childlike. I do a lot of writing on
this in the book, as we mentioned before. You can actually correlate
specific stages of Alz to certain developmental ages of childhood. So
intellectually, it's not surprising that natural bonds seem to develop.
But it's still a remarkable -- and often very special -- thing to see
when it happens.

Cynthia, you asked about the emotional investment and about whether
I'm still in touch with my early stage group. I am not. The group
disbanded several years ago, as I discuss in the book, and there's no
particular way for me to stay in touch with them anymore. Also, of the
two group leaders I was working with, one moved away suddenly for
family reasons and the other, Irving, died tragically of cancer. 
    The truth is that I didn't form an indelible emotional bond with
these people. I liked them very much and we got along very well. I was
very touched by their ordeal and their humanity. But I my attachment
was really to them as a group. We didn't have one-on-ones that would
make it appropriate for me to chase them down in their family homes.
And it's probably worth adding that, after 6 years, there's very little
chance that any of them would have any sense of who I am, or was. 
   Many people ask me how I could voluntarily spend so much time in
such a depressing world for several years. I certainly wondered myself,
as I was getting started. what the effect would be, if I could hack
it.  It turns out, though, that for me  it's not depressing -- it
doesn't bring me down. It actually lifts me up, gives my life new
meaning to have been a part of this world. 
    That's not to say that I haven't tasted my share of sadness and
even despair from time to time. I remember early on, there were many
weeks straight where I would be sobbing every night as I read through
these stories. But of course I had the luxury of then walking away from
them, not having to face the sleepless, stressful, unbearable strain
and drain of resources. Not having to deal with that part, I was left
with a front row seat to the depth of feeling, the courageousness, and
the unique insights that family members (and patients) were deriving
from this experience. 
   From loss, we get meaning, And from this particular type of loss,
family members get an insight into life's component parts. It brings
out a richness, amidst the sadness and strain, that is hard to
describe. But you know it when you see it, and it rubs off a little on
observers like me. From that standpoint, it's been a privilege to be a
part of this world.
   Add to that the extraordinary satisfaction of hearing from the
occasional reader that I have actually made a difference in their
lives. That's a truly indescribable feeling.
  

    
The factual information in your book is wonderful and tremendously useful, 
but my favorite parts are the ones where you write about the meaning 
people find in this loss. It has really helped me think about what's 
happening with my mother--to find ways to think about it that don't begin 
and end with despair, though of course a lot of grief is mixed in.

(and I have to insist there was no crassness or rudeness. I am very much 
in favor of authors getting people to buy their books. I promise to talk 
it up to all five of my siblings AND refuse to lend it to them, so 
they'll have to buy their own!)
  

    
The question of responding appropriately to an Alz patient can be even
more complicated than mentioned above.

In 1994-1995, my then-husband's mother lived with us for several
months, after she had been diagnosed as being in the advanced stages of
Alz. She sometimes had psychotic episodes, and she was almost always
"out of it" - but she also had moments of undeniable clarity and
lucidity.

One time she looked me straight in the eyes and said, "Cindy, I know
I'm losing my mind. I know I'm dying. I'm scared. I don't want to die
yet, I don't feel ready to let go."

Then she shifted into "word salad."
  

    
Thanks, katecat. I'm very happy to hear that those parts of the book
resonated with you.

Cindy: wow. That is heart-stopping. Thanks for sharing that. I'm
speechless. There's nothing else to say. I just want to let that sink
in. 
  

    
Oh Cindy, those sudden moments of lucidity... Don't they break your heart?
sigh...

> for me  it's not depressing -- it
> doesn't bring me down. It actually lifts me up...

I understand that, David. There's something sweet about Alzheimer's
patients, at least the ones where my mom lives. They're so guileless and 
so tender. One resident gets upset, others will go to him or her and 
offer sympathy, a hug, a pat on the shoulder. 

OTOH, they're behaviors can be pretty appalling. My mother recently
peed in her closet because ... because ... well, I don't know. Maybe she
thought it was the bathroom. I check her pockets to make sure she hasn't
"saved" a handful of spaghetti. We hide the toothpaste because she 
rubs it around her eyes, thinking its makeup. 

These behaviors would be sort of cute if a little kid was doing them. In
an elderly person it's disturbing until you get used to it. 

But my mom and her fellow residents ARE little kids in so many ways. In
"The Forgetting" you list the stages of child development, then contrast
it with a list of the abilities lost in an adult as Alzheimer's takes its
toll. The mirroring between these two lists is informing:

CHILD DEVELOPMENT:
Age           Acquired Ability
1-3 mo.       Can hold up head
2-4 mo.       Can smile
6-10 mo.      Can sit up without assistance
1 year        Can walk without assistance
1 year        Can speak one word
15 mo.        Can speak 5-6 words
2-3 years     Can control bowels
3-4.5 years   Can control urine
4 years       Can use toilet without assistance
4-5 years     Can adjust bath water temp.
4-5 years     Can put on clothes without assistance
5-7 years     Can select proper clothing for occasion or season
8-12 years    Can handle simple finances
12+ years     Can hold a job, prepare meals, etc

ALZHEIMER'S DISEASE
Stage         Lost Ability
1             No difficulty at all
2             Some memory trouble begins to affect job/home
3             Much difficulty maintaining job performance
4             Can no longer hold a job, prepare meals, handle
              personal finances, etc.
5             Can no longer select proper clothing for occasion or season
6a            Can no longer put on clothes properly
6b            Can no longer adjust bath water temperature
6c            Can no longer use toilet without assistance
6d            Urinary incontinence
6e            Fecal incontinence
7a            Speech now limited to six or so words per day
7b            Speech now limited to one word per day
7c            Can no longer walk without assistance
7d            Can no longer sit up without assistance
7e            Can no longer smile
7f            Can no longer hold up head


One of the huge differences I see in the above list is the total
unpredictability of Alzheimer's duration. You can generally tell how long
your child will be in diapers. But how long will Alzheimer's last? My
mother first showed memory difficulties in 1993. Eleven years later she's
closing in on 6c. Can she go on for another 11 years? I don't know!

I sometimes think that her disease is going so very slowly because she 
took such good care of herself. She's terrifically healthy in all other
ways besides her brain. What if she'd been a big ol' smokin', drinkin',
carousing woman? Would she be released from this slow death sooner?

I've been joking lately that I have to start taking worse care of myself.
Is there any likelihood that my joke has a glimmer of truth to it?
  

    
I'm not sure if scientists have a real grasp on why some people get
the disease longer and some shorter. There have been whispers that is
has to do with lifetime nutritional health, with lifetime intellectual
involvement, with general fortitude. 

I want to riff on your last thought a little bit. It gets to the
surprising but very important notion of "good death" vs. "bad death."
Alzheimer's, I think we can all agree, is one of the worst ways to die
-- for many reasons mostly connected to its length. And there are
surely many other awful ways to die. ALS is considered awful, arguably
the absolute worst. Cancers can be excruciating.

What's left? What's left, basically, is some kind of sudden heart
failure. Quick, relatively painless, relatively unburdensome to family.
Not to suggest that there's anything good about a loved one dying from
a heart attack, but since all death sucks, and is inevitable, there is
merit to considering the relative "quality" of death. 

This to me is a mindblower, something I'm still trying to wrap my head
around. I know for some people this sort of thinking naturally leads
to full-blown considerations of assisted dying. I'm not sure how I feel
about that, but in considering that we are obviously going to be
further and further stretching out our lifespans, and therefore
stretching out our periods of decline, coming into intimate contact
with age-related diseases like Alzheimer's, it seems likely that we'll
have to develop a much more mature approach to death than we have now.
  

    
>  Alzheimer's, I think we can all agree, is one of the worst ways to die
>  -- for many reasons mostly connected to its length

And, based on personal observation, the duration of the mental anguish for
the afflicted and those who love him/her. My mother has been in emotional
pain -- the pain of knowing something is distinctly wrong with her mind yet
unable to grasp what the problem is -- since the mid '90s. And it's not
abating, it's getting worse. 

I don't want this to be a "this terminal illness is worse than that one"
competition, though. You're right, David, dying is tough pretty much
always.

The thing is, there are pain management plans for things like terminal
cancer. We *know* that we can knock out the pain with morphine and such
and we generally know just how much to use to quell the pain without
sending the patient into unconsciousness (at least until near the end). 

Our pharmacopeia for mental distress in the elderly with Alzheimer's 
doesn't seem to be nearly as well developed as far as how it works for
an afflicted individual. Try Prozac! How about some Zoloft? Maybe 
some Paxil mixed with Respiridol to back it up? Or let's combine Buspar 
with some Ativan. Is it the anti-depressant that's making her hands shake
like Magic Fingers machine or is it the anti-anxiety drug? Let's take
her off all that and try something else.

Since many of these drugs take a while to build up in the system and
start doin' there job, and since elderly bodies tend to take longer to
assimilate a drug anyway, finding the right combination is a long, slow,
and sometimes nightmarish process. I'm still working to find some 
combo that'll keep my mom from suffering without turning her zomboid.

And she's in excellent physical health, as I noted. We're only working
with a couple of drugs at a time. How can anybody tell what's causing
what when when a patient is on 15-25 medications a day, as seems to
be common for the frail elderly?   
  

    
Well said.
  

    
Quality of life issues are so important. Often, the patient's q.o.l. is
rated lower by riends and relatives than by the patient.  This is
especially the case in conditions that cause severe limitations in what
people can do, compared to their abilities before the illness/accident.

Sometimes it is painully obvious that a person with AD or another dementing
condition is inhabiting a living hell. More often, it's unclear whether or
not most of the person's time is benign or even pleasant. So hard to know
what's the best course of action, for loved ones or even for ourselves in
the future.
  

    
My mother has a living will. In it she details at what point she'd want us
to "pull the plug" if she's not able to do it herself. She wrote this 20
years ago. Based on what she wrote then, she'd like me to pull the plug now.
I can't, of course, but I feel clear on her wishes should I be faced with
the decision. 

Since my mom moved to a home a bit more than a year ago, the monthly
fees have risen twice already. It's costing about $60,000 a year to keep
her there right now. Fortunately she has a teachers pension, my dad's
Social security and the rent we collect from her house. That *almost*
covers the costs, though we're also bleeding off stocks and bonds she
had set aside "for retirement."  We don't think she can outlast her
assets, but that's not a sure bet if the care costs continue rising
at their current rate.

My own personal question is: if I were diagnosed with Alzheimer's, would
I pull the plug on myself? I'd like to think I'd have the courage to do 
it. 

What would you do in that circumstance, David? What if you knew that your
disease would put your family through this inch-by-inch loss? What if you
knew that your family would not only lose you, but every penny ever saved,
lose the family home, everything just to cover your care?  
  

    
I am not David, but I find, to my surprise, that I have a clear answer to
that question, or at least part of it.

If it were me, and my house and my money, I would not want financial
considerations to affect the decision. I'd want the decision to be made in
my medical best interest. Period. That said, the best solution remains
unclear, but at least you have her written instructions to guide you.

I have oral instructions from my mother, none from my father. This
discussion, along with the AD class I am taking, has made it clear that I
need to ask them to fill out living wills, and that I should make one for
myself as well.

Not that any of that makes decisions clear cut or easy.
  

    
<cdb>, if yr good mom seem to have made her wishes known
back when she was well that this would be the right
time to pull the plug, you cant because why?
also in yr case there is no plug to pull --- because she is,
as you point out, in good -physical health-.
i think about this with my own evil mother ---
she gets best of care, we may be able to forestall
moving her from 'assisted living' to the dementia
unit for a few more months, yet she rates 10 on the dementia
scale. anyway -she- is physically frail, nothing horrid,
just lots of oldperson ailments (high blood pressure,
borderline diabetes, she's on every anti-stroke and
vascular med in the known universe). but she and
i talked back when she went into assisted living.
and she doesnt want to be kept alive at all
costs, thinks stuff like permanent vegetative state
(having seen some of her friends go thru it)
is hell for the family and useless for the victim,
etc etc. she has a dnr order, for example...
and there isnt a lot she takes pleasure in left
to her...so i find myself wondering about
the ethics of taking her -off- all those
vascular meds, once she truly enters
the dementia ward. i want her to be comfortable
and have good qol --- but when she enters
the locked facility that is kiplinger house ---
what are we prolonging here? and i -think-
i can filter out my er lifelong difficulties
with how she shouldnt have been allowed to breed.
it's hard for me to see good qol for her once
she would enter that place --- and how she
would want her life to be prolonged at any cost.
which she very clearly said she doesnt want.
but taking her off plavix is not the same
as taking her off intubated o2 in the icu...
anyway, when it comes to this, i'll be much
consulting wuth the wise estate lawyer and
the equally wise geriatric case mgr/social
worker...
  

    
>  <cdb>, if yr good mom seem to have made her wishes known
>  back when she was well that this would be the right
>  time to pull the plug, you cant because why?

I'm not sure if you mean that rhetorically, but just in case -- I can't
because there's no "plug" to pull. I'm using the term loosely, Paulina. In
my own case, "pulling the plug" if I were diagnosed with Alzheimer's would
mean I'd jump off the proverbial cliff. In my mom's case, it's more like
"I'll do nothing to extend  her life." If she got pneumonia, I'd decline
antibiotics for her (assuming I have the legal right to do that, and it's my
understanding that I do).

One of the things David examines in "The Forgetting" is the quandary we face
 -- that science faces -- in extending human life without having all the
tools and techniques in place to make that extension comfortable, enjoyable.

In general, it seems that medical science tends not to look at the
"comfortable, enjoyable" part of the equasion. Doctors can stick a shunt
into a person who has pancreatic cancer, and it'll probably keep the
patient alive another six months. If the patient is lucky he'll get
a couple more months of tolerable comfort. But he'll also get four months 
of additional suffering. 

David, do you have any thoughts on science's responsibility to consider
the full consequences of its discoveries? 
  

    
Hmmm... This is a very complex issue.

For myself, I would *welcome* life-extending procedures if I had
something like pancreatic cancer. I adore being alive, I find great joy
in interacting with the people I love, in listening to music, in being
outdoors in nature, in watching children and sunsets and passion in
all its many expressions. I delight in my ongoing experience of this
world. Even if I were in considerable pain, I think I'd want to stay
here as long as possible.

But, if I had Alz or another form of dementia, everything is
different. If my *self* is no longer here to experience being alive,
why should my body hang around? "Pulling the plug" makes total sense to
me, in this scenario. In fact, I'm thinking I want to put plans in
place.
  

    
I had to 'pull the plug' on my father who had left no directives, back
in 1987. I will never forget the agony I went through to make that
decision. It was a simple decision to make for myself, but unbearably
hard to make for someone else. These are awful decisions that we are
going to have to make more and more as science gives our bodies more
time than they can bear.
  

    
You guys are doing some fascinating and important exploring of this
issue. One point to make is to riff on Paulina's line:

>you cant because why?
>also in yr case there is no plug to pull 

In Alz, there is not only no plug to pull. There is no obvious time or
manner to gently induce a goodbye. It's not like we can amp up the
painkillers an extra notch and give the patient a pleasant sleepy
goodbye. To put an Alz patient out of their "misery." you'd have to
actively kill them. That's something that very few people in our
culture, at this point in history, are unwilling to do. 

The Alz patient could do it near the very beginning if he/she was
diagnosed early enough -- one of Kevorkian's very early patients was in
this situation. But that's also hard for people to swallow, because at
that point you're talking about a person who looks and feels pretty
damned normal. 

I'm not making a judgement on anyone who does take this road, but I'm
afraid that right now we're just not in a place where we can come to
this in a natural-feeling way. We're all social beings, and this is
just not a part of our accepted society right now -- even the
left-leaning, progressive, enlightened slice of society represented in
forums (fora?) like this one. 

We need to expand and explore the conversation of Good Death and
Quality of Death. I've been thinking about doing this as a book or an
essay (a good essay can take almost as long as a book, in my limited
experience), but it's not something I can do right now. Maybe in a few
years. 
  

    
I meant "very few people...are willing to do." I preach proofreading,
but I don't always practice it.
  

    
Cynthia asked: "David, do you have any thoughts on science's
responsibility to consider
the full consequences of its discoveries?"

I think scientists need to bear that burden as much as we all do. I
think it's a complete cop-out for technologists and scientists to say,
"hey, we're just exploring scientific questions here -- it's up to
society to decide how to use our discoveries." I consider it morally
repugnant. Most of them know somewhere inside that that is a lie, an
easy way to escape a whole world of important -- sometimes pressing --
questions. 

I also feel that we all need to step up to the plate as well.
Scientists may have a special responsibility, but that doesn't absolve
the rest of us.
  

    <scribbled by cdb Sun 8 Feb 04 08:50>
  

    
(previous post scribbled because David's response rendered big chunks of my
text out of sync)

Yes, I didn't mean to imply that science was solely responsible, we all need
to explore these difficult questions and come up with answers that work for
each of us.

> I would *welcome* life-extending procedures if I had
> something like pancreatic cancer. I adore being alive, I find great joy
> in interacting with the people I love, in listening to music ...
 
I actually used the pancreatic cancer/shunt example because I witnessed my
uncle, then my father die of pancreatic cancer, <loves2sing>. My uncle chose a
shunt. Since he was already weakened by the cancer, his body didn't recover
easily from the surgery to place the shunt. He was in post-surgery pain for
about four months, bedridden. He got about two more months where he was able
to get out of bed and hobble around barely, then the disease took hold again
and he ultimately died. But before he died he said he'd wished he hadn't
had the shunt put in.

My father declined the shunt. He also declined food once he got the
diagnosis. He actively chose to die faster. "I want this thing to be over,"
he told me. And though it was hard to witness his rapid decline, I've always 
though he did the bravest thing. 

When my mom's father was in an Alzheimer's home, no longer able to speak, 
tied into a wheelchair because untied he'd fall out on his face, and his 
pacemaker began to malfunction, the doctors wanted to replace the machinery. 
My mom and her brother had to fight hard to stop them from giving him a new 
pacemaker.

Used to be, patients in end-stage Alzheimer's got feeding tubes. These
days that's no longer recommended. But what about keeping an Alzheimer's
patient ticking away with heart medicine and whatever other drugs are 
being used to slow the process of shutting down? 

Paulina faces a difficult decision. In some ways, I wish I had the 
chance to make that choice for my mother. I'd like to think I would have
the courage to tell them to take all the meds away except the ones that
kept her from suffering during the dying process. 

In other ways, I'm relieved I don't have to choose. As Ted said, it's an
agonizing decision to face. 
  

    
David, your book takes us into several territories much larger than
Alzheimer's itself. One of the ones that impacted me the most was how
much our memory plays in our definition of self and our sense of our
own reality. Would you talk a bit about this? Also, how much of this
has affected the way you understand yourself?
  

    
Let me start by excerpting my book:

***
We are the sum of our memories. Everything we know, everything we
perceive, every movement we make is shaped by them. "The truth is,"
Friedrich Nietzsche wrote, "that, in the process by which the human
being, in thinking, reflecting, comparing, separating, and combining .
. . inside that surrounding misty cloud a bright gleaming beam of light
arises, only then, through the power of using the past for living and
making history out of what has happened, does a person first become a
person."

The Austrian psychiatrist Viktor Frankl made much the same point in
Man's Search for Meaning, his memoir of experiences as a concentration
camp inmate. Frankl recalled trying to lift the spirits of his fellow
camp inmates on an especially awful day in Dachau: "I did not only talk
of the future and the veil which was drawn over it. I also mentioned
the past; all its joys, and how its light shone even in the present
darkness. [I quoted] a poet...who had written, Was Du erlebst, kann
keine Macht der Welt Dir rauben. (What you have experienced, no power
on earth can take from you). Not only our experiences, but all we have
done, whatever great thoughts we may have had and all we have suffered,
all this is not lost, though it is past; we have brought it into
being. Having been is a kind of being, and perhaps the surest kind."

Emerson was also fascinated by memory -- how it worked, why it failed,
the ways it shaped human consciousness. Memory, he offered about a
decade or so before his own troubles first appeared, is "the cement,
the bitumen, the matrix in which the other faculties are
embedded...without it all life and thought were an unrelated
succession." 

While he constructed an elaborate external memory system in topical
notebooks, filling thousands of pages of facts and observations that
were intricately cross-referenced and indexed, Emerson was also known
for his own keen internal memory. He could recite by heart all of
Milton's "Lycidas" and much of Wordsworth, and made it a regular
practice to recite poetry to his children on their walks. His journal
entries depict an enchantment with the memory feats of others. 

He kept a list:

- Frederic the Great knew every bottle in his cellar
- Magliabecchi wrote off his book from memory
- Seneca could say 2000 words in one hearing
- L. Scipio knew the name of every man in Rome
- Judge Parsons knew all his dockets next year
- Themistocles knew the names of all the Athenians

"We estimate a man by how much he remembers," Emerson wrote. 
***

That begins to touch on memory's importance to the self. It's
certainly impossible for me to imagine what my life would be without my
memories. Having said that, though, the book also helped me to become
much more comfortable with all the stuff I can't remember.

I used to be immensely frustrated at all the details I could not
remember. But in studying the biology of memory, I learned that
forgetting is an important part of the system. We forget most of the
details we come into contact with in order to form intelligent
summaries. That's a crucial part of what the brain does. In thinking
about that, I learned to relax about phone numbers and names and stuff
like that, and dwell more on ideas and truths.
  

    
even monster, when they fail, are piteous. so i absolutely dont
want evil mother to suffer. and what i dont know, and will need
to get expert medical advice on this, is whether all the vascular
drugs make her more -comfortable-. and would continue to do so
after she enters the locked ward...but good death, yes. i saw
all the !@#$%^&* my deranged father went thru with endstage
prostatic cancer, and even with all the interventions,
he lasted as long as they said he would, was still
in constant pain, etc etc. i finally yelled at evil mother
the 3rd time he was hospitalized for pneumonia, and taken
out of hospice 'STOP GIVING HIMJ ANTIOBIOTICS! THERE IS
NO GOOD OUTCOME HERE! what are you prolonging? remember
how -dad- used to say 'pneumonia is the old man's friend'?"
so she finally consented to let him go, and he did...
and when my best friend was dying of aids during the
summer roy cohn was getting azt for his, and said best
friend was =begging= me to get the info and the meds
as indicated by the hemlock society, and i couldnt, well...
anyway, at the moment evil mother, while incontinent,
in a walker, hard of hearing, demented, and stooped over ---
is successfully breaking up a marriage among two
far healthier and lucid 80-yr-olds.so by her definition
she is having fun/has reason to live. so fine.
but i want to start the discussions -now-, about what
to do with the vascualr meds, when she enters
kiplinger....because if EM cant flirt and be
the center of attention, she really does NOT
have a reason to live...and no one can  consider
a life where you cant take pleasure in anything
(except perhaps for whatever inaccessible dreamstate
advanced dementia patients live in) --- a good life...