Inkwell: Authors and Artists

    
Also interested in knowing what Viking/Penguin is doing for you, versus what
you are doing for yourself, in terms of promotion.  Seems to me a publisher
should be working to connect you with precisely the audience that wants to
know more about Alzheimers, about assisted living, etc.  But, is it?
Or have you lined up your own speaking engagements at conferences, etc.?

(I'm not a totally disinterested party; I'm also at work on an aging-related
book.)
  

    
Thanks, Cynthia, for the opportunity to plug my appearances. You can
see where I'll be speaking by going to my website,
www.laurenkessler.com, and clicking on "Appearances."  While at the
site, you can also read some of my magazine work, get acquainted with
my other books, read excerpts and find out why I credit Edna Dt.
Vincent Millay and Brenda Starr, Reporter for my career. 
  

    
And to answer your questions, Paula...Viking sent me on a west coast
book tour (Seattle, Portland, San Francisco, Los Angeles).  I read at
bookstores and did media in those cities.  Also Eugene, of course,
which is where I live.  I did phone interviews with radio and
newspapers from all over the country and taped a nationally syndicated
TV show, Between the Lines, when down in L.A. (You can see the whole
show at http://www.laurenkessler.com/filestore/LaurenKessler.wmv.)  I
provided Viking with names and addreses of the major Alzheimer's
chapters in the U.S. and they sent special letters and, in many cases,
the book itself.   

I have done and am doing a lot of other things that Viking doesn't
have much to do with -- speaking engagements that have come to me via
many paths: the exposure the book got when O magazine ran a big
excerpt, that TV show, connections I made on tour and, most recently,
the piece on eldercare that I wrote for the Sunday Oregonian.  So folks
involved in the eldercare industry have been contacting me with
invitations to speak at various conferences.  

Few writers are satisfied with what their publishers do for them. 
Would I have liked an ad in the New York Times? You bet.  A sit-down
with the national buyers for Barnes & Noble and Borders.  Oh yeah. But
that wasn't in the cards for this book.   
  

    

Looks to me like you have had some pretty decent support from Viking,
Lauren. I totally understand about wishing for that NYT ad and all, but any
kind of push from the publisher for a book about this subject is
encouraging.

After all, the whole issue of Alzheimer's, and in a broader sense the 
issue of the frailty of old age and the need for a lot of extra care,
is something people generally don't want to consider until its thrust
upon them. I mean, who wants to know about life in the dementia wing?
Who wants to think about how all that might apply personally some day?

I've become a lot more knowledgeable about eldercare issues because I've 
had to in order to be an effective advocate for my mother. I find
myself thinking a lot about what my life might be like if I become
unable to live in my own home and tend to my own needs. 

My mom is fortunate. She is the last generation of public school teachers
in California with a pension that's ample enough to pay for the bulk of 
her monthly care costs. These days, state pensions aren't nearly as
generous. Pension plans in the private sector are almost unheard of.

I certainly couldn't afford to live where my mother is housed. And as
the whole boomer generation (myself included) moves into the "old age"
range, there are going to be an awful lot of us up that proverbial creek. 

But what can we do? Do we buy long-term care insurance and hope that'll
cover it if we have to be put in a home? Do we form intentional communities
and plan to care for each other? Should we push for Kevorkian clinics
and simply off ourselves if we get the Big A diagnosis? 

What do you think, Lauren? 
  

    
Good questions.  (Not directed at me, but I personally vote for all three
solutions being available.  I just bought my own ltc insurance.  I like what
I read about intentional communities, but think their limits will become
apparent fast, and that moderate to severe dementia is one of the conditions
that will make that happen.  And I think all of us should be able to
determine, if we are lucid and not suffering from depression, when to end
our own lives.  But that's me.)

My question, Lauren: I've started reading Naomi Feil's book, "The Validation
Breaktrough," and whoa.  She's developed what is pretty clearly a superior
way of interacting with people who have dementia or Alzheimer's, I think
lots of people's experience supports that.  But the claims in this book!
Everyone in it is a "composite."  These typologies she comes up with, of the
Maloriented and the Time Confused: are these standard categories that
neurologists or psychologists all use?  She claims she could have saved
various people who wound up in mental institutions, had she only known them
in time and worked her Validation (she always capitalizes it) wonders on
them.  There is no shred of documentation for any of this.

I'm only partway through, but already alarms are going off.  Is this a case
of a wonderfully intuitive therapist who helped pioneer a breakthrough, but
then made extravagant and unsupportable claims for it beyond what any kind
of actual science could demonstrate?  Or am I just being cynical?  What do
people in the field think?
  

    
My aunt has long-term care insurance,and I don't know that we'll ever
use it.It will not cover an adult family home,only a nursing home,and
the one such place where I'd be willing to put her is not secure.It
was,once,before it integrated its dementia patients into
"neighborhoods" throughout the bulding.She is an "elopement risk".

Possibly I'll move her to providence Mt. St. Vincent if she forgets
how to walk at some point,meanwhile,next week she might get a radio
transmitter bracelet through our county sheriff's department. 
  

    
>>But what can we do? Do we buy long-term care insurance and hope
that'll cover it if we have to be put in a home? Do we form intentional
communities and plan to care for each other? Should we push for
Kevorkian clinics and simply off ourselves if we get the Big A
diagnosis? 

Yes (with cautionary tale).  Yes (emphatically).  Yes (but change the
language).

First YES: Caveat emptor on the long term care insurance.  NYT did a
wonderful series on eldercare and investigated the cases of people (1
out of 5 in California, fyi) who had LTC insurance and couldn't get the
company to pay out.  So Ten Cuidado!

Secnd YES: Intentional communities...absolutely.  Co-housing,
multi-generational communities and even communities where residents are
ill (support and nursing staff can be shared). We who participated in
so many experiments (communes, childcare coops, women's health coops,
alternative schools, alternative radio, etc.) need to be creative and
pro-active.

Third YES:  Let's forget Kevorkian and all that imagery.  Oregon has
the nation's only Death with Dignity legislation, which allows doctors
to prescribe a lethal dose of a drug that a person, in his or her own
home, surrounded by family -- or out in the desert, wherever -- can
take and die peacefully and painlessly.  I've written about this in the
LATimes magazine: http://laurenkessler.com/EssayDetails.aspx?ID=8 
  

    
Paula...about Naomi Feil.  My advice is to not overthink it.  She had
a wonderful, helpful, break-through insight.  I'd forget about deep
reading of the book, about looking for her documentation.  Just
appreciate the idea and use it.
  

    
True, I think at this point I appreciate the idea more than the book.

(On long-term care insurance, one way the industry has evolved is that
current policies provide money for care in almost any setting: at home, in
assisted living, in a nursing home.  The person you hire to help can be
anyone except a family member, doesn't have to be a c.n.a. or a nurse.  So,
much greater flexibility.)
  

    
spinner says of her aunt's Longterm care insurance:

> It will not cover an adult family home,only a nursing home

And, as I understand it, a nursing home would probably not take your aunt in
her current state. She doesn't need nursing, she needs custodial care, which
nursing homes aren't geared for.

I'm leery of longterm care insurance. My experience with the health care
industry is that it's pretty passive. It's geared to serve only those who 
are able to demand over and over again that they BE served. It's that
way with medical care and with insurance benefits. When you're old and
frail and growing dotty, you don't have it in ya to be demanding in the
way it takes to be served. 

I'm much more invested in the Death with Dignity concept. What will it take
to get this legislation enacted nationally? What do you think, Lauren?  
  

    
Just one other thought on long term care insurance...That NYTimes
investigation really impressed me.  Insurance companies make money by
denying claims, not by meeting people's needs.  Apparently, regardless
of the flexibility (which I applaud), there are numerous reasons people
with insurance and with real need are being denied.

Death with Dignity...the right to end one's life on one's own terms. 
There's just too much to say about this to put it in a post.  Please
please read the story I wrote for the LATimes magazine:
http://laurenkessler.com/EssayDetails.aspx?ID=8 
Believe me, this is not self-promotion.  It's just a complex issue,
and I think the piece does a good job of setting it forth and
especially of dealing with the misconceptions and myths around it (like
poor, uninsured people will disproportionately off themselves because
of lack of funds and support). 
  

    
As far as working toward state and national acceptance of Death with
Dignity...a number of very smart, ethical and compassionate people are
working on this.  See http://www.deathwithdignity.org/
  

    
One last mini-post..for anyone who lives in/ around Portland, Oregon,
I will be reading at WORDSTOCK, the Northwest's Festical of the Book
(huge book fair with multiple stages, loads of terrific writers) this
Sunday at 11 am.  The two-day event is at the Convention Center.  For a
full schedule of events, go to www.wordstockfestival.com.  Should any
Inwellian be in the audience, please come up aferward and introduce
yourself!
  

    
>>that would be festival not festical... and Inkwellian not Inwellian.
Fast fingers; slow brain.
  

    

That's an excellent article, Lauren. I like that you show us real people in
real situations when you're examining the whole Death with Dignity issue. It
is a fine technique for taking things out of the theoretical, which is
where, I think, a lot of people form their negative opinion on the subject.

When my mother was still able to talk in coherent sentences and still
realized what was happening to her, she cried for hours on end. She spent
two years crying, pleading with me, "I wish I could die, I want to be dead."

But she lives on because she's not allowed in California to make that kind
of decision for herself. These days, she no longer cries. In fact, if you
didn't know her, you'd think "here's a happy being."

And in a way, the being she is is happy. But she's barely a human being
anymore (and I say this with all my love, and a huge compassion for her
circumstance). She's more like a fleshy body with a central nervous system
that randomly fires, with no rhyme or reason for firing.

I've had numerous conversations with caregivers at the facility where she
lives. I speak of my hope that she will be able to die sooner rather
than later. 

The caregivers often look at me like I'm from Mars. They are baffled.
They say "but ... but ...  She's happy!" 

And then I ask them if they would like to live in this place. Oh no!, they
say, and the lightbulb goes on. They would not want to be her, living
in a perpetual fog, unable to distinguish between food and a lap blanket
(she tries to eat both).

Why do people persist in thinking that *any* kind of life is better than
being dead? 
  

    
I also read and appreciated Lauren's article.It's not clear to me that
Cynthia's mother could have chosen her death,according to the Oregon
law.It seems to me that for a dementia-specific death with dignity
law,a given person would either have to either commit suicide at
diagnosis or name someone else who would decide when it was time for
the final dose of nembutal.

Lauren,is there anyone working on an "If I have Alzheimers,just shoot
me" protocol?Do you trust our legal system,in this culture,to decide
how demented is too demented for dignity?

I,ve just reread page 98,where,in the course of describing a shower
you gave Eloise,you write about the absence of modesty in maplewood
residents:

>With some...this lack of modesty is part of...the brain-disease
trance they're in.But with others,like Eloise,I think it comes from a
different place.I think it's an almost saintly acknowledgment of their
own vulnerability,a calm,open acceptance of their own needs and the
fact that now others must be involved in helping them.It's Eloise's
lack of vanity,her peaceful,artless humility thatthat makes it possible
for me to do what I do.It's really,when I think of it,a gift Eloise
and the others give me...<

Later in the book you describe a time when Eloise wishes loudly to be
dead.Would you have been willing to assist her making that
possible?When,at what point in the progression of her losses?

I'm thinking,too,of Hayes,his daughter Jennie and his wife.I
wonder,would Jennie have chosen to miss the end of her father's
life,the time when she could hear him talk at last,and care for him in
ways he would not have accepted earlier,to spare him the misery of
early stage limbo "...between health and illness.Their memories are
failing but the fog has not yet enveloped them.They know something is
wrong,but they can't do anything about it."(p.157)

That limbo was a terrible time for my aunt,and for me as her caregiver
(and I've never had to *live* with her).At one point,it seemed that
perhaps she had a lung tumor,and that did not seem like the worst thing
in the world *at all.* And we'd have missed our trips to Alaska,which
we couldn't take until she'd lost enough of her mind to not miss her
bank statements.I would not trade the high points of our Alaska cruises
for anything I can think of,except perhaps if she could have fallen
dead in her garden with a stroke.

Lauren,after finding life in the land of Alzheimers,what do you fear
most if you should get the disease yourself?
  

    
This morning at Wordstock I taught a class to teachers on teaching
writing.  Small world.  Unfortunately, I have to go back to Seattle
tomorrow evening (SAT).  I would have loved to have met you, Lauren. 
Good luck with your presentation!   
  

    

> what do you fear most if you should get Alzheimer's?

Good question, spinner! After Lauren addresses that, I'd like to pick
her brains a bit about her "caregiver in a dementia facility"
perspective on family members. 

In "Dancing with Rose," Lauren mentions a family member caregivers
never liked to see because that person always had a complaint about
the care. When I read that, I cringed. I was that family member! 

In defence of my relentless complaining, I believe I had good reasons
to complain. When I moved my mother in to the facility, the marketing
person who sold me on the place promised the moon and stars as far as 
the care she would receive. Yet after four years in this facility, my
mother was still not getting her teeth brushed on a regular basis. 
It wasn't just her teeth, of course. The list of care I was promised for 
her that wasn't forthcoming was vast. I use the toothbrushing as an example 
of something I'd consider a basic-care item, not something I should have 
had to monitor.

Management always promised they'd "look into it," but nothing changed.
I finally took to approaching the individual caregivers to remind them
to brush her teeth, to cue her to the toilet, to change her clothing
(I'd find her wearing the same socks for 2-3 days in a row).

I was sincerely sympathetic about the caregivers' plight -- not enough
caregivers on duty to do all the work -- but what should I do? 

How does one get caregivers to be more attentive without alienating them?

What would have worked for you and your cohort at Maplewood, Lauren? 
  

    
I am back from a weekend away and feel OVERWHELMED by all the pending
questions and areas of discussion -- all good, all important..but
YIKES.  So please excuse me if I am a little selective this afternoon,
figuring that we do have two more days.

About controlling one's own death with an Alzheimer's diagnosis. In
Oregon, two physicians have to examine you, agree that you have six
months or less left to live (although, of course, miracles happen -- as
they say) and that you are competent to make the decision.  Severely
depressed people, for example, are not given the go-ahead.  This law
won't work for those with Alzheimer's for two obvious reasons ...the
six-month or less prognosis (impossibly to make with this disease) and
the fact that when you ARE competent to make the decision, in the early
states of the disease, you would definitely NOT have a six-month
prognosis.  Basically, terminal cancer and AIDs patients use the law. 
I know of no discussion about how to extend death with dignity to those
who are either not competent enough to make the decision or are not in
imminent danger of dying.

Frankly, I think it is absolutely no one's business but the person
involved (and loved ones).  I think this is a moral or, for some, a
religious issue.  I don't see it as a legal one.  I don't think it
should be a legal issue, although I very much support the Oregon
legislation, understanding that my belief is not the common one.

Would I have helped Eloise die?  Absolutely not.  Although it was
heart-breaking to hear her say she wanted to die, I also witnessed her
enjoyment of the moment too many times to ignore the fact that she got
pleasure out of being around.
  

    
How can it not be a legal issue for one person to end another's life
on quality-of-life grounds?Who decides when dementia has become a fate
worse than death?
  

    
I would like to talk about the "complaining" relative. Cynthia's
experience is so very common...the marketing person or facility
administrator who promises everything...the facility that doesn't
deliver.  What is a family member to do?  Being quiet is not the
answer.  But neither is ragging on the minimum-wage slaves who are
probably doing as much as they possibly can do.  (Of course, if you
observe a lax, lazy, distracted or worse, abusive, caregiver, you
shouls make immediate and loud noise.)  

But let's take the teeth brushing, for example.  Maybe you start the
converation with the caregiver by saying you have just replaced your
mother's toothbrush and brought in a new tube of toothpaste. You're
going to put them right on the sink, nice and handy, because you know
how busy the mornings get and you want to make sure it will be quick
and easy to get your mother's teeth brushed.  When you visit, you make
sure the toothbrush is out in the open, on a shelf under the sink, or
whatever, and not thrown in some cabinet.  See if that works.

I mention this idea because Eloise's daughter, to use one example,
used to complain bitterly about us not putting lipstick on her mother. 
This was important to her.  Fine.  But we didn't put lipstick on her
for a reason that had nothing to do with laziness or not caring. I had
to hunt through a big, messy drawer in the bathroom to find the
lipstick and when I did, I found an old smashed up/ dried up tube, very
difficult to use. 

Hayes' daughter, the most amazing, caring person, came in one day and
put labels on all her father's dresser drawers, making it easy for us
to find (and put away) Hayes' clothes. This made dressing him much much
easier that dressing the other folks, even though Hayes' family had
asked us to dress him in snazzy, many-layered outfits (and not sweats,
e.g.)

What do you think of this kind of approach? 
  

    
>>>How can it not be a legal issue for one person to end another's
life on quality-of-life grounds?

What I meant is a person's decision to end his or her life and a
person actually ending his or her own life are not legal issues, as I
see it.  If that person needs assistance -- and if you believe that the
essential act is outside of a criminal definition -- then helping that
person carry out his or her wishes is not a legal issue either.

>>>Who decides when dementia has become a fate worse than death? 

The only person who can make that decision with complete moral
integrity is the one person who is no longer competent to make that
decision.
  

    

> new toothbrush ... new tube of toothpaste ... make sure it's out in
> the open ...

When I was having so much difficulty with the toothbrushing issue, 
my mother was too confused to be allowed access to toothpaste. 
She rubbed it into her hair, which is a drag but probably
not a disaster. However, she also put it around her eyes, I think she
thought it was makeup. Then it'd get IN her eyes, which hurt. 

Furthermore, both she and her roommate would happily pick up their
toothbrushes, if left out and available, and start brushing. Then they'd
dip them in the toilet instead of running tap water on the bristles, and
go back to brushing some more.

So no, leaving these items out in plain sight wasn't a good plan for
my mother or her roommate, unfortunately. 

Happily, my mother is no longer in the facility where I had all these
problems getting her basic hygiene needs met, so this is all theoretical
for me at this point. She's now in a place where, when I noticed her
teeth weren't getting brushed, I asked the staff to please try to be
more attentive to her oral hygiene, and bam, they were right on top of
it. 

I think there are several reasons why she's getting better care now.
For one thing, the caregivers get paid considerably more ($14 an hour
compared to the $8 or so caregivers got at the other place). Plus, 
staffing is better, with 3 caregivers for 12 residents as compared to
3 caregivers for 27 residents in the dementia wing at the old place. 

These two factors probably have a lot to do with why there is so little
staff turnover at this place where she lives now, too. I definitely
see a difference in the way the caregivers interact with the residents.
The caregivers can actually stop and catch their breath sometimes, 
they even have time to take individual residents on walks or to otherwise
engage in one-on-one socializing.
  

    

Decent pay and decent staffing levels are not magic but all too rare.
I'm glad you're mother is getting decent care now.
  

    
Adequate staffing is why she's getting better care, I think.  3 for
12??? Wow.  That's incredible.  I was one person taking care of up to
14.  I don't think a person making $8 an hour works less hard than a
person making $14 an hour...although it may be that if the facility has
"invested" in the worker to the tune of $14/ hr, she or he gets better
training and stays around longer (and so is more skilled).

Sorry the toothpaste suggestion was so off base.  I never encountered
such creative use of a product.  The people whose teeth I had to brush
would not have known how to take the cap off the tube.