Inkwell: Authors and Artists

    
SCOTT...so sorry to have missed you at Wordstock.  How did your
session for teachers go? Mine was for writers -- billed as "A 12-step
program for writers: How to stop self-sabotaging and start writing."

Online convos, blogging, etc., btw, come under the category of
self-sabotage!
  

    

>>>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.

Talk about a terrible bind!

I know a woman who died of Alzheimer's recently. I mean, it's not that
she had Alzheimer's but it was pneumonia, or a stroke, or cancer that
took her away. She died of end-stage Alzheimer's.

Like my mother, she did all the right things. Took good care of her 
health, got plenty of physical exercise, mental exercises, yadda yadda. 
She was so dang healthy, so strong, that none of the usual suspects came 
along and killed her. 

Instead she spent the last year of her life in bed, curled up
full fetal, her hands clenched so tight that the flesh of her palms
were infested with a fungus. She was essentially insensate, non-responsive,
yet she still swallowed. So she was spoonfed some kind of gruel and
turned in bed every couple hours so she wouldn't get bedsores. 

Many of us have made the difficult decision to have a much-loved pet
euthanized when it's clear that the pet's quality of life is non-existent
and that the animal has no chance of recovery. 

Yet we cannot offer a human beloved the same grace of a departure from 
an equally unacceptible existence. 

Because of the sanctity of life? Then why aren't we honoring those who 
are nearing the end of theirs by providing well-paid, well-trained
people to care for them? 
  

    

$8/hr is criminal. I would have to pay $10/hr to hire an illegal immigrant
off the street around here to wield a shovel.
  

    
<"A 12-step program for writers: How to stop self-sabotaging and start
writing."  Online convos, blogging, etc., btw, come under the category
of self-sabotage!>

OK. Shame on you, Lauren, enticing me away from my writing to engage
in some online convo-blogging with you here. (You need to do a future
seminar on when to Kevorkianize a story or chapter that rambles and
forgets itself and needs to die). 

On the drive down to Portland, I stopped and saw Mom and had a chance
to talk at length with the young woman who is the prime caregiver at
the adult home where Mom lives.  Our on-line discussion here has helped
me focus better on what to ask and look for.  For example, I asked her
about what they do with group music.  She assured me that they do have
music sessions as well as regular exercising, etc.  It's tough for
most of us to spend large chunks of time monitoring whether what is
"advertised" is actually what is "delivered."  Mostly, I rely on
trusting my instincts with regards to the caregivers.  The family that
owns this home and business (the parents of the young woman I talked
with) also take care of their own aging mother/grandmother in this
house.  The decision on where to place a parent is not unlike finding
childcare for our kids.  It's hard to ever know what happens in the
care facility when we leave.

As for the Wordstock Literary Festival, on Friday they held a
"Wordstock for Teachers" program.  My seminar was on
Modeling/Collaboration.  I taught primary and secondary teachers how to
write a story together with their students, allowing the students to
make as many of the authorial decisions as possible. Last summer I
published an article in the magazine "Teachers & Writers" about my own
experience with this process.    

Wordstock was a great event and I was able to make some good contacts,
see my favorite writing professor (Ron Carlson), and connect with
fellow MFA alums from my creative writing program.
  

    
I'm with you, Cynthia. If we (as a society) truly believed in the
sanctity of life, we would do everything we would to honor and care for
the elderly.  We would also not invade countries and kill their
citizens.

I think this whole end-of-life thing -- from the quality and variety
of eldercare to Death with Dignity, from the difficult
philosophical/moral questions to the practical concerns needs our (as
in babyboom generation) attention right now.  It's not enough to
struggle with -- and decry -- what is happening to our parents.  We
have to become activists for our own sake.  You want the right to end
your life on your own terms?  You want a loving, caring family member
to help you exit the world when it's time?  (I am talking to anyone out
there reading these posts...and I'm talking to myself too, psyching
myself up for the task) If this is what we want, then now, while we are
active and healthy, full of energy, now is when we make our move.  Now
is when we join those groups working to change legislation, working to
improve eldercare, working to create alternatives to what we currently
have.

On Wednesday I am going up to Salem, the state capital, to testify at
a legislative hearing on the quality of eldercare.  We need to be doing
stuff like this -- being vocal, making waves.
  

    
>>>$8/hr is criminal.

Alas, no.  $8 an hour is almost $3 an hour more than the federal
minimum wage.  It's what we pay the people employed in eldercare and
childcare.   $800 an hour is what R.J. Reynolds pays its PR consultants
to come up with ways to defeat the cigarette tax in Oregon.   (The
money was to be spent insuring uninsured children) 
  

    
I have a meeting with the owner of my aunt's adult family home
tomorrow.I will frame questions as,"How can I make it easiest for...to
happen?" My biggest question,though,is,Why isn't Courtenay getting out
for walks on the days when there are 2 caregivers?This is,I realize,a
luxury concern.

I hope I am never in the position of being spoon-fed gruel and turned
regularly,but I would not work for a right to have someone choose my
time of death.I can't picture any way to delegate that job and protect
people who have no loved one to trust with that decision.

I'm also not sure that pushing for specific requirements for eldercare
without having the minimum wage be a living wage will result in as
much change as the system demands.



 
  

    

I did not mean "criminal" in the legal sense but the moral sense.
  

    
From an off-Well Reader, Joan Dickey:

Thank you for an insightful book.  My husband was in a care facility for six
months and I was in awe of the overworked, underpaid caregivers.  After
watching the activity for a month, I decided to time my daily visit in the
evening after work.  I fed him, brushed his teeth, and helped him change his
clothes and I put him to bed.  This allowed me to be with him in a caring
situation and at the same time, lightened the workload for the paid
caregivers.  My assitance was appreciated.
  

    
Excellent point by Joan, the Off-Well Reader.

If you visit during a time you can help you 1) have something to do
(You are used to sitting and talking...that's not going to work now) 
2) you are making sure certain tasks are completed with loving care 3)
you are helping caregivers, giving them a few minutes of time to help
others who have no loving relatives who visit and help.

I always visited my mother at mealtimes.  
  

    
Katherine:  Excellent strategy >>I will frame questions as,"How can I
make it easiest for...to happen?" 

Oregon has a very aggressive program to get all people, esp seniors,
to complete "Advance directives."  If you complete and sign (and have
notarized) and advanced directive (you can create the language
yourself), you at least have some control over the end of your life. 
Right now, A.D.s guide the use of extraordinary measures to stay alive
(ventilators, feeding tubes, etc.)  You say what you want or don't want
and those orders have to be followed when you can't speak for
yourself.  You are not entrusting a relative or a doctor to make the
decision.  You have made the decision beforehand.
  

    
yeah, but those often dont hold. as i have mentioned elsewhere,
my mother signed an advanced directive, and all three of
us who had POA over her (me, my sister, my cousin a retired md) ---
plus our gcm who had witnessed many conversations with my mother
when she was till lucid  on these matters ---  her wishes
were constantly overrided, in terms of things like keeping
her on cvd meds and putting her on antiobiotics. and my/her
situation is not unique. true, we werent at the feeding tube/
ventilator stage --- but it was so clear how unhappy my mother
was, and it had been so clear to all of us charged to carry
out her wishes that she wanted to be released (as my cousin
roy said, when he saw her 'myra would NEVER have wanted to
end up like this!' --- having knonw my mother even longer than
i, as he is 12 yrs older than me...) --- but all the legal
paperwork didnt help. what it took was changing facilities,
and changing docs. <end rant>
  

    
In Oregon and Washington we are fortunate to have the POLST,Physician
Orders for Life-Sustaining Treatment,which *is* legally binding-it has
to be where EMS workers can see it,as well as in hospital records.It is
specific as to treatment:none,including no antibiotics or
hydration;comfort care only,or everything up to and including
rescusitation.

It does *not* cover the situation of being able to swallow gruel,since
spoon-feeding is not an extraordinary measure.For that we still need a
revolution in wages and attitudes.
  

    
another enlightened thing about the pnw, POLST! bravo...
  

    
Thanks for jumping in there with a clarification, Katherine.  It is
INCREDIBLY important that people look at what Oregon and Washington
have done and replicate it in their states.  It is true that POLST does
not (now) cover some of the conditions associated with end-stage
Alzheimer's, but that doesn't mean it couldn't, over time, evolve in
include such situations.  Death with dignity is the goal.  I'm telling
you all, this is worth going to the streets for. 
  

    

Absolutely!

Lauren, I have a couple more questions for you.

1) With Christmas coming up, I wanted to give individual small gifts for the
caregivers who tend my mother. If you were buying presents for 8 caregivers,
without a deep knowledge and understanding of their personal tastes and
preferences, what would you think to get them?


2) And on a totally different subject, now that "Dancing with Rose" is
out there in the universe, what's your next project? Do you have another
book in the works that you can tell us about? 
  

    
And has somebody bought the film/TV rights?

I think that $8/hr wage is fairly standard for cna's and personal care
attendants.  Yet Robt Wood Johnson did a big survey that showed that
facilities actually pay about $2500 each time a worker leaves and a new one
must be hired and (sort of) trained.  And of course, in some places 100
percent of that workforce turns over in a year.  It would be more cost-
effective to invest in some real training, in enough workers to do the job
well, in oppties for advancement -- even if the wages didn't rise much.  And
of course, it would be so much better for the residents, too.
  

    

BTW, though federal minimum wage is lower, California minimum wage is
currently $7.50 an hour, and it goes up to $8 an hour on January 1. These
eldercare chains in California that have been claiming they pay "above"
minimum wage are going to have to either increase their pay scale for
caregivers or quit acting like they're financially magnamous to their
employees.



I'm sorry to interrupt while we still have several questions (a couple of
them mine!) still on the table, but I wanted to acknowledge that we've
reached the two-week mark of this two-week conversation with Lauren Kessler.
Lauren, I hope you'll be able to respond to what we've asked, and since
this topic will remain open indefinitely I also hope you can stick around
longer.

However, it may be that other things are demanding your time and attention,
Lauren, In that case, I want to say that this has been a wonderful discussion 
and I thank you for joining us. Thanks, also, to Katherine Spinner for 
leading the interview so ably.
  

    
Yes, thank you, Lauren, for this enlightening discussion on a most
difficult subject. It was definitely helpful for me.  

Good luck with this book and your future writings!
  

    
I came in a little late, but this has been really informative for me. Thanks
for taking the time to ask and answer!
  

    
Lauren,it has been a privelege to be here with you.I hope to meet you
in Seattle one of these days (I am so disappointed that I didn't know
when you were here with "Rose").Thank you for taking time out from your
current project to join us on the Well.
  

    
My thanks as well.
  

    
>> about individual small gifts for the caregivers.  Before I was one,
I would have said something like lovely soaps or moisturizers or bath
gell.  Now I think:  Starbucks or Target gift cards...even $5.  And HOW
WONDERFUL that you are thinking about the caregivers.  Even if you
gave each only a card, you can't imagine how meaningful that would be. 
  

    
>>what's your next project? Thanks for asking!  I am in the midst of a
book about the emotionally complex, high-drama, vital relationship
between mothers and their tween/ teenage daughters.  I have been
immersing myself in teen girl culture -- and specifically in my own
13-yr-old daughter's life -- for the past year.  And...contrary to what
you might think...this work has brought us closer.  Workingn title,
courtesy of my favorite Green Day song, "Something Unpredictable."
  

    
>>California minimum wage is currently $7.50 an hour.  Oregon's was
$7.50, now up to $7.75.  That's about $16,000 pre-tax for a 40-hour
work week, 50 weeks of the year. OMG.