Inkwell: Authors and Artists

    
I'm honored to announce our next guest, author and journalist Lauren
Kessler. Lauren's latest book -- "Dancing with Rose: Finding Life in the
Land of Alzheimer's" -- is her first-hand account of working as a caregiver
in an Alzheimer's facility.

Lauren is also the author of four other works of narrative nonfiction: the
Washington Post bestseller "Clever Girl," The Los Angeles Times bestseller
"The Happy Bottom Riding Club," "Full Court Press" and "Stubborn Twig."
"Stubborn Twig" was just chosen as the book for all Oregon to read in honor
of the states 2009 sesquicentennial.

Her journalism has appeared in The New York Times Magazine, Los Angeles
Times Magazine, O magazine, newsweek.com, salon.com and The Nation. She is
founder and editor of Etude, the online magazine of narrative nonfiction,
and directs the graduate program in literary nonfiction at the University of
Oregon.

Joining Lauren to lead the conversation is Katherine Spinner. Katherine is a
niece and aunt who lives in Seattle with two cats, too many books and a
stash of knitting yarn. In June she moved her aunt, who has Alzheimer's,
from assisted living into an adult family home. She has just moved her into
a different home which has a locked yard.

Katherine has worked in childcare and with adults who have cognitive and
multiple other disabilities, fields that share the low status and low wages
of eldercare.
  

    
Delighted to be here (a word that has little meaning in virtual
conversation)...and ready to talk.
  

    
Lauren,hello.

"Dancing With Rose" comes at Alzheimers from 3 perspectives:your
experience with your mother,your day to day experience with the
residents of Maplewood (including your shift from the correcting mode
to the validation model of responding to their confusion) and the
working conditions for the caregivers at Maplewood.I'll begin this
interview with a question about each of these areas.

How are you feeling about your karma with respect to your mother these
days?Are you currently involved directly with anyone who has
Alzheimers?I wonder about whether the experience of caregiving after
estrangement is different with Alzheimer's than with ailments that
leave a parent's mind intact.Do you have any sense of this?

You write about the medical aspects of Alzheimers,including the brain
changes and the various drugs that are (very expensively) available to
(possibly) address them.Does pressing for more research into diagnosis
before autopsy,and more drugs,detract from working towards changes in
care for people living with Alzheimers?

My first question about your experience as a worker is not the
deepest:I'm eager to know whether any of your former co-workers have
read your book.Are you still in touch with anyone who is left from your
time working at Maplewood?Have you heard from any former RAs?
  

    
The second-to-last sentence above should read:

Are you still in touch with anyone still working at Maplewood who is
left from when you worked there?

I imagine many of us would like to know about Eloise,too.
  

    
Many questions...all good.  Let me take a stab at them, one by one.

How are you feeling about your karma with respect to your mother these
days?

I feel now that I may not be coming back as a fruit fly or some sort
of fungus. I am hoping perhaps for something mammalian.  Seriously, my
soul feels lighter after having had the opportunity -- I want to say
privilege -- of being a daughter to other people's mothers...a better
daughter than I was to my own.

Are you currently involved directly with anyone who has
Alzheimers?

I am not sure about "directly," but I visit "Jane" at Maplewood.  She
is the last of the people I was close to still at the facility.

I wonder about whether the experience of caregiving after
estrangement is different with Alzheimer's than with ailments that
leave a parent's mind intact.Do you have any sense of this? 

I am betting it is VERY different.  My mother was not carrying any of
the baggage of our past relationship with her into her last years.  I
was just someone who visited -- not her snotty, ill-behaved, errant
daughter.  On the one hand, that's a wonderful burden not to have to
bear.  On the other, it means no Hallmark Movie of the Week ending for
us, no tearful rapproachment.  It left the estrangement part firmly on
my shoulders alone. 

Does pressing for more research into diagnosis
before autopsy,and more drugs,detract from working towards changes in
care for people living with Alzheimers?

I would never ever want to say we should pull back from medical
research.  But I would say that we have 5 million people in the US with
this disease, living with this disease, and we MUST pay attention to
the kind of life they are living.  We can and MUST learn from it...and
deal with it -- even as we are trying to obliterate the disease.  There
can be no meaningful change in eldercare without reforming --
revolutionizing -- our health care system.

Are you still in touch with anyone still working at Maplewood who is
left from when you worked there?

None of the RAs I worked with are still there.  Neither are the
administrator, the activity director, the care coordinator or the
nurse.  The hairdresser still is, though! (You'll just have to read
what I say about her in the book.)  As I already mentioned, "Jane" is
the only person I was close to who is still at "Maplewood."  "Eloise"
died this spring.  I had spent some time with her a few weeks before. 
She was very quiet by then.   
  

    
I would say we that if we have 5 million people in the US who have
Alzheimers we probably have at least twice as many who are living with
it as caregivers.Some are caring directly for a relative at home,others
are one step removed from that but still under the stress of managing
care and of the chronic grief that can go along with watching a loved
one lose more and more pieces of mind and spirit.

When you started working shifts at Maplewood,how did your
relationships with the RAs change?Did the people you trained with know
about your privelege of being able to pick your days and shifts?

You described a staff meeting which was all about supervisors talking
at RAs.How much of a difference might it make at a Maplewood if the
direct care staff actually had some time to talk with each other?(Did
people start getting their breaks when the float position became
full-time?)Could anything short of a living wage improve morale to a
point of reducing turnover?

You did some reading on the validation model of talking with people
who have Alzheimers,that is,not correcting their perceptions all the
time but responding to them in ways that respect their experience:for
instance,figuring out whether Marianne is at work or at a spa on any
given day,rather than telling her where she is.

Did any administrators at Maplewood ever mention this approach?It
seems like some of the RAs came to it by trial and error,or by
grace-I'm thinking of Cindy and the baby dolls.Are you aware of any
institutions that practice the validation approach from the top down?

I wonder how much we can hope to change the culture of eldercare
without changing the working conditions of those who provide it.Do we
need to fight as hard for a living minimum wage as we do when we
advocate individually for our relatives?
  

    
When you started working shifts at Maplewood,how did your
relationships with the RAs change?Did the people you trained with know
about your privilege of being able to pick your days and shifts?

Everyone knew I was a writer.  Sometimes RAs from other units would
come to me and say "I've gotta tell you what happened today.  It would
be great for your book."  The fact that I was writing a book about the
work they did made them feel valued, I think. But mostly, to tell the
truth, it was a non-issue. What mattered was:  Did I have their back? 
Could I be counted on in a tough situation?  Was I strong enough to
help lift a heavy person? After an initial fascination with the
project, they just took me for granted.  Jasmine, the RA I became
closest to, certainly knew I could pick my days and shifts.  I don't
know why she wasn't resentful -- I probably would have been in her
place -- but she wasn't.

How much of a difference might it make at a Maplewood if the
direct care staff actually had some time to talk with each other?(Did
people start getting their breaks when the float position became
full-time?)Could anything short of a living wage improve morale to a
point of reducing turnover?

I don't know the answer to these very good questions.  The lives of
the people who worked as RAs were so stressful... there was no much
going on with housing and children and cars that broke down and no-good
boyfriends... that it's hard to imagine the mental space (even with
more time) to devote to brainstorming ways to make the facility better.
 A living wage -- and health insurance and paid sick days -- are, as
you suggest, ESSENTIAL...although I have to say, in the absence of all
that, the morale was actually amazingly high.

Are you aware of any institutions that practice the validation
approach from the top down?

I didn't do that sort of research, so I don't know.  I do know that
many of the RAs I worked with and observed understood and practiced
validation not because they'd read about it or gone to lectures (or
heard about it at staff meetings) but because of their own innate,
intuitive, nurturing way of interacting with the people in their care.

I wonder how much we can hope to change the culture of eldercare
without changing the working conditions of those who provide it.

I don't wonder at all!  I am CONVINCED we cannot change the culture of
eldercare without changing: 
1) our dismissive, impatient and basically disrespectful attitude
toward elders (not OUR elders, of course...our own grandmas or
aunts...but all those other codgers out there gumming up the works --
or so our culture seems to think) 
2) our absurd, inhumane health care system and private insurance model
that makes decent health care unaffordable to many, including the
elderly.
3) and, finally, to your point:  the way we SAY we value caregivers
but don't...so yes, living wage, sick days, insurance, even, gasp, paid
vacation.
  

    
As it says in my bio,I just,one week ago today,moved my barmy old
auntie out of an adult family home that she had walked away from twice
into one with nice yard that is securely fenced.The weekday caregiver
was very sad to see us leave,and sat in the living room quietly teary
as Courtenay and I waited for our ride to the new house.One part of me
thought,This is *not* helping and is *so* unprofessional! Then I
thought,who in this field earns professional wages?then,is
"professional",as in detached,do I want caregivers to be?

At the new house,the owner is hoping to find a health plan she can
afford for the caregivers at her 3 homes.I might not have liked her so
well in her direct-care days,when her family lived in her first adult
family home-she is not a particularly warm fuzzy person-but I'm
delighted with her as the person in charge.My aunt is in the house she
had purpose-built for an adult family home and the caregivers have an
entirely separate upstairs to live in when they're not working. 
  

    

(NOTE: Offsite readers with comments or questions may send them via email to
<inkwell@well.com> to have them added to this thread.)
  

    
Lauren, welcome, and thank you for immersing yourself in this
important project (ala  Norman Mailer as a war protester in "The Armies
of the Night.")

Do you make a distinction between "Dementia" and "Alzheimers"? 
Considering that there is no cure, both terms seem to be overlapping
catchall medical categories for the precipitous decline of mental
functioning, usually not occuring until those afflicted are in their
late 60s at the earliest.  If there is a difference between Alzheimers
and Dementia, have you seen any difference in the way these patients
are treated medically?  

I have noticed that the afflicted are segregated from other elderly,
and, in the best cases, placed in a care situation where bodily needs
are met, some basic mental and physical stimulation is given, but, as a
practical matter, the patients spend their days witherinng
exponentially towards death.  Are there practical options for enhancing
the quality of life of Alheimer's patients?  Or, on the other hand,
does heavy stimulation of those unable to process such stimulation, or
even remember the experience, really make a difference to the patient's
quality of life?
  

    
Thanks for your questions, Scott.  I'll try to answer...but want to
say that I am NOT a doctor. (Well, I have a Ph.D. in history, and
anyone with a history sickness can come to me for diagnosis and
treatment.  Otherwise, forget it.)  I am very comfortable answering
questions about writing and craft, about how I did what I did, and why.
 But my knowledge about the disease, etc. comes only from the kind of
research and reading a non-expert can do and, of course, my
observations.

That said...

Do you make a distinction between "Dementia" and "Alzheimers"? 

The medical literature makes a distinction and often facilities make a
distinction.  I do too.  It has nothing to do with cure or treatment
-- since neither are options for whatever sort of dementia a person
suffers from.  Instead, it has to do with expected behaviors and how to
"manage" people, what they need, etc. I should say that occasionally
dementia-like symptoms can be caused by drug interactions -- with
symptoms disappearing once the medications are discontinued or
adjusted.  Otherwise, take Alzheimer's versus what's called "vascular
dementia" or something known (informally) as "alcohol-induced
dementia."  It's possible -- I've seen -- these sorts of dementias
cause pretty severe memory problems...but often not the wandering
issues or the personality changes of Alzheimer's.  So thre is a real
difference.  Alzheimer's is definitely a disease unto itself, with its
own etiology, its own identifiable brain changes, its own behaviors.

Are there practical options for enhancing the quality of life of
Alheimer's patients?

ABSOLUTELY.  I hope (and here's a plug...probably not the last) you
and others will read my book, Dancing with Rose: Finding Life in the
Land of Alzheimer's.  You'll see some of those options at work.  And
you'll see how much life is left when you think there's no life at all.
  

    

Thanks for your thorough responses to these questions, Lauren. I'd like to
poke at one of them a bit, if you don't mind.

My interest in the issues surrounding Alzheimer's/dementia and eldercare
are personal. My mother has Alzheimer's, the first signs of it showed up
fifteen years ago, and she's gone from being slightly impaired to near
total dependence. Since late 2002, after her escalating needs made even 
24/7 live-in care inadequate, she's been housed in care facilities
designed to tend to her particular needs. 

I'm not your average family member who pops in for 20 minutes once a
week. I have spend hundreds upon hundreds of hours hangin' out in these
places. I've served meals, wiped dirty bottoms, comforted weeping
residents, sat with the dying, and generally been deeply involved in
the daily lives of all the residents where my mother lives. 

I say all this so you'll understand that I'm not all "let them eat
cake" about this. I'm truly concerned about the caregivers' plight,
yet I'm about as stretched as I can be, too.

You say that caregivers need:
>  A living wage -- and health insurance and paid sick days

I agree with you that they're badly paid and deserve better. The question 
I have is: where does that money come from?

The cost of housing a dementia patient is steep. You quoted monthly
rates at $4500 to $8000 in your book, and that matches my experience
here in the greater SF Bay Area.

In "Dancing With Rose" you mention that the administrators at Maplewood
are earning what amounts to about $12 an hour. The floor staff is
making minimum wage.

Do you cut the administrators' wages to supplement that of the caregivers?
Do you scrimp even more on the food budget? Get rid of the gardener and
let the landscaping go to pot? Do you raise the monthly rate? 
  

    
How can we have economy of scale without building massive
institutions?That is,how can administration be effective with larger
groups of caregivers?The adult family home model around here seems to
have one owner/administrator for 2 or 3 houses,and seem to have less
turnover than Maplewoods,or than many child care centers.Of course,they
also take only private-pay residents (some will convert to Medicare
later on) which makes them inaccessible to most folks who are scraping
by on minimum wage and will have proportional social security.
  

    
I'll order your book, Lauren, and hope I can read it before this
on-line interview ends.  I'm also a writer, so I guess I bring a
similar approach to investigating Alzheimer's/Dementia.  My brother is
an M.D., so when both our father, who died two years ago, and our
mother, who after he died, started her rapid decline, went for
diagnosis/treatment, I was surprised how little help there was for
either of them, especially pharmacologically.  The medical criteria for
diagnosis distinguishing Alzheimer's and the different types of
dementia is also surprisingly muddy. All four of our grandparents lived
to be approximately 90, so when both of our parents, who have very
different personalities and hadn't been together as a couple since
1968, began deteriorating in their early to mid-70s, we were shocked.

I have many questions, but one that intrigues me is the "use it or
lose it" hypothesis, meaning, of course, that if we let our brain get
lazy, Alzheimers or dementia will be more likely to occur.

I'm 52, and for most of my life--by looking at the lifespan of my
grandparents--I expected to live to be about 90.  It's been a rude
awakening to now look at both of my parents dying in their mid-70s (Mom
is in a bad state of decline). Not that we can ever know, but I now
wonder if I can reasonably expect to live for twenty more years or
forty.

As a writer, the idea that time may be short keeps me working, in part
because I hope that the mental stimulation will serve as a preventive
measure toward a similar affliction.  With your mother having had
Alzheimers, have you had similar thoughts for yourself as a writer?
Also, what is your take on the "use it or lose it" concept?
  

    
I am pretty much convinced that,except for early-onset,Alzheimers
strikes at random:my aunt did all the things that may be
protective,including playing Scrabble well into the progression of the
disease.

I wish there were as much work going on in improvement in quality of
life for people with Alzheimers,and the multitude of relatives who care
for them at home,as in studying brains.

In her book,Lauren writes about one thing that makes life easier for
people with Alzheimers:Caregivers can give up correcting them,trying to
bring them into our reality.I suspect this is easier for non-family
caregivers,who aren't grieving the person who used to be.But more
information for families could be helpful.We could use a lot more
groups for caregivers that meet in a place where their relative could
be under someone else's care for a few hours.

More readily available respite care could lengthen the time before we
need to place people,or be placed ourselves,into the Maplewoods of
eldercare.
  

    
To your comments and question first, Cynthia, which I'll rephrase
simply as:  Where does the money come from to pay caregivers a living
wage?
You ask...
Do you cut the administrators' wages to supplement that of the
caregivers? Do you scrimp even more on the food budget? Get rid of the
gardener and let the landscaping go to pot? Do you raise the monthly
rate? 
I say:  None of the above.  Eldercare is a $3 billion a year, booming,
booming industry that rakes in enormous profits for the corporate
chains that own and operate thousands of facilities.  Businesses are
entitled to make a profit. Yay, capitalism!  They are not entitled to
gouge the elderly and their families and to keep fulltime, hardworking
(mostly) women living below the poverty line so that companies can earn
obscene profits. End of rant.
  

    
I hear you, Katherine, about the economies of scale issue.  My
response is that we should not try to tinker with a bad system.  We
should not be thinking in terms of reform, of making what we have more
efficient.  We should be thinking revolution.  I have some thoughts on
that in a piece I wrote for the Sunday Oregonian (Oct. 28).  There's a
link to it on my website, www.laurenkessler.com.
  

    
Our experiences are similar, Scott.  Three of my four grandparents
lived into their 90s.  I had a nonegenarian great grandmother, and a
great-great, known as "Old Oldie" who lived to 102.  I assumed my whole
life that I'd follow in their footsteps.  Then my mother died of
Alzheimer's at 77. I just wrote about this -- the disconcerting feeling
that you are next in line -- and I'd love you to read it and tell me
what you think.  It's in the autumn issue of Etude, an online journal
of narrative nonfiction that I founded and edit. The essay is called
"The Good News about Bad News."  You can find it at: 
http://etude.uoregon.edu/autumn2007/craft/

And for the record, I DO believe in "use it or lose it" -- for the
body, brain and soul.
  

    
Respite care!  Absolutely, Katherine. Maplewood did a little of
that...taking in a person or two for part of a day while the at-home
caregiver had a breather, and I think you're right: It can make a HUGE
difference for a 24/7 caregiver.

About "validation" rather than "correction":  It is SO very much
harder to validate when it's your own family member.  Yet, if you can
just force yourself to, you will see what an enormous difference it can
make in mood (both the other person and yours!) and the quality of the
time together. 
  

    
<< as I discovered in Dancing with Rose, there is real life, vibrant,
quirky, intensely experienced life, lived by those who have
Alzheimer's. We are very much more than the sum of our remembered
pasts.

It is not so bad to look this stuff right in the eye. Really.>>


Nice piece, Lauren. I went to Seattle to see my Mom a week-and-a-half
ago. Mom, who because of her hip replacement can't walk, was sitting in
her usual place on the couch.  Next to her seat is a large mirror. 
She saw me in the mirror and started to wave enthusiastically.  I said,
"Hey, Mom, it's me, over here."  She kept waving in the mirror, before
finally looking directly at me. 

"How was your trip?" she asked.  I was amazed that she remembered that
I had been gone for the first part of October.  Then she introduced me
to the other ladies in the home as her brother.

"Well, I'm actually your son, Mom."

"Oh, well, I'd be happy even if you were my brother," she added when I
bent down to hug her.

"And I'm happy to be your son."

After a minute she looked back at the mirror and then at me and said,
"it was so strange to see you out of the car window all of the sudden
like that.  It was like you appeared out of nowhere."

Then she looked at the mirror again and back at me, a touch confused.
"Oh, whenever that was when I was on that car ride."


It's only been a year-and-a-half since we moved her from her condo to
an independent-living care center, a year since we took the car keys. 
The precipitous decline came about six months ago just before we moved
her to this adult home with five other women. Aside from a loss of
motor skills in the ability of her mind to tell her legs to walk, my
biggest question in her decline is this scrambling of memory.  She
remembered I was just on vacation, then thinks I'm her brother.  To me,
it seems as though the separation between her dream state and her
waking state is deteriorated.  The connections she makes are not unlike
the odd associations we make when we're in our dream state. 

Do any of you know of any research that has gone on with
Alzheimer's/Dementia from this angle of a blurring of our dream state
and wakeful state?
  

    
That's such an interesting question, Scott, and such an astute
observation.  I am betting that very little (or no) research has been
done in this area because researchers are not focused on understanding
the experience of Alzheimer's.  They are focused on finding its cause
and cure.  As I think I wrote earlier:  Hooray!  We ALL want a cure. 
But meanwhile, isn't there something to be, uh, LEARNED from this
disease??  Your observation is a case in point.

I like your notion of a blurring between waking and dream
consciouness, especially if we think of this as a transition stage from
life to death.  I also think, maybe, it has to do with the way a
cognitively impaired brain is still very smart.  So your mother's brain
is having problems making these chronological, logical connections. 
What is taking over from pure cognition is intuition and emotion.  She
is NOT confused about what you mean to her.  She feels -- FEELS -- a
closeness, a familiar (as in family) tie. That's the emotional,
non-impaired part of her brain helping her connect with you.  What do
you think of this?

btw...I love the story you told.
  

    

Yes, that's a fascinating story about the mirror, Scott. My mom is much
further along in terms of her condition. She can no longer communicate much
verbally anymore, even in the disjointed, lost-in-time way you describe your
mom's efforts.

In fact, trying to have a conversation with her -- I mean a conversation
like any of us would define it -- isn't possible anymore. However, there
still are ways she and I can connect. As you note, Laura, with Alzheimer's
the person no longer has a clear recollection about who's who, but the
feeling of connection remains.

One thing I find is hugely helpful is music. My mom continues to respond to
music in a positive, happy way. Here's a video I shot of her about a year
ago:

  http://www.youtube.com/watch?v=PFO74ok-23I

The sound didn't sync up well when I uploaded it to youtube, and the
lighting is poor so it's grainy, but you can still get a feel for how
we can reach our demented loved ones using other means than back-and-forth
conversation.

What's been your experience with music, Lauren, as far as how your
dementia residents at Maplewood responded to it? 
  

    
Lauren,I'm so glad you posted the link to your Oregonian piece,thank
you.I would feel more optimistic about a revolution in eldercare if we
had seen childcare improve,for non-middle class children and for their
caregivers,during the years that boomers had children in day care.

Scott,my aunt often says,when I appear,"I was dreaming that you were
here!"She has also said several times,just lately(since she moved for
the 2nd time in 4 months),"This all feels like a dream,not like it's
real at all." She has said this when we were walking outside the locked
fence of the adult family home.
  

    
Lauren, on the issue of entering the patient's reality, rather than trying
to force people with Alzheimer's to be "oriented" --

I was struck by your description, in "Dancing with Rose" (lovely book, mazel
tov), of elderly ladies with baby dolls, the way the dolls engaged them and
even helped connect them to other residents.  It's exactly the sort of
solution that makes some of us Boomers uneasy because we somehow think it's
paternalistic, not treating our seniors as Adults.  Then, just today, I
heard of some assisted living researchers and reformers introducing more
Montessori-type activities for people with dementia -- residents playing
with poker chips and using tongs to lift little balls in and out of ice cube
trays.

Do you think our well-intented but possibly misguided attempts to avoid
treating people with Alzheimer's as if they were children may be backfiring?
 They'e NOT children -- but they may enjoy some of the activities and
approaches that children enjoy.  Maybe we should make our peace with that,
and spread the word?
  

    
of course i have many abherrent opinions here --- but one of
the things i took issue with, with the care my evil mother
received for her dementia (she had a mixed diagnosis: alz/parkinsons/
vascular --- which we only found out was mostly wrong after an
autopsy. turns out to be vascular all the way...but never mind)
is that she never, as an functional adult, liked those
montessori/crafty/singalong things. and she didnt like
them any better as a demented person. it used to drive me
nuts, to enter the nite-of-the-living-dead preschool that
was the daytime dementia activity cent

the fantasy here is to create activities for the demented
that suit their individuality.

with of course the zillions of dollars that are the
peace divident (snort)
  

    
One other thing about a mirror image...a guy I interviewed for an
LATimes story I wrote about Alzheimer's (before I wrote the book) told
me this story:  He was still caring for his wife at home.  They got
dressed up to go out to a concert -- more about MUSIC in a moment --
and, walking down the street at night, she caught a glimpse of herself
in a storefront window.  "THat woman looks really good," she told her
husband.  

Now about MUSIC.  I found that music was the core of communication and
connection. It is why Rose and I danced.  It was an everyday part of
my relationship with the man I call Hayes in the book and was central
to the connection I made with another resident.  At the end of my book,
I recount a scene with my mother, which was also about music. So, yes!
yes!