Inkwell: Authors and Artists

    
Paula...about the baby doll thing -- and the larger issue of
infantalizing the elderly.  I felt very uncomfortable with the baby
dolls too.  I had encountered them at my mother's facility as well. 
But the ah-ha moment was watching the women talk to one another or
nonverbally interact or just calm themselves by rocking the dolls.  I
realized:  This isn't about me, it's about them.  I don't have to feel
comfortable with this.  They feel comfortable.  And clearly, they did.
  

    
Paulina...I HEAR you.  I remember being told, when I started working
at Maplewood, that I should put tapes of the old Lawrence Welk shows in
the VCR for the residents to watch.  My grandparents HATED Lawrence
Welk.  I mean they really hated the guy and his Royal Canadians and the
whole show. I thought...I can't do this. It could be that some of
these folks, in their previously undemented lives, also hated Lawrence
Welk. So we watched gorgeous travel documentaries of New Zealand
instead.  
  

    
But I want to take exception -- a big exception -- with the "Night of
the Living Dead" reference.  I know it is hard to see when the person
is your own flesh and blood, but there really is life in the land of
Alzheimer's, there really is a there, there...even with the end-stage
folks.  I am not a "look on the bright side" kind of person.  If you
asked me, most days I would say the glass was half-empty.  I am calling
this one as I see it, not out of some Pollyanna-ish attempt to find
something good in the bad.
  

    
I think the Royal Canadians were Guy Lombardo's band.  Welk had the
Champagne Music Makers.  a-one and a-two.
  

    
<< 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?>>

Yes. I've thought this many times.  My aunt (Mom's sister who is ten
years older and sharp as a whip), just sent me an e-mail commenting on
her visit to my mom today.  This time, Mom didn't remember her sister's
name which she usually does, but as you suggest, the awareness of a
familial tie was very much present.

One thing that strikes me about this disease is how the earliest
development of human life is mirrored in its last decline.  When you
think of most humans between ages 25 and 65, the rate of change is
fairly constant.  However, my mom, in the last 18 months, is declining
at the rate similar to how a child from six months to two years of age
develops.  

From a utilitarian perspective (which assumes the usefulness of a
human life), great attention and joy is placed on the infant/toddler
speaking her first word or taking his first step. The future is theirs.
 On the other hand, the human decline toward death is rarely a cause
of notable attention.  Yet, considering we will all be there too soon,
and irrespective of any belief in a life beyond, there should be more
emphasis on how we honor the last passage toward death.

When my father was in his last hours, my brother called me to tell me
that if I wanted to see him, I needed to fly there immediately.  My son
and I arrived to find him shrivelled and looking more like a one
hundred year-old man than a 75-year-old.  Two weeks before, they had
stopped all medications.  Dad was fed up with his decline and
stubbornly refusing to eat or drink anything. Yet, drug-free, there
were brief moments that day when I knew he cherished the sense of
connection with my son and me.  Then he would fade into a sleep-like
stupor. What I remember most was a last wakeful moment when my son
showed my dad a large photo of my grandson (his great-grandson) who was
not quite one-year-old.  In a last moment of lucidity, it was evident
that my father knew this was a photo of a member of his family. 
Importantly, there was something dignified and at peace with the way he
exited. 
  

    
sorry, was being cryptic about the 'nite of the living dead' remark.
i definitely saw folks in my evil mother's various dementia situations
(assisted living; adult daycare; dementia ward; b+c home) who i felt
did get some pleasure/joy/value in their lives.

but the annoying happytalk/infantilization stuff really irked me.

interestingly, i just read a novel 'summer people, where one of the
characters is a 70+ woman in the early stages of demenia. and she also
remained as she always was (male-focussed). projecting like mad here,
i dont think this character, as depicted by her author, would have been
interested in babydolls or music --- unless a boy was attached somehow.

while we know alz tends to cause more character0-change than
other kinds of dementia, at the moment the medical profession
treats them the same way (not having a bunch of options)

an early novel by michael ignatieff, and 'moral hazards', one of
the best novels i have read in the last five yrs,  both dealt
with early-onset alz. not much celebration in either book ---
but heartbreak and emotional honesty

not to detract from your nonfictional efforts, lauren!
different kind of thing...
  

    
Paula...I can't tell you how delighted I am that I misremembered the
Lawrence Welk thing.  My grandparents also hated Guy Lombardo!
  

    
And Scott...I've thought a lot about the symmetry between beginning
and end of life -- in terms of rapid change, and in terms of how we
love and honor and have unlimited patience with babies (who need to be
fed, who poop all day long, who are ultra-high maintenance, who can't
understand a word you say and can't talk)and the frail or ailing
elderly (who have the same needs) and for whom we do not have the
patience, whom we do not honor.  
  

    
fyi, Paulina:  My mother was very male-identified and flirted
constantly with the one male staffer at her facility.  If you read
Dancing with Rose, you will see what her reaction was to a real live
baby, my then 4-month-old daughter.
  

    

> the one male staffer at her facility

Not many men, not even in site-management positions, in the field of
eldercare, are there? It seems to be a field dominated by females.

I suspect part of that is because women tend to be more able to be
nurturers and men more [traditionally] intent in FIXING problems. With
dementia residents, there's no fixing the core problem, it's all about
helping the resident be comfortable in whatever state s/he's stuck in.

The bigger part, however, is more likely the pay scale. It's very hard
work, hard physically, hard mentally, hard emotionally, yet the
Burger King's drive-up window worker -- whose job requires very 
little physically or mentally and certainly nothing emotionally -- 
earns more per hour.

Lauren, *why* do these women go into eldercare? What kind of person
chooses to work such a difficult job for so little money? I know
you touched on this in "Dancing with Rose" but I wondered if you might
expand on it a bit here.
  

    
JADP (which, to the uninitiated, is WELLspeak for Just a Data Point) -- I
heard Oliver Sachs on NPR today while driving, talking about his book on
music and the brain.  The capacity to respond to music, he was saying, is
close to "indestructible" and can survive Alzheimers, strokes, all kinds of
dementia and brain injury -- as Lauren illustrates and as Cynthia has seen
(and documented) first hand.

I'm interested in learning if there's anything more you can say about
Maplewood, Lauren.  You mention that it's part of a newly-built campus that
includes assisted living and cottages for those still able to live
independently.  Was it not-for-profit, or for-profit?  Part of a chain?
Oregon is supposed to be such a model for assisted living -- where Keren
Wilson invented it (sort of, because small board and care homes had been
around forever) -- that I wonder if local regulations or culture made it as
good a place as it apparently is.

(oh and that's Oliver Sacks, above, sorry)
  

    
Eldercare IS female-dominated, from the lowliest caregiver (like I
was) through facility administrators.  So is childcare.  Two
"pink-collar ghettos."  One way of looking at this, as Cynthia says, is
that women are socialized to be nuturing, problem-solving,
relationship-oriented human beings -- exactly the traits needed for
this kind of work.  Another way of looking at it, as Cynthia points
out, is that the pay sucks...and women get stuck doing the jobs that
make the least money and no future.

Cynthia aska:  *why* do these women go into eldercare? What kind of
person chooses to work such a difficult job for so little money? 

Many reasons...most of these women have no education beyond h.s. (or
GED) so employment opportunities are narrow.  The skills they have to
"sell" are the ones they developed as mothers (Most of these women were
teen mothers, btw.) Also, their home situations are quite volatile so
they are often looking for new jobs that they can get quickly.  That
said, I also want to say that for some of these women this work is a
true calling.  They want to be in a helping profession but do not have
a nursing degree (or even a CNA) and have no resources to go and get
one.  In this job, they can feel they are doing important, vital work
-- even if the rest of society doesn't view it that way. 
  

    
I'm interested in learning if there's anything more you can say about
Maplewood, Lauren.

Maplewood is a for-profit facility, part of a medium-size chain that
operates assisted living housing, memory care and senior independent
living in many states.  Oregon has a wonderful system, a network
really, of volunteer senior-care ombudsmen.  They are trained and go on
regular (unannounced) visits to eldercare facilities all over the
state.  They are advocates for the residents, kind of the eyes and ears
for families that can't be there, or do not visit often.  There are
significant state regulations concerning eldercare facilities -- but I
am sure that's true in all states.  

I don't know that Oregon is a leader.  I've actually never heard that
before -- but it may very well be.  I have a bit of experience with
memory care facilities in New York and senior rehab care in Florida. 
By comparison, Oregon is quite enlightened.

Does anyone know anything about eldercare in Canada?
  

    
i know a teeny bit about eldercare in canada ---
my cousin, who lives in bc, has a mother-in-law
in the bc eldercare system. as one would expect,
the govt pays for a LOT more than it does in the u.s,
and from what i have observed second-hand, the facilities
and options seem pretty decent (as you would expect
from -nice-, social-welfare canada). there
was still the need for competent adult to
oversee all (as my cousin's husband does)
and there was still a need/place to pay for
an extra private caregiver, from time to time,
and take up slack. but generally, the system
seemed far better than in the u.s.

quel surprise
  

    
There was an article in the paper the other day saying that not only
were many caregivers minorities but that some people are skipping the
middleman and actually moving to board and care facilities in Mexico.
  

    
Yikes, talk about transfer trauma.
Lauren, a writing question.  Were you putting some of these chapters
together as you wer living them, working at Maplewood?  Or did you sit down
afterwards with everything, your notes, your thoughts about your mother,
hindsight, etc., and begin then?
  

    


> in this job they feel they are doing important vital work,
> even though [it's not recognized by the public]


That "not recognized" part is exactly right!

I was talking recently about this with a guy, noting that the person 
who smooths concrete, the yard maintenence worker, the truck driver --
all these people earn lots more than the person caring for the frail
elderly. The guy said "but those other jobs take special skills."


Anybody who's spent any time in an eldercare facility knows there are
a lot of skills necessary to be able to effectively care for the
residents there. And anybody who's got a loved one in one of these
facilities knows that the family placing the loved one has been promised
that the caregivers are given all kinds of special training, plus
additional monthly group training sessions on various eldercare issues.

Was that your experience as a caregiver, Lauren? I mean, you wrote that
your initial training was minimal, but were there monthly meetings where
you got special extra training? 
  

    
>>... a writing question.  Were you putting some of these chapters
together as you were living them, working at Maplewood?  Or did you
sit down afterwards with everything, your notes, your thoughts about
your mother, hindsight, etc., and begin then?

Thanks for the question about writing.  I had a reporter's notebook in
my half-apron when I worked.  When I came home, I fooled myself into
writing by telling myself I was going to "type up my notes."  Sometimes
that's just what happened; many times I ended up with a rough draft of
the narrative of that day. Some of these rough drafts became parts of
the chapters.  I really wrote as I went along, to answer the question
directly...which was exhausting and nerve-wracking but the only way I
knew how to keep everything fresh. I did not want to be reconstructing
three or four or five months after the fact.  I wanted to be reliving
four hours after the fact. 
  

    
>>were there monthly meetings where you got special extra training?

Sort of.  At one monthly meeting (required, on your own time, btw...so
you can imagine the attitude we all had), a Physical Therapist came in
and talked about how to lift people so you wouldn't hurt your back. 
(We ignored the advice because it involved two caregivers, and since we
were each alone in our units and would have to walkie talkie to get
some help, we usually didn't.)  Another meeting the activities director
talked about how important activities were.  Which we all knew. What
she didn't say was how we could pay attention to activities (other than
bring some of our residents to planned ones) when practically all our
time was spent caring for people's immediate needs.
  

    
Which points up the fact that there just weren't enough of you.  After a
while, you write, you really got into the flow and could handle the
workload, but of course you should have had help with a two-person transfer.
 The injury rate for personal care aides, in all settings, is extremely
high.  Better wages and better benefits, and better training, would not only
help people do their jobs better, but reduce the turnover that keeps workers
in a constant state of near-crisis.

I like that type-up-your-notes approach, Lauren.  The book has that sense of
immediacy that comes from writing as you go -- yet I couldn't imagine how
you could be.  Teaching, parenting, working at Maplewood -- and writing?
Yow.
  

    
we live in the age of the anorexic corporation. no c-level officer
gets rewarded for -increasing- headcount, wages, benefits...
  

    

I think transferring your daily work experiences from your mind into a
written form so quickly really paid off, Lauren. Your book does a remarkable
job of letting us see what you saw, feel what you felt. You couldn't
have offered such a clear, honest look at what it's like in those facilities
if you'd waited to write it a month or three down the line.

That's interesting -- enraging, actually -- that you were required to
attend monthly meetings "off the clock." I'd think that would be illegal.
Did you look into that? Has there been any efforts on the part  of
caregivers to demand that they're paid for attending meetings? 
  

    
>>>Teaching, parenting, working at Maplewood -- and writing?
Yow.

For the record...I don't teach any writing seminars in summer and fall
-- which is when I worked at Maplewood.  Also, I have a
partner/husband/
co-parent who took up a lot of the slack when I was punching the
clock.

I DO want to take credit for working hard...but not ALL that credit.
  

    
>>>Has there been any efforts on the part of caregivers to demand that
they're paid for attending meetings? 

You know, Cynthia -- and whoever else is listening -- there was SO
much stuff going on in these women's lives, so much chaos, so much
uncertainty from day to day (would the car work, would the no-good
boyfriend rip them off while they were at work, would the childcare
provider be there for the kid after school, would the VA come through
with the benefits for their ailing husband) that there was no time or
energy to devote to such things.  They were happy to get the paycheck. 
Back in the day, a union would have come in to help.
  

    
Lauren,I'm wondering how many people in your
acquaintance-friends,colleauges,neighbors-are dealing with Alzheimers
in a relative and what your conversations with them are like.

Do people who know about your book see you as some sort of expert?Do
people recognize your name and tell you their stories?How many seem to
have come across the validation-not-correction approach?Is that
something you tell people about,and can they hear you?

In the interval before we have decent wages for caregivers,and more
decent care for people with Alzheimers,it seems like some anguish could
be alleviated,for patients and caregivers,if more people could
understand that orientation to reality is not a helpful approach.

To some extent I'm sure everyone has to go through some trial and
error(and denial) in giving up on reality orientation,but it might be
useful if as many articles about Alzheimers mentioned validation as
discuss plaques,dangles and pharmceuiticals.