Inkwell: Authors and Artists

    
We're very happy to welcome our next guest to the Inkwell.

Paula Span is a veteran journalist.  She spent 16 years as a
Washington Post reporter, has freelanced for dozens of publications,
and now teaches at the Columbia University J-School.  She contributes
frequently to the New Old Age blog on http://www.nytimes.com.  She's a
native New Yorker, a theater goer, a movie buff.  She keeps tabs on her
86-year-old father (see http://www.paulaspan.com ) and is a caregiver
in waiting.

Leading the discussion is Lisa Harris.

Lisa is a business owner, mom, and co-host of Inkwell.vue on The WELL.
 Lately, Lisa has also been a distant care-giver for her mother, and
an involved, yet non-primary care giver for her 95 year old
grandmother.  In her spare time, Lisa likes to bake bread and practice
Tae Kwon Do.

Welcome, Paula and Lisa!
  

    
Thank you, Dana!

And thank you, Paula, for joining us and for writing this very
important book. You call your book a "support group in print" which I
absolutely love.  You cover it in the Introduction, but for those
people who are joining in who haven't read your book (yet), can you
tell us what brought you to this subject?  
  

    
Greetings all.

I'd written a couple of looong cover stories for the Washington Post
Magazine in the past few years, one about assisted living and one on delayed
retirement, so some of the demographic shifts and caregiving issues were on
my mind.  I'd been reading a lot of economic research, a bunch of
gerontological studies.

But really, what spurred the idea of writing a book about adult children
caring for aging parents was this change you can't help noticing when you
hit your late 40's and 50's: Suddenly, the folks you run into at the
supermarket or the gym, the ones you used to talk to about your kids, are
all talking instead about their parents.  It's just in the air.  We used to
chat about getting our kids into Middlebury and now we're worrying about
getting our mothers into assisted living.  Instead of SATs, we're swapping
information about ADLs.

[ADLs: activities of daily living.  It's the way professionals assess how
much help someone needs.  Can she bathe herself? Dress herself? Feed
herself?]

Anyhow, I was becoming aware that my boomer peers and I were not very well
prepared for this mission.  And I thought that by following some families
through this transition as they had to figure out how best to help their
fathers and mothers, I could illuminate the landscape a bit.
  

    
For me, the format was great.  The personal stories made it real, but
the information you provide is and will continue to be valuable.  

Additionally, each chapter was about a different kind of care.  Could
you give us a brief description of the kinds of care (and caregivers)
that you encountered?
  

    
I wanted to cover the major options available to people "when the time
comes."
So there's a daughter trying to keep her mother in her little house in the
Bronx.  She hires home care aides. (Her challenge is to keep hiring them as
fast as her mother fires them.)
There's a daughter who moves her mother into her own household -- the
multigenerational family.

In Boston, two families consider assisted living.  One person moves in, one
doesn't.

Two families place relatives in a nonprofit nursing home outside Trenton,
N.J.

And in Baltimore, two families enroll in hospice care.

Around those sagas, I've tucked and woven a lot of useful information --
academic research, government statistics, interviews with experts -- and
there's a long resource list at the back.

But the family stories are the heart of the book.
  

    
They really are.  How did you find them?
  

    
 (Note: Offsite readers with questions or comments may have them added
  to this conversation by emailing them to inkwell@well.com -- please
  include "When the Time Comes" in the subject line.)
  

    
This is a timely discussion. I got an email this week that my mother is 
reaching the point where assisted living may be the best option. We now 
need to figure out how to provide for someone who has been living on 
social security in a foreign country (Israel, in this case) with very 
limited savings, into a place in the US because that is the language she 
knows, and it is very unsettling to think of putting her in a living 
siutation where she likely will not be able to communicate well with the 
caregivers. So, what options do we have? (Do we have options?)
  

    
How I found families:

Oh, the usual journalistic juggling act.  One or two came through friends of
friends.  The folks who were considering moving into a facility, I could
locate by calling 20 assisted living places in and around Boston and asking,
"Who've you got on the list that's considering moving in and might be
willing to hear from a reporter."  Ditto for the hospice patients, though
they were already in care.  The multigenerational family, the daughter
responded to a notice I was placing in small newspapers and weeklies in
upstate New York.

Of course, there were folks who said no (or said, "Are you out of your
mind?), because I wanted to be able to spend LOTS of time with people, over
many months, as they figured out what to do and then did it and then
reflected on how well or badly the transition had gone.  It's a very
stressful time, so some people were understandably reluctant to make that
commitment.  And some bailed when they learned that yes, I did want to use
their real names.  No fake names, no composites.  In fact, you can see the
families -- their photos, old and new, and some videos -- on the website,
paulaspan.com.

But in the end about a dozen families agreed to work with me.  Partly, I
think it is somewhat therapeutic, in the midst of this draining and
sometimes lonely experience with one's parents, to have someone sit and
listen, nonjudgmentally.  Reporters are good at that.

But also, I think they recognized that they'd learned a whole lot in a short
time, and they thought that by allowing me to tell their stories, they might
share their knowledge with others.  That's why it's a support group in
print.

Ari, you need to move your mother into AL somewhere around Boston?  Is she
English-speaking or Hebrew-speaking; I was a bit unclear.
  

    
Sorry, I misunderstood.  She's been living independently in Israel but she's
American and you want to move her back here where she can communicate with
caregivers -- but she can't really live completely independently.  Is that
right?
  

    
I've had a lot of difficulty just posting in your blog, Paula -- this
is so charged for me, having just gone through my father's cancer and
death.  And charged for the other relatives too... the thought of
having it out with our real names on makes me shudder.  Part of it is
the financial component which has always been not up for discussion in
the family.
  

    
I think I would have said yes, if I were a candidate.  Mostly because I
think this type of book is so useful, and I know I wouldn't be able to write
it myself.


All of the families seemed to be pretty high funcionting to begin with in
their relationships with each other.   I'd guess that the more dysfunctional
the family, the less likely they would want to share with the world.
  

    
Hi Paula,  I am in the middle of your book and think it is a wonderful
resource for families at this stage in their lives. 

In the several months before my mother died of cancer, my sister and I
hired a number of home health aides to help during the day and then
stay through the night. That section of the book Some of them, one in
particular, was lovely. The best was a young, very educated woman who
loved to read and was amazed at the number of books in my mother's
house. She had some experience with people on the edge of death and
told my sister and me some things to look out for and to be prepared
for. Other aides were less than great. One tried to talk Jesus to my
Jewish (not very religious) mother. Another was a recent immigrant from
Kenya. she was friendly but did not know how to make scrambled eggs.
Well she may have known how to make them but when my mom asked for
scrambled eggs, she didn't know what Mom meant.

Another aide was really afraid of death and absolutely did not want to
be there when Mom died. Of course mom died on her shift. 

But all of these aides helped my mom to be able to die at home, which
is what she wanted the most. 

Mom did not get very much use out of hospice, partly because she
entered too late and partly because the hospice that my mother's
oncologist  referred her to was not as good as I would have liked.
After having worked with HIV/AIDS clients for 15 years and having known
extraordinary hospice nurses, I was pretty annoyed with that.  
  

    
Ari: I think the first order of business, if you're moving your mother back
here, is to get an assessment: What are her health problems, how much help
does she need with what, is she fully lucid, etc. etc.  I wouldn't
necessarily assume that assisted living is what she needs.  She might be
able to function in a small apartment with some home care.  She might be
able to live in her own place and go to an adult day program.  Or, she might
be too frail or have too many health problems to stay in assisted lilving
for very long.

So who does good assessments, and can then help you figure out the next
step?  A local Jewish Family Services or other social service agency.  If
we're talking Boston, there's a full-service geriatrics at Mass General with
social workers that's a model of what elders should have access to
everywhere, but rarely do.  (Sorry, that should be a full-service geriatrics
service.)  And there are a lot of GCM's: geriatric care managers.  These are
social workers with additional training and credentials who can assess a
senior's condition and situation and help the family navigate the system and
find solutions.  Pricey, but worth it if you can swing it, and some social
service agencies do geriatric care management on a sliding scale.

There's a locator on the website of the National Association of Professional
Geriatric Care Managers.

Yes, you have options, more than families used to.  Which is A Good Thing,
overall, but it also makes these transitions more confusing.
  

    
Elaine, the blog (I assume you're referring to the New Old Age, on
nytimes.com, which I contribute to regularly) is meant to be useful --
please feel no obligation to post.  Maybe later, when the emotions and
losses have receded a bit.  Though you don't have to use your real name if
you do want to join the discussion.

Lisa, it's true these families were reasonably functional in that there were
no substance abusers, no cases in which siblings refused to speak to each
other (though several in which they certainly had resentments), no cases of
elder abuse by families (though one in which an outsider financially
exploited a man with dementia).
But it's also true that when it comes to caring for old people, even
educated and savvy people feel like they're groping in the dark, cobbling
together makeshift arrangements that last six months or a year and then
patching together something else when the situation changes, just fumbling
through the best they can.
It's an irrational system, the way we care for elders.  If you wade into
this area and find yourself thinking, This is just nuts -- well, you're
right.
  

    
Julie, I'm a big hospice advocate.  It pains me to hear that the hospice you
worked with wasn't top-notch.  But overall, I think it's an amazing and
underused service.

As you mentioned, calling hospice early enough will have real impact on what
the staff is able to do for your relative.  Even very skilled nurses and
social workers and aides can't do much when families bring them in within a
few days of death -- yet that routinely happens.  Average length of stay in
hospice in this country is 20 days, not long enough.  Three months or more
is optimal.  And for the elderly, Medicare pays.  So why don't families call
sooner?

Because they're waiting for a doctor to tell them it's time, and some
physicians refer to hospice and some don't.  Because they're unaware of what
hospice can provide, or mistakenly think of it as a place instead of a
service.  Or because they don't want to acknowledge that someone is dying.

Nothing makes this stuff easy.  But hospice can make it a little less hard.
  

    
Paula, I'm so glad you wrote this book.  I need this kind of
information badly right now.  I just watched the video of you and your
father on your website.  It was great to see you!  Your dad and my mom
are the same age and at about the same level of need, though probably
my mom needs more help than she gets.  How far away are you from your
dad?  And does he still drive?

I think it's great that you insisted on real names; can you talk about
why?  I would have participated too if I qualified, but I can imagine
the 'no pseudonyms' was a problem for many.
  

    
Paula, how much is it possible to help a parent who refuses help? I would
love to connect my mother with resources, but I can't get her to agree to an
evaluation because she doesn't want to have to admit she's anything but
hale, hearty, and practically immortal.
  

    
I just read in your book where one of the women had a urinary tract
infection and then afterwards became more angry and disoriented. I help
an elderly woman who lives in an assisted living facility and the
social worker there told me the same thing, that she often sees
disorientation and personality changes after a UTI. I never knew that
before. So many aspects of growing old are not well-documented or
generally known. 
  

    
About 3 years ago, my grandmother really seemed to lose her mind almost over
night.  Turned out to be a UTI.  But it took us (what I thought) a long time
to figure out.  My dad's siblings had gone so far as to look into an
Alzheimer's/Dementia wing at an AL facility before the doctor figured out
what was really wrong with her. Scary when you think about it.
  

    
Paula, were there any facilities that were less than forthcoming with you?
Or more to the point, did you encounter anyone or any facillity that you
just thought so poorly of you didn't include them in your book?  (No need to
name names, of course.)

How did you parse out the good from the not-so-good from the truly awful?
  

    
Paula, in our case my mother has been living with my sister in Israel. She 
has had several falls, and it has become clear that the current situation 
will not be tenable for long. As with everyone, there are a host of family 
issues around money and lack thereof (not to mention the usual family 
foo). It's going to be a difficult year, I think. My wife will be in 
Israel in a couple of weeks and will get her own impressions. In the 
meantime, I'm just trying to figure out options. The one option that won't 
work is having her live with us unless we move to a less suburban area 
where there are friends and places to go in walking distance (however 
slowly she walks).

All of the grandkids are in Israel, so we haven't wanted to move her. On 
the other hand, her surviving sister is here in Boston, so this isn't a 
bad choice if language matters, as I think it increasingly will. 
  

    
Yes, Paula, the newoldage blog.  I have taken advantage of the ability
to elide my real name when I post ...

One thing that has dismayed me reading there is the emotion about what
others are/aren't doing with their elder relatives.  Did you run into
that much working on the book - this anger that anyone not sucking
their aging parents into the nuclear family was contributing to the
decline of Western civilization?
  

    
Carol, my dad is hanging in there nicely at 86.  He uses a walker, because
all though his stamina is pretty high, his balance sucks after a bout of
Bell's Palsy a couple of years ago.  But so far, so good.

However, whenever the phone rings before 8 in the morning, my heart races a
bit.  I'm thinking, "Is this the call?"  You know, THE call.
I spoke at a JCC in Tenafly NJ last night, and one of the geriatrics
specialist there pointed out that we have 10 months in which to prepare to
become parents (and of course, lots of people prepare before pregnancy).
But we can become a caregiver with a single phone call.

I wanted to use real names because a) that's my journalistic training and
background and b) I wanted readers to know that these were not composites,
that I wasn't concealing identities, that this was reality and real people.
Also c) I knew I would want to feature some of these families, their stories
and photos and videos, on a website and that would require identifying them.
And while we're at it, d) Why wouldn't I identify them?  Reporters conceal
identities if a subject has done something illegal, or is in some danger of
retribution or backlash for talking to the press, situations like that.  So
I'd agree not to ID someone who faced deportation for being undocumented, or
a whistleblower in danger of losing a job.  Some years ago, I agreed not to
ID certain people with AIDS in a time when houses were getting firebombed or
kids kicked out of school (I wouldn't do that now).

But someone taking care of a parent isn't doing anything shameful or
unlawful, so why give readers the credibility of knowing that this is a real
 -- sorry, let's start again --

why NOT give readers the credibility of knowing that this is a real person?
That this is her name, her town, her photo?  Always my preference.
  

    
Julie, yes, uti's are one of those ailments that can be pretty minor in a
younger person, but quite dangerous (and with very different symptoms) in an
older one.  Dosages of medications are another example.  We need
geriatricians, and we don't have enough and aren't training enough, probably
because fledgling doctors decide they'll never make much money treating
patients who are all on Medicare, and thus paying lower rates for care.

Lisa, in trying to find families who were considering facilities, I went to
the facilities first, asked, "Who've you got that's considering a move in
over the next couple of months?"  Anyone who didn't want a reporter around
probably just never responded effectively.  So yes, there probably is a skew
towards better facilities rather than substandard ones.

Elaine, I too would think that the difficult job of caregiving would at the
least make people tolerant and nonjudgmental about what *other* caregivers
choose to do.  And in general, I think that's true.  The commenters on the
New Old Age (http://newoldage.blogs.nytimes.com) are a pretty supportive
group.
(It helps that the NYT moderates, so not many of those folks with 12
exclamation points after every sentence.)
But now and then, you do hear some of that sniping.  That it's somehow a
shameful thing to use a nursing home (I disagree).  That we used to take
care of our parents and now we're too selfish and careerist and feminist and
whatever. (Demonstrably untrue).  That in an immigrant's home country,
everything is so much better. (Often, a system that relies on the unpaid
labor of women. And also relies on shorter lifespans.)

What can you say?  I think most people understand that families are cobbling
together arrangements the best they can, changing them when they must,
stepping up to a tough job without a lot of support.
  

    
Paula, has doing this book changed how you look at your own aging
process?