inkwell.vue.357 : Paula Span, When The Time Comes
permalink #26 of 106: Paula Span (pspan) Thu 9 Jul 09 09:43
    
Gotta go meet students, back to ari and fawn in a bit.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #27 of 106: Elaine Sweeney (sweeney) Thu 9 Jul 09 10:07
    
> hear some of that sniping ...
I noticed that very few of those snipers returned after their original
post to reply to any of the real-life situation responses on the NYT
blog.  

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>&g
t;
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.
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>&g
t;
Oh, God, so true.  After my father passed away, I came to feel that
much of his complaints about where he was and who was treating him or
caring for him, (or not), were most likely complaints of a grosser
level.  He didn't like dying.  He didn't like his loss of independence.
 He didn't like the discomfort.  

And there was little, beyond trying to make sure that medical remedies
were being applied, to do about that last part.  But parsing things in
that way was impossible for us at the time.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #28 of 106: For Rosetti, wombats held a peculiar fascination (loris) Thu 9 Jul 09 13:46
    
paula, did you have a hard time selling the book proposal?
i was told that
a) books on eldercare dont sell, probably becuase
b) no one wants to think about this until they have to.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #29 of 106: Paula Span (pspan) Thu 9 Jul 09 20:54
    
I did get a fair number of turndowns on the book proposal, loris.  A lot of
"we love your writing but we can't sell the subject, it's too depressing."
The eventual publisher Springboard, an imprint of Grand Central (which is
owned by Hachette), aims squarely at baby boomers.  We are both hoping that
when people actually need to know what to do about parents, they will want a
book that helps steer them towards some understanding and solutions.

We could be utterly wrong, of course.  But we're not the only folks taking
this gamble.  Jane Gross, founder of the New Old Age blog, is working on a
book.  So are other journalists.  And then in 2010, Gail Sheehy comes out
with a book on caregiving and that will be like the QEII steaming into the
harbor and swamping all us little dingies.

I note, too, that Pete Rabins' book "The 36-Hour Day," kind of the bible on
Alzheimer's and not exactly a beach read, has sold about a zillion copies.
I think as usual, boomers will not pay much attention to a subject until
hey, it's happening to US.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #30 of 106: Paula Span (pspan) Thu 9 Jul 09 21:04
    
My own thoughts about my aging, hmmm.

I've always wanted to avoid the medical merry-go-round in which frail old
people are subjected to endless tests and treatments and meds, trips to the
hospital and then to rehab and then home and then around again, all in a
futile attempt at something nobody gets: immortality.  So I didn't need to
write a book to know that I would be ready to just say STOP, and earlier
rather than later.

I already had advance directives in place years ago (unlike most Americans
-- I assume alla youse know this is something you need to tend to, whatever
your ages).  But I've made them more specific lately.  If I am terminally
ill, no ventilator, no antibiotics, no surgery, just STOP.  And frankly, I
don't think one should even need to have a terminal diagnosis in order to
choose to end one's life, but that's a subject that's beyond the scope of my
book.

I have bought a long-term care insurance policy.  Cost me $1700 a year
through my credit union, and as a divorced person with one child, seemed
like a gift to her as well as an asset to me.

And like lots of us here, I'm mulling in a general way about some kind of
private alternative to the current options for older people.  I've done no
research on this, but it does seem possible that small-scale congregate
living -- like a board-and-care home that's retrofitted for four or five
older people, with a live-in caregiver, except I get to choose the other
three or four -- might be possible.  Friends and I used to joke about buying
a small apartment building and launching The Home for Wizened Journalists
(Scrabble games and cocktail hours) and maybe it's not such a joke.

Fawn's question is maybe the toughest thing -- parents who staunchly insist
they require no help or planning and never will, any evidence to the
contrary notwithstanding.  Let me come back to that.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #31 of 106: For Rosetti, wombats held a peculiar fascination (loris) Thu 9 Jul 09 21:38
    
something that was told to me is that since aging takes everyone (and every
family) so differently and there are so many variants on it --- that how
could one write a book on it? and not to mention, a 50-yr-old is different
from a 90-yr-old...

i am sure you saw that -great- nytimes article about the ageing=in-place
nuns....
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #32 of 106: Paula Span (pspan) Fri 10 Jul 09 05:48
    
I did -- that's Jane Gross, who I think is using part of her book research
for this series.

Not sure I buy that logic about aging, though.  Everyone does *everything*
differently, so how can one write a book about
adolescence/careers/parenting/investing/retirement/etc?  Yet people do.
But the differences are one reason I wanted to address the subject through
families who were opting for a number of approaches, rather than trying to
do a manual with checklists.

I assume publishers get as freaked out about aging and decline as everyone
else.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #33 of 106: Lisa Harris (lrph) Fri 10 Jul 09 07:38
    
Have you maintained contact with any of the people you interviewed?
Specifically the families or caregivers?
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #34 of 106: Amy Keyishian (superamyk) Fri 10 Jul 09 10:11
    
What do you think accounts for some families' being able to pull
together, and others' being torn apart? 

Can you share the name of the place in Montclair where Marla's mother
lives? I'm sure it's at the end of the book, but Kindle doesn't let you
flip the pages so easily. 
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #35 of 106: Paula Span (pspan) Fri 10 Jul 09 11:26
    
Amy, it was Arden Court, which is actually a chain of dementia-care assisted
livings, but one that was planned with the input of a lot of leading
researchers at the time.  It incorporates what were then state-of-the-art
ideas about residents having smaller "neighborhoods" so that they could have
meals in their own dining rooms, have their own lounges, a smaller scale.
Plus color schemes so people can find their neighborhood.  And unlocked
doors to a big outdoor area so people can wander, but safely.  And staff
trained in that approved method of communicating with Alzheimer's patients,
so you are not always correcting them but joining them in their world.  Etc.
The Arden Courts were sold since that stage, and the people who helped plan
them aren't so clear about how the new owners are ooperating them.  Plus,
ideas about dementia care keep evolving.
But Marla found that it worked quite well for her mother, for a while.
(Keep reading).
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #36 of 106: Amy Keyishian (superamyk) Fri 10 Jul 09 12:43
    
zoinks
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #37 of 106: smuggling raisins into the Last Supper (carolw) Fri 10 Jul 09 13:21
    
The issue of parents rejecting help is one of the things I'm dealing
with.  My mother has five children, yet lives near none of them,
preferring her childhood state of North Carolina to Ohio, Colorado or
California.  (This even though she has picked up and moved around the
country all her life.)  So she lives near her sister and is more
involved in my cousins' lives than her own children's.

After 3 knee replacements, heart and back problems and only one good
ear and eye left, she is frail but lives independently in a retirement
community.  Maybe if my aunt dies before she does she'll consent to
move out here.  Meanwhile, she still drives (which is why I asked if
your dad still drives).  I'm afraid of getting the call that she's hit
someone.  Yet I cannot get my brothers and sisters to join me in urging
her to move near one of us.  They think it's a 'quality of life' issue
-- i.e., she's happy there.

I'm offering to be her caretaker even though I have no idea where
she'll live -- she won't move into our house, and the places I've
checked out are either prohibitively expensive or say that Mom makes
too much money to qualify.  Since my siblings are thwarting my efforts
anyway, I'm in limbo.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #38 of 106: Paula Span (pspan) Fri 10 Jul 09 16:13
    
Okay, plunging ahead.

I still do have contact with a number of these families, Lisa.  Several have
come to my book events.  One daughter did an NPR show with me in New York
and another spoke on a panel with me at Mass General in Boston.  It's kind
of a bonding experience, spending months with a reporter.  More than one
person said it was like having a shrink.  (In which case, I had to say, I'm
so glad you find it helpful to talk to me.  I'm happy to listen.  But of
course, I'm not a shrink because aside from listening, I don't really know
how to help you.  I could help you find a real shrink...)

But then, this is not unusual, to maintain contact with people you've
written about.  I am still in touch with folks I wrote about for Washington
Post Magazine stories years and years ago.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #39 of 106: Paula Span (pspan) Fri 10 Jul 09 16:19
    
Why some families can pull together and others beat each other up, hmmm.  I
suppose it's a function of how well the families have worked together on
other issues, how close they are geographically and emotionally, whether the
parents subtly encourage competition or cooperation.  I couldn't see any
obvious differences that an outsider could pick up on.

It can go either way, trying to coordinate eldercare with siblings.  I heard
people who were shouldering it alone wish they had a big family with lots of
brothers and sisters to share the load, and I heard people who were warring
with siblings wish they could just handle it themselves without anyone to
second-guess or bicker.

We do know that one child usually handles the bulk of the responsibility,
that it's usually -- two-thirds of the time -- a daughter or daughter-in-
law.  I did have two stalwart sons among my family caregivers, but realized
only belatedly that they were in families that *had* no daughters.  I often
wonder if the dynamic would have been different if Paul or Joel had had a
sister.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #40 of 106: Paula Span (pspan) Sat 11 Jul 09 12:18
    
Okay, let's tackle the big one.

Really, there are two questions facing those of us whose parents are
recalcitrant about accepting help, making changes, doing what seems to us
the smart thing.

One concerns methods: How can I get my parent to move/hire help/take better
care of himself/whatever change it is I'm advocating?  It's the How Do I
question.

But then, there's the other question: Should I?  Even if I can nudzh, argue,
persuade or browbeat my parent, or any elderly relative or friend, to make
this change -- is that my proper role?

Neither is a simple matter.

On the how-to front, keeping in mind that these decisions are rarely reached
in a single conversation but may take an extended negotiation, some
strategies:

Sometimes a suggestion carries more weight if it comes from someone who's
not the child.  A trusted physician.  The family lawyer.  The uncle they
always listened to about investments.
A social worker if one is involved.
A geriatric care manager, if you can bring one into the discussion.  I have
found these folks really valuable, especially for long-distance kids like
you, Carol.  GCMs are social workers (usually, though some are nurses) who
have additional credentials and who help families navigate these issues.
They work for you (unlike a case manager who may work for a social service
agency) and you can purchase the services you need.

Need an assessment, to figure out how much help your mother needs?  Don't
need an assessment, have already figured out that she's a good candidate for
ALiving, but you don't know which are the best local facilities or which
programs might underwrite part of the cost?  Trying to figure out how to
bring services into the home?  Need a mediator to talk to parents and your
siblings to broker compromises and ease conflicts?  A good GCM, one who's
practiced in your location for a number of years, can do all that and more.
Expensive at $125 to $150 an hour, less in cheaper places and more in NYC or
SF, but not as expensive as flying to North Carolina or Boca Raton all the
time.  Some social service agencies have GCM practices that operate on a
sliding scale and cost less.

You can find them through National Association of Professional Geriatric
Care Managers on the web.

Other forms of persuasion: Asking questions long before conditions
deteriorate, while it's still a hypothetical issue.  Mom, what would you
want us to do if... Dad, where would you want to live if...

Understanding that people may have very distorted ideas about what adult day
services or AL or nursing homes are like, and that it doesn't cost anything
to just go look at a few.

Casting these discussions as their doing a favor for you, which is actually
true.  That you want, for your own peace of mind, to know what their wishes
are and to have them written down in a health care proxy.  Or you want, for
mutual peace of mind, to know that you have a durable power of attorney, so
you can take actions on their behalf if they're incapacitated.  Or that
their unwillingness to [pick one] use a walker/stop driving at night/have a
GCM look in on them once a month/allow a home aide to come twice a week is
costing you sleep and making the change would be a great relief to you.

Sometimes none of this helps, not even if all the children present a united
front.  And we just have to wait for the aging process itself to force a
change, because sooner or later it will.

But the even stickier question, to my mind, is what the child has the right
to demand of the parent.
Which we can pick up later.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #41 of 106: Lisa Harris (lrph) Sat 11 Jul 09 14:28
    
Paula, how long did it take you to do the research for this book?  And,
along the same lines, now that you are sort of an expert on the subject,
would you consider focusing on this subject for future projects?
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #42 of 106: smuggling raisins into the Last Supper (carolw) Sun 12 Jul 09 21:29
    
I'm going to look into the GCM situation.  Meanwhile, yes:  What do we
as adult children have a right to do?  On one side you could be
depriving your parent of their independence, which is hard for anyone. 
On the other, you could have a hands-off policy that some would
consider neglect, plus the worry that something awful will happen.  The
compromises don't always seem to be enough.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #43 of 106: . (wickett) Mon 13 Jul 09 14:03
    

So hard.  I wouldn't have known how to do it, except that my mother and I
were exceedingly close, loving, and talked through everything.  Sometimes 
the relationship was she mother-me daughter; sometime me mother-she 
daughter, sometimes like sisters, sometimes best friends, sometimes 
spouses.  However the relationship reshaped itself, it was good.  We 
talked. About everything.  

If we hadn't talked, though, I think I would have erred on the side of 
imposing good care rather than standing aside.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #44 of 106: Paula Span (pspan) Mon 13 Jul 09 15:21
    
To answer the earlier question, it took me about 2.5 years from signing the
publishing contract to finishing and turning in the manuscript.  And then
another year for the book to come out.

I am still writing about this subject, on nytimes.com and elsewhere.  I'm
not done with it yet, and it's not done with me.  But I should be readying
another book proposal, and I don't really have a suitable idea yet.  I'm
hoping one descends on me.

So, adult children versus aging parents, an apprently widespread battle.

At any age, people want autonomy.  They want to make their own decisions.
They rarely want to move, even if that seems to family members a sensible
and more comfortable decision.  And in the Depression Era generation, they
rarely want to spend money, ev en if they HAVE money.

Further, <wickett>'s ability to talk to her mother, a lot, about how to
proceed and what to do sounds unusual in itself.  I constantly hear that not
only will elders agree to a change, they don't even want to talk about a
change.  "The only way I'm leaving here is feet first."  As if it were that
simple.

I think you can make a case that quality of life and safety don't always run
parallel.  If carol's mother likees where she lives, she has family
connections and a social network so she's not isolated, and for now she is
able to function there -- it might be sensible to move in advance of a
crisis, but yanking an older person out of their milieu and away from
friendships, even to be with/near a family member, can have serious costs.

One writer on geriatrics, Rosalie Kane, has talked about how we
overemphasize the need for safety.  Perhaps it isn't always the paramount
concern for someone who's lived a long and full life.  Maybe it's better to
spend another year or three in a familiar and comfortable place, with people
one knows and likes, than to move to a supposedly safer assisted living or
a child's home where there will be a lot of time spent Home Alone.
Immortality is not on the menu.
So perhaps the older person's wishes should take precedence, even if they
seem to be making what we think are poor choicees.

Further, let's acknowledge that our ability to induce/nudzh/persuade our
parents to do what we think best is limited.  The analogy with children is
fundamentally flawed.  Unless they have serious dementia and can no longer
make decisions at all, they have the right to make bad decisions.  They are
not kids, and We Are Not the Boss of Them.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #45 of 106: Paula Span (pspan) Mon 13 Jul 09 15:31
    
But.

It's also true that this is not a binary choice: Do What I Think Wise and
Live, Do What You Think Best and Die.  That would be simpler.

In actuality, what usually happens if elders are genuinely in denial about
their abilities, compromising their health, living in unsafe situations, not
heeding what doctors or professionals say either, isn't death.  It's
intensifying disability.  If they won't use a walker and their balance is
bad and they fall, they may not die from a fall.  But they may well break a
hip and never walk unaided again.

So if children are their caregivers, and their parents' intransigence about
whatever doesn't only imperil themselves, but can have a majorly disruptive
effect on their children's and grandchildren's lives too, then I think the
children have a right to say, What if they don't carry you out feet first?
What if you are in and out of hospitals and rehab for months or years and my
siblings and I have to devote thousands of hours and tens of thousands of
dollars to your care?  We have rights and needs too.

In other words, nobody is the boss here, not if this is an interdependent
system in which the children are expected to serve as caregivers (and want
and expect to themselves).  Then, a parent's behavior or choices become a
point of negotiation.

It doesn't get settled with the first conversation or the twelfth, but there
needs to be ongoing discussion, maybe with a mediator like a GCM or social
worker.  Because it is families, not government, not anyone else, who
shoulder the great bulk of care for the elderly in this wacky system.  And
families need to be able to work through these very complicated questions --
which will shift, anyway, whatever we decide -- without anyone issuing
commands that nobody can question.

I realize this is far simpler said than done, so would welcome others
chiming in with what helped to move these stand-=offs along.

Eventually, for the 2/3 of old people who will need long term care, poor
health will intervene.  Someone will not be able to function, and something
will have to give.  But none of us want to be taking actions in that kind of
crisis -- though too often that is exactly how it happens -- so raising the
options available and looking at them and debating them, early and often,
seems the better way.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #46 of 106: For Rosetti, wombats held a peculiar fascination (loris) Mon 13 Jul 09 19:50
    


i often thought, during my 10+ years of eldercare, that some of the problem
was generational. i.e. my mother, born in 1917, was of an era that didnt see
a lot of longterm frail elderly around and yet, had benefitted from
incredible improvements in public health and medical technology.

so her lived and felt experience --- and many of her peers --- seemed to be
that
a) modern medicine can fix everything
b) not in her developmental experience that she would linger on in slow
decline for years. her elders didnt; she didnt grow up seeing this; so....

we boomers have a different experience, obviously, so may not be as inclined
to a kind of denial. we dont necessarily think modern medicine can fix
everything (we see nature batting last, for example, in all the resistant
superbugs cropping up) and we have before us what my internist, wise man
that he is, termed years ago a hidden epidemic of frail elderly; and perhaps
an enhanced sense of what good quality of life is vs. wretched quantity of
life.

when i was going through the acute six years of eldercare fu, and would talk
with my age-cohort friends, these issues were so clearly NOT something they
wanted to think about and were dismayed to hear how taxing and how expensive
the whole process was. if they hadnt already gone through it, they couldnt
believe it...
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #47 of 106: Paula Span (pspan) Mon 13 Jul 09 22:17
    
Also, I think our generation is accustomed to paying for services, from
child care to housecleaning to dogwalking.  Our parents often express a
strange horror at having someone in their houses.  We have people in our
houses all the time.  We may not be as resistant, when our time comes, to
hiring people to help us.

And I hope we're more willing to think about aging and options than our
elders are, but who knows?  People do somehow seem wired to think we're
always gonna be okay, we're never gonna need help, and we're fine dammit so
go away with your assisted living brochures.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #48 of 106: For Rosetti, wombats held a peculiar fascination (loris) Tue 14 Jul 09 09:49
    
i think it's like folks who play the lottery. i've never met anyone who has
said 'yes i want a long slow decline, tracked by increasing incapicitation,
and possible dementia and incontinence'. folks seem to feel they will
-win- that lottery, dying peacefully in their sleep after running triathlons
into their 80s.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #49 of 106: Every Acid Dealer Gets Busted Eventually (rik) Tue 14 Jul 09 11:14
    
That's how I'm betting.
  
inkwell.vue.357 : Paula Span, When The Time Comes
permalink #50 of 106: For Rosetti, wombats held a peculiar fascination (loris) Tue 14 Jul 09 11:52
    
and do you buy a lottery ticket every week as well?
  

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