Inkwell: Authors and Artists

    
Nah.  Sucker play.

I've heard that we all have to die but so far, I'm on a roll.


All funning aside.  My wife and I are paying attention to this topic, and
we'll be picking up a copy of Paula's book.   Norma's mother died in her mid
80s, with Alzheimers, and this is serious stuff to us.
  

    
This is another of those areas in which technology and science outran social
policy and political response.

We can reduce the death rate from heart attacks and strokes, yes!  Of course
we should do that.
That we were relying on programs launched in the 30's (Social Security) and
the 60's (Medicare) to take care of all these people who now lived years and
years longer than they did then -- well, that didn't really come up.
That dementia is age related, and that the growth in the very elderly (over
85) population would mean a big increase in elderly people who were also
cognitively-impaired -- nearly half of those who live past 85 develop
dementia -- well, that REALLY didn't come up.

And here we are.
  

    
yup.
  

    
I was going to bring up that point, Paula.  I come from a family with an
increible history of longevity.  My grandmother is 95.  My other grandmother
died this year at the age of 93.  In her family that was young - her mother
lived to be 97 and her mother's grandfather lived to be 106.  At some point,
though, everyone dies.

Technology in medicine has made our lives longer in years, but not
necessarily any better for those extra years.  And of course, no one is
going to advocate that we encourage people to die when they no longer can
have *quality of life* whatever that is.

No question here, but I thought a lot about the effects of advancing medical
technologies without consideration of the social ramifications.
  

    
and, we tend to have smaller families, more geographically dispersed,
and often there is not the left-behind spinster daughter to take care
of the elders.

in terms of social policy, it was INSANE that medicare would pay for a
bypass for my 83-year-old mother, who was already demented and who
was already considered too medically frail to have the more minor
(and potentuially useful for mental functioning) surgery where the
carotid arteries are reamed out --- but no support for all the longterm
care AND decreasing quality of life for her. and of course NOW there is
good evidence that bypass, particularly on frail elders, accelerates
dementia...
  

    
One correction: depending on what period you are using for comparison, we
are not necessarily more geographically dispersed.

The big years of interstate mobility were the post-War years, the 50's and
60's, and hasn't increased much since then.  Sixty percent of the frail
elderly have an adult child living within 10 miles.
Though if you're the one with the parent in Tuscaloosa when you're in
Dayton, that may be of little comfort.
  

    
paula, wrt the 60 percent of frail elderly have adult child within 10 miles
--- did your research show if either the parent or the child -moved- to make
that nearbyness happen?  that certainly happens, as we know...
  

    

Social networks are incredibly important, as you make clear, Paula.  My
mother came to live with me the day my father died and stayed for over a
year.  She had already applied for an independent apartment in a community
with assisted living and nursing home care, as well.  We talked endlessly
about what to do, whether she wanted to stay with me or move to a similar
facility close to me, or move back to her home town.  All Mama's friends
were in her home town (well, except a couple frail old college friends in 
Berkeley, who weren't able, at that stage of their lives, to be active 
friends) and her ultimate decision was to go back. 

It was the right decision for her and, ultimately, for me, too.  She had her
friends, her church, lots of things to do.  She knew the territory.  We 
refinished, reupholstered, embroidered pillows, made curtains, created a 
beautiful apartment.  I visited often and Zephyr and Tashi both stayed 
with her when I went on business trips.  She also probably enjoyed  two 
visitors a day and played (and won) Scrabble games until she was 98.

Had she stayed with me, disaster would have struck her, too, first 
the firestorm and then when I became bed-ridden with multiple sclerosis.  
Had she moved to be close to me, she would, first of all, have lost 
everything, including perhaps her life, and then would have been bereft 
when I was too ill to come visit.  She would have made friends, of course; 
she always made friends, but she would have lonely and maybe sort of 
stranded.

Instead, after she moved, we talked on the phone daily for half an hour at 
7:30.  Before the firestorm, she would spend six weeks with me and six 
weeks in her own apartment.  After firestorm, MS, and when I was able to 
ambulate again, friends drove me to visit her, or friends brought her to 
stay with me and my home helpers took care of both of us.  When I was 
able to drive again, then I would spend one or two days a week with her.

Some of our best times during the last five years of her life--me with MS, 
Mama frail, sharp, and in the nursing home--were taking naps together.  
We'd snuggle on her bed, pull up an afghan I'd made, she'd take out her 
hearing aid, I'd put my head on her pillow next to her good ear, we'd 
talk, we'd sleep, we were just so happy to be together.
  

    

<loris> and Paula slipt while I was writing.
  

    
Elisabeth, that's such a lovely portrait of you and your mother together.

We know that social networks are hugely important, for all of us but
particularly for old people.  A church, a sewing circle or gardening club or
bowling league, friends who visit or do things together -- these are not
trivial.  Studies show that friendships actually help people to maintain
mental and physical health.  It can be hard to recreate them in a new
setting, especially if people's mobility is restricted or they have trouble
hearing or seeing or if they don't drive.  Not impossible -- friendships
form in assisted living facilities and in adult day programs -- but hard.

It's one of the factors to weigh when we're thinking about whether to urge
someone to move near us, or move at all -- what do they gain versus what do
they give up.  Giving up friends and connections, a history in a place,
that's a lot to ask even if the new location is great, or closer to us.

I could wish my father weren't a two and a half hour drive from me, and at
some point it may be necessary to relocate him.  But the folks he sits and
kibbitzes with each day waiting for the mail to arrive in his building, the
synagogue he attends every week, the people he plays cards with -- even a
gregarious guy like my dad would have trouble reproducing that in a new
location.  The longer he's able to "age in place," as they say, the better
for him.

Loris -- I'd have to unearth that study, which I think was from the Urban
Institute, about whether the 60 percent figure includes people who moved to
be near children.  Point is, geographic dispersion has not been increasing
for a long time.
  

    
I find all this interesting, and you make excellent points, Paula. 
I'm starting to rethink things a little.  Still, I worry that wanting
to be okay about backing off on caretaking is an easy out, a way to
justify benign neglect, a way to ease guilt. The tendency for parent
AND child is to turn away and not look at the harsh reality.  

Yes, things will continue to be in flux.  I hesitate to say "evolve,"
because let's face it, what I really mean is "devolve."  Emotions run
high in this arena; I don't want my mom to die, and yet it is
inevitable (and not in the distant future).  Modern medicine keeps
finding ways to keep old people alive.  Is there a point to this?  Some
want to live as long as possible, but others are tired and ready to
die.  I'd be in the latter group, myself.  It raises existential
questions.

I also want to say that there can't be any doubt that modern travel
has made it possible for families to be far-flung, and they often are. 
This really becomes a big issue when you reach a certain age and
realize that the distance between you creates caregiving problems that
mostly weren't there when people had limited means of movement.  In
other words, there's real value in having your family live near you. 
  

    
If travel weren't so expensive, that technology would solve the far-flung
caregiver's problem.  But I can't afford to fly to NJ every time mom or
grandma needs to go to the doctor/hospital.  I can't stand that when my mom
is in the hospital there is NO ONE to visit her from our family.  Grandma
can't do it, and my sister and cousins don't go.  Of course, part of the
problem is Mom herself - she has isolated herself with her socially
undesirable habits (habitually over 40 minutes late for everything, for
example).
  

    
I see caregiving as a continuum, though, with many points between turning
away/benign neglect and the other extreme, moving a parent into your
household or right nearby and being on call 24/7.

Plus, there's a tricky balance between acting before there's a crisis and
acting when there's not yet much need.

Are there other ways to be involved with someone's care besides being there?
 Are there relatives on the scene to whom you can be helpful and supportive,
perhaps financially, perhaps in arranging to be there for a week so they get
a vacation, perhaps in taking on some of the telephoning or bill-paying?
Perhaps in arranging for a GCM or a friendly visitor program or a
subscription to some local activity?

I worry about my dad, who's nearly a three-hour drive from me and whom I see
maybe once a month and talk to twice a week.  But I don't feel guilty, yet,
because hell, I know this is the easy part.  And the harder part will come
-- I'd prefer not to feel bad that it's taking its time.
  

    
Excellent point.

You wrote about the communities which are beginning to crop up where our
elders really can age in place.  Would you tell us briefly about those
places and the future of elder-care?
  

    
Starting to see some experiments in different ways of doing things.

Though what may have the greater effect is debate about health care reform
in DC.  Whatever emerges from Congress is not going to be the overhaul of
the long-term care system that probably should happen; that's too ambitious
and expensive, given that this is going to be a big battle even without that
part.  But something that Ted Kennedy introduced called the CLASS Act (!),
which I'll be blogging about soon on nytimes.com, could have real impact: it
sets up a national insurance trust for long-term care so that people who
*don't* qualify for Medicaid -- and most people don't until after they're in
nursing homes -- can use benefits for home care and adult day programs.
Like a long-term care insurance policy, except through the govt instead of a
private insurer.  This could be major.

But there are smaller scale private things going on, too.
  

    
Then there are "intentional communities" cropping up here and there --
Beacon Hill Village in Boston is the prototype -- in which neighborhoods or
even apartment buildings band together, charge a membership fee, hire a
director, and contract for all kinds of services from home care to chore
doers to transportation. Idea being, again, to keep people in their homes.
A sweet idea, but not yet clear if it's economically feasible.  Also not
clear to me if this is something that takes so much organizational ability
and social capital and money that it can flourish in Beacon Hill, Palo Alto
or Capitol HIll in DC, but not in Anytown USA.

And there are NORCs: Naturally Occuring Retirement Communities, which were
never designed particularly for seniors, but now a lot of older people live
there.  My dad's little apt building in southern New Jersey is close to a
NORC, where a lot of elderly Jews happen to live and know each other and
help each other out.  The idea is to bring services to the NORCs -- nurses
to do regular checks of vital signs and other health monitoring,
transportation, recreation.  Why should everyone in this building have to
struggle to get to some doctor when health care providers can come to them?
This idea is 20 years old and has some federal funding behind it.  I don't
quite know why it hasn't spread further than it has, but I'll know more
after I meet with some NORC folks in NYC tomorrow.

Problem you can see with any of these ideas is that at some point the rubber
meets the road: an old person becomes very sick and frail, and just needs
much more care than either a NORC or an intentional community is designed to
provide.  And home care, even with some sort of volume discount through a
community, will still be expensive.  How will people pay for it?

Some people just won't be able to age in place for good; I think we have to
make our peace with that.  Interested to hear what you think; maybe I'm too
pessimistic.
  

    
paula, your comments about beacon hill are exactly what i have thot ---
assumes a lot of privelege, social capital, knowhow, etc etc. and many folks
are not -pretty- in their characters as they age. i.e. you might get kicked
out of a beacon hill.

i know there is a model (you probably know what it;s called) that's replaces
nursing homes with board and care --- but with a higher level of medical
care offered. i certainly felt, after the fact, that i wished i had
understood better about the good and personal care that can exist in a good
b+c --- better than the fancier long-term facility my mother had been in.

i also wonder if some of the fancy 'active senior living' communities
are going to get converted to something else, given gfm (global financial
meltdown) i..e  there may be more of a market for AL/providing services,
than assuming there are infinite numbers of active seniors who golf,
but need no care.

i have heard stores of senior communities --- either those like my nmother
was in (which was an ageing in place: indendpenet to al to skilled to
hospice/dementia) or which are mainly independent/active, but you can
contract for some services --- that they are all going after the
active/independent market --- concierge services offered. they dont
want to deal with the frail; they want to appeal to a more youthful market.

did your research turn this trend up?
  

    
Haven't seen that, but I wonder why it would work any better this round than
15 years ago, when developers were madly building assisted living.  Their
business model was that they'd get fairly healthy people in their 70s who
would live there for years while aging in place.  But we all know that's NOT
who moved into assisted living.  People who are youthful and active stay in
their own homes, by and large, adding home care services until they feel
they have to move -- by which point they're in their mid-80s and older with
multiple health problems, and their average stay in assisted living is just
27 months.

Why would that change?

I'd like to hear about some of your experiences with these continuing care
communities, which combine independent living, assisted living, a nursing
home, sometimes for big initial buy-in fees.  My growing sense is that peopl
love them when they're still in IL, love the sense of security of knowing
that higher levels of care are available when needed.  But then, when they
are indeed needed, nobody wants to move into AL, and everybody still hates
the idea of moving into the nursing home.  Just read a study on this that
indicates that same dynamic.  Whether it's across the campus or up two
stories or across town, people Just. Don't. Want. To. Move. People with
greater needs and less capacity are still stigmatized, even by the people
who were until recently their peers and neighbors.  Have you found that?
  

    
Are our expectations for affordable elder care realistic?  I don't see how
they are.
  

    
what my beloved gcm said she liked is that  the plethora of AL facilities
meant that people who previously would have gone to skilled (where they
really didnt need to be) had a good/better alternative. and maybe at that
age, 27 months (2+ years) is found time/a blessing.

at least arounbd 2002, in southern calif, there was a shortage of space in
good skill nursing facilities (so you needed to try to get into the
higher-level rooms at the same ageing-in-place facilities) and the places
with good reps for AL --- often had waiting lists. idea was, you had
priority when the elder needed the moved to skilled nursing.

yet, with my mother, for reasons that still arent clear, she was kicked
out of her longterm care facility (she was demented, but not violent or
harmful) --- so i had ti scramble to find her a homey b+c facility.

so it seems there are no secure guarantees anywhere for continuity of
care.

wrt to the expense of eldercare, i used to snort when i would read economist
types prognosticate about the massive transfer of wealth from elders
to booms (this was pre-gfm, and pre-madoff, but still). i would think
'no all that money is not going to get transfered to boomers. it's going to
be dribbled away on a broken misery-making eldercare system --- where the
people who do the hardest, most taxing, and ickiest work --- are paid about
what someone at costco is paid'.

also, strictluy imho, i found the skilled nursing facilities so noisy etc
that i couldnt see how anyone could get better/get any rest in them.

so again, if i had it to do all over again, i would have probably moved
my mother to a b+c much much earlier.
  

    
One thing my mom complains about in my dealings with her is that I
don't empower her as she empowered me. What she misses -- despite her
long term battles with her own intractable father -- is that I can't
encourage her to feel empowered about things she really can't do
anymore, lke drive. It's horribly sad. Is there a new style of
geriatric psychology that would help us both confront this issue?
  

    
well, how can you find ways to help her have some control
over driving? picking the service that drives for her?
the driver? reframing/finding alternatives/finding the one
positive bit in the situation --- these can all help.

again a case where a geriatric case manager, trained
in social work --- nmight help. mine was a goddess,
and sometimes i did just whine to her, as to a therapist,
and talked with her about solutions as one would do with
a family therapist.
  

    
Good ideas.

Amy, there are geriatric psychiatrists but I think they are often more about
drugs.  A social worker with a geriatric practice or orientation is probably
closer to what you'd need.

Loris, I do think that 27 months in an assisted living facility can be a
good outcome (and of course that's just an average) -- as long as people
understand the reality.  These places tend to market themselves as allowing
aging in place, the last home your mother or father will need.  Sometimes
true, but usually not.  So I don't knock assisted living as an option --
it's quite true that there used to be people in nursing homes who didn't
need that level of skilled nursing round the clock, but who had nowhere else
to go.  Assisted living, including smaller and cheaper board and care homes,
is a welcomed option.  I just think ffamilies need to know the reality, that
it's more a way station than a long-term home.
  

    
On affordability, we should all be paying attention to the CLASS Act,
sponsored by Ted Kennedy, now slowly making its way through various
Congressional committees.  If this is included in the health care reform
package, as its advocates hope, it could really transform the landscape.

It sets up a national insurance trust for long-term care.  Working people
pay a moderate premium, projected average is $65 a year, much less when
you're young, much more when you're old.  If you're disabled, at any age, it
will pay benefits of $50 to $75 a day depending on disability level -- for
as long as you need it, no cap.  It's not a princely sum, but $1500 a month
pays for half of assisted living in many places (not SF or NYC, sadly).  Or
for most of adult day care.  Or for 3 or 4 hours of home care, plus you can
use it to hire a relative.

Like long-term care insurance now, but cheaper and lasts a lifetime.  The
Congressional Budget Office says the premiums would have to be much higher,
more like $110 a month -- still a bargain in the current market.

I'll be blogging about this on nytimes.com shortly, but here's a preview.
Families who think this a fine idea ought to be nudzhing their Congressmen.
The CLASS Act is in the package the Senate committee just approved, and the
Obama administration supports it.  But there's a Senate committee and three
House committees still to go before it's clear whether the Act is in the
final package.
And then, ofcourse, the final package can be voted down, and might be.

Big mistake up there -- projected average premium is $65 a MONTH.  But you
knew that.
  

    
How do we deal with different judgments about quality of life.  I
imagine that there are people who would consider the quality of my life
(Great to me at 71) to be not worth it.  Some may be so imprinted with
their youth (possible illusory) that any thing substantially less
cannot be compensated by the benefits(?) of age (wisdom?,
grandchildren?, "the golden years"? etc. ).