Inkwell: Authors and Artists

    

Paula Span <pspan> writes the New York Times’s New Old Age blog, which
explores the changing face of aging and eldercare.

<http://newoldage.blogs.nytimes.com/>

This is a world-readable topic where we can discuss Paula's blog posts and
the issues she raises and investigates.

A veteran journalist, Paula is a former Washington Post reporter who has
also written for the Philadelphia Inquirer, the Boston Globe, the Wall
Street Journal and a raft of magazines. She teaches the next generation of
journalists at Columbia University's Graduate School of Journalism. In her
2009 book, "When The Time Comes" Paula profiles several families going
through transitions with aging parents.

More information on Paula and the book is available here:

<http://www.paulaspan.com/>

You can follow Paula on twitter, @paula_span

On the WELL, where she has been a member for almost twenty years, Paula co-
hosts elderpri, a confidential conference where members discuss their own
experiences caring for aging relatives.

In this topic, we can discuss the New Old Age blog posts.
  

    

First of all, a thousand thanks to Paula Span <pspan> for joining us in this
topic, for being a co-host of the elder.pri conference here on the WELL, and
for doing the blog.

The most recent post on the blog is here:

<http://newoldage.blogs.nytimes.com/2013/11/08/a-very-ungrateful-old-lady/>

This post was written by Sheila Solomon Klass, not Paula, but it's a great
post from an 86-year-old with limited vision. She writes from the
perspective of being the person who needs assistance but has a difficult
time accepting it.

She doesn't want to be a burden.

I love this bit, "My daughter comes to pick me up and suggests we take a
taxi. I nix that idea and say I prefer the subway. The A train. If it was
good enough for Duke Ellington, I say, it’s good enough for me. So we take
the subway."


It very much reminds me of visiting my grandmother in NYC. She (even when I
was over 40) would remind me how much I liked to take the subway with her
when I was a kid (from the country) when we'd suggest a cab or a car service
in her later years.

Paula, what do you think of the post and the large amount of comments it has
inspired? (Over 300.) It seems like some people respond with something akin
to, "Well, just be grateful!" I think she obviously is grateful, but
struggling with being gracious.
  

    
I love the post and encouraged Professor Klass (whose "doctor daughter" is
Perri Klass, author, NYT Science Times columnist and NYU journalism chair)
to submit it.

And I *knew* it was going to touch off a wave of comments, but 300+ is even
more of an outpouring than I expected.

In writing the blog, in giving talks, in fielding informal questions from
friends (and strangers), possibly the most common lament from adult children
I hear is that they are trying to help their parents or other elders, and
the older people find reasons to resist every attempt. There's always some
reason the elders say No. No. No.

I liked the idea of hearing from someone who could explain that
recalcitrance. Who could trace the roots of that need to assert
independence, even when she knew it was illogical.

Readers were not real sympathetic, for the most part. They didn't buy that
an 86 year old couldn't change and be more gracious and grateful to the
adult children trying so hard to help her.
  

    
I think it's great that Ms. Klass was able to put into words how she
feels about growing old and accepting the help from her children.  Yes,
it would be great if she could change her ways and be happy to receive
the assistance, but she just can't.  

I am often off put but commenters who don't have the compassion to
understand another person's pain.  Ms. Klass never says that she thinks
it is acceptable to be a curmudgeon, only that she is one and she
doesn't know how to change that.  It is who she is at her core. One can
only hope that her children know this about her and forgive her for
her grumpiness.  It seems as though they do, based on their continued
devotion to her and their ongoing assistance. 

It is true that you are who you are.  My grandmother was also a child
of the depression, raised in an orphanage by the kindness of strangers.
 She was always appreciative of the kindness of others, despite never
wanting to be dependent on anyone ever again. WHile she would take
assistance with grace and decency, she would NEVER agree to live
anywhere other than her home.  In her late years she would have
benefitted from independent living or assisted living, but she would
not hear of it. 

It was difficult for us because we knew she would be better off with a
different living environment. In her most generous moments, she knew
it, too.  But it was in her soul.  We want our elders to change for our
convenience, but really it is we who need to accept them for who they
are and help them based on who they are.
  

    
Right, she was describing her behavior and explaining it, but not
particularly defending it.

I wonder if there's not an element of ageist stereotyping wafting through
here, too.  Aren't people supposed to "mellow with age"? Don't we prefer to
describe older women as "sweet little old ladies" or even, god help us,
"cute little old ladies"?  Ms. Klass clearly has no interest in being
adorable.

However, I think it's probably easier to read her essay than to be one of
her kids.
  

    
yeah I loved that essay, really loved it, but it also brought up some
painful memories of trying to help my own father (who is pretty healthy
and doesn't need a lot of help, at least so far), who can be a bit of a
curmudgeon as well.

I hate the adorable/cute old ladies stereotype. But also, I don't think it's
ageist to be exasperated or angry with people who are hard to get along
with, no matter what (adult) age they are. I actually struggle with this 
a bit. Sometimes I feel like I'm talking down to my dad when I don't 
argue with him or let statements that feel a bit outrageous to me pass. 
One of my sisters still argues with him fiercely--they have a quite 
contentious relationship--and in some ways I think she's being more 
respectful of him than I am.
  

    
I'm one of the ones who thinks Old Mrs. Klass should make an effort to
be a bit more gracious. 

"I just can't help it." Sorry, but no, ma'am, you can. We aren't
forever "who we are," which is one of the recent discoveries of brain
science. We are much more malleable than that, even as we age.

For her sake, I'm glad her kids love her enough to put up with her
self-centered controlling. I probably would too. But I hope and pray
that if ever I become so helpless, I won't feel I'm entitled to call
all the shots, decide whether we take taxis or whatever, regardless of
the inconvenience to my kids or my caregivers, because "I just can't
help it."

What if she were fifty? Would we be so compassionate with her need to
control everything then? 

And I like <katecat>'s point that in not standing up to an old person,
you are, in a way, condescending to them.
  

    
I can see it both ways. (the reporter's curse)

I like what a social worker told me once: People who are truly, entirely
independent and need no help from their families get to continue calling the
shots, unpleasant as that may be for their relatives, so long as they are
cognitively intact (which is sometimes hard to gauge) and can manage on
their own.

But once they need, ask for or accept assistance, then the terms of
engagement becomes a negotiation.  Then the helper and the helped both have
to compromise.  That's the point at which, if Prof. Klass needs to be
escorted to her macular degeneration treatments, her daughter gets to say,
"If I'm going to travel there and back with you, which I am happy to do, we
are going to take a taxi."  And the point at which you'd like to think the
older person, however fearful of being a burden, would acquiesce and at
least take the taxi one way.
  

    

I felt like calling herself ungrateful was acknowledging how she is being
perceived when she finds it difficult to accept or ask for help.

re: katecat's point about continuing to argue or letting it go-- that is
complicated with parents. I mean, on one hand, maybe you're not arguing a
point because they are old, or maybe after 40+ years, you've learned that
that argument isn't going to help anyone. (Did that make sense? I mean that
with relatives of any age, sometimes you let it go for your own sanity.)
  

    
By the way, the author herself just checked in, in the comments section.
She sounds quite unrepentant.

An excerpt:

What did I learn from all of this? Alas, not so much: I already knew I was
lucky to be so old and still alive. I also knew I have remarkable, loving
children. And glorious grandchildren. And that life will get harder as I
age. And I predict that I will be a crustier and crustier old woman -- I'd
be lying if I told you anything else. After all these years, I know myself.
  

    

My wife and I are childless and only children besides. Every so often we
look at each other with the obvious question in our minds - will we get
to the point of needing help. And who will be there? That relates to the
"Hiring an End-of_Life Enforcer" piece you wrote 10/24. We're hopefully a
couple of decades from that point, but we'd be foolish not to consider it
starting now.

We have advanced care directives and that covers health care. But of
course there is so much more to being old and needing help.

I'm not sure what the answer is for people like my wife and me, but
I am aware of the problem.
  

    <scribbled by katecat Tue 12 Nov 13 08:31>
  

    
wow that is a tough problem. We're childless too, but I am one of six
kids and my husband's one of five, both close families, and it's hard for
me to imagine not knowing there is always a home out there by Robert
Frost's definition -- some place that when you have to go there, they
have to take you in.

(not that our siblings are our retirement plan, I hasten to add--it is
just so strange to me to think of not having them there as a sort of
backstop)

paula, haven't you done a column on people who create their own retirement
communities with friends, or did I make that up? that seems like one
solution.

brady:
> with relatives of any age, sometimes you let it go for your own sanity

that's a very good point.
  

    
This topic comes up ALL the time.  Our generation is more likely not to have
children.  And U.S. eldercare policy (a patchwork that isn't even worthy of
the word policy) does see family as people's retirement plan and source of
long-term care.

So yes, some folks are trying to put together care committees:

http://newoldage.blogs.nytimes.com/2012/03/21/care-by-consensus/?_r=0

And some are using professionals (lawyers and geriatric care managers) to
serve as health care proxies:

http://newoldage.blogs.nytimes.com/2013/09/23/when-theres-no-family/

Plus, folks are thinking about inventing a new profession, the health care
fiduciary:

http://newoldage.blogs.nytimes.com/2013/10/24/hiring-an-end-of-life-
enforcer/

Though that hasn't been tried yet.

Mostly, I think people are just...worrying.  As jcarlin says above, older
people need more than decision-makers when they're incapacitated, which is
what advance directives handle.  They need rides to the supermarket, and
someone to replace light bulbs, and just company and social and mental
stimulation. Not even to mention, a sense of purpose.
  

    

Thanks for the links. We also have no kids and very little in the way of
immediate family, so the post that started this conversation made me
consider life down the road there, too.
  

    
I only hope the curmudgeonly woman who doesn't want to accept help
doesn't implode when she reaches the point where she's no longer able
to refuse it. That point does exist, and it's where her desire not to
be helped, regardless of whether she needs it, makes her a danger to
herself. Refusing to take a cab when she can still manage the subway is
nothing in comparison to, say, insisting on continuing to live alone
in a two-story house when she can barely climb the stairs.
  

    
My Mom passed away this past summer at age 84. She was less and less
independent in her last 3 years, but still lived at home. She had a
serious stroke, and lasted two months in a nursing home and then was
gone.
   In some ways, that was fairly easy. She also had five kids who were
able to handle the details, which were complex and numerous. For
others who have no kids, it seems to point to the need to designate
someone in the larger family (if you have one) to take responsibility.
    I have two kids, and have slowly been bringing them up to speed
about what I might need, since they are still fairly young. I've set
things up so money won't be too big of an issue, but you never know. 
     It is best to have the attitude that you need to prepare,
whatever that means for your individual situation. Not preparing means
that you and whomever winds up dealing with you and your estate will
have a hard task in front of them. 
  

    
The worst thing is to have siblings warring among themselves over
money while the parent slowly fades away. It's a bad and endless
Tennessee Williams play. Not me, but I have friends who've told me.
  

    
Yeah, that is a true horror.  And apparently not uncommon.

Unasked for advice: Do not designate two health care proxies or give durable
power of attorney to two children, or two of anyone, unless you are
absolutely sure they will be in agreement.  And how can you be?

Me, I have one sister who is disabled and likely to predecease me, and one
daughter I do not wish to burden -- that word again.  So I have bought a
long-term care policy, which is probably not a great substitute for having
been fruitfull-er and multplied more, but it's the best I can come up with.
  

    
No children here, either, though my husband's daughters from his first
marriage are very close to him, friendly to me. Who knows what will
happen?

Paula knows that since I snoop around artificial intelligence a lot,
I'm looking at robotic caregivers. (Not for myself yet, I hasten to
add, but as a phenomenon.) They've existed in prototype for ten or
fifteen years, but now things are getting serious, driven by
demographics (there just aren't enough people to look after all the
elderly who need care) and by finances. We don't put money there.

The EU expects to launch a giant program of smart houses, smart
machine assistants in two or three years; the idea has had traction in
Japan for some years for the obvious reasons. Thursday I'll go to hear
a talk by one of the foremost designers of such "assistive robots" and
I'll be able to say more. 
  

    
> Do not designate two health care proxies or give durable
> power of attorney to two children, or two of anyone, unless you are
> absolutely sure they will be in agreement. 

I'm not sure you need to go as far as being sure they will be in
agreement.  What is important is that you are sure they know how to
communicate with each other civilly, and work towards consensus.  In
which case, if that is possible, I see many benefits to having multiple
people sharing the responsibilities of health care and fiscal proxies.
  

    
I see your point, David, but often these decisions have to be made very
quickly.  Even with two people who are civil and consensus-building, that
process can take a while, and meanwhile the ER staff needs to know: intubate
or not? Or the ICU folks want to know if you approve a feeding tube.  You
can get around this, maybe, with very extended conversations beforehand or
with a POLST document (physician orders for life sustaining treatment) --
but in that case, the decisions are already, in effect, made.

I could more easily see designating one person your health care proxy and
giving another your power of attorney for financial matters.

Want to hear more about the robots!  Because yes, serious shortage of all
kinds of professionals for eldercare in the years to come: geriatricians,
geriatric psychiatrists, home caire aides, etc.
  

    
There's a lot on the web, but as I say, I'll hear one of the expert
designers and builders on Thursday. She's building them not just for
elders, but also for stroke victims, people with autism, people
otherwise disabled. 

CMU deployed such an eldercare robot about ten or fifteen years ago.
It has an interesting story. Its designer was Sebastian Thrun, better
known later as the designer of the self-driving car that met the
25-miles-through-the-desert challenge for DARPA, and later a founder of
Coursera. 

He originally wanted to build an eldercare robot because, as a young
roboticist in Germany, he realized his beloved grandmother might be
able to stay in her own home longer, and alone, if she only had to help
her what he knew he was capable of building. It went on from there.

We tend to compare robots with the ideal, dismissing robots because we
pretend that everyone would of course have access to ideal care. Alas,
not so. 
  

    
There was a comment up there about along the lines that if the kids
are helping, they should be able to say to take a taxi, not the train.

For me that brings up the issue of why we help people in the first
place. It's hard to be completely selfless. If we were selfless, we
might say, yeah, I'd like to take a taxi, but she's watching elements
of her independence slip away and if this makes her feel like she's
still a vibrant train-riding kinda gal, then let's go.

So many times we have string attached to our efforts to help. It needs
to be on our terms, we need the proper gratitude displayed, etc. I
know when we tried to help an elderly neighbor last year, we wanted his
reaction to be X. We wanted him to say, yes, you're right, I need to
do that, I'm on board. He didn't say that. He said no thanks. And we
felt a bit rebuffed and a bit like, ok, suit yourself, harrumph. But
that was about us, not him. Yes, we worry about him, but it's clearly
critical to him to be independent as long as he can, and even longer
than is wise. And I think he's got the right to make that choice.

Her kids have the right to say, if she's not going to make it easy on
me, i.e. take a taxi, then I'm not going to help. But then recognize
what's really going on. 

I disagree with commenters on her post who think she should show more
gratitude. She raised her kids. She (one assumes) wiped their snotty
noses, fed them, saw them through illnesses and crises. Are they
supposed to thank her? If they want to help her at this point in her
life it would be great if she could say I love you, I'm glad you're
here, but she doesn't *owe* it to them, imo.
  

    

As a person with multiple severe disabilities starting in my twenties,
disabilities that completely altered more than thirty years of my adult 
life, I recommend awareness of and appreciation for reality. It is the 
best guide to both who one is (at the moment) and what one can do (in the 
moment) and on whom one can rely (for the moment). None of those are fixed 
in any way, however habituated we may be to stable notions about ourselves 
and life in general.
  

    

I found the most recent post (by Paula) about cochlear implants for older
people fascinating.

<http://newoldage.blogs.nytimes.com/2013/11/11/a-different-kind-of-hearing-
aid/>

This paragraph:

"Perhaps the heart-tugging YouTube videos of deaf toddlers suddenly hearing
sounds have led us to think of cochlear implants as primarily for children.
Or perhaps, said Dr. Frank R. Lin, a Johns Hopkins University
epidemiologist, we consider late-life hearing loss normal (which it is),
“an unfortunate but inconsequential aspect of aging,” and don’t
explore treatment beyond hearing aids."

probably summed up my thinking.

But, boy, with people living longer and being generally healthier longer,
considering implants suddenly makes a ton of sense to me.

My husband (50) has Meniere's, and has hearing loss associated with that.
He just got his first hearing aids a couple months ago. Even using the
hearing aids, he still needs to "practice" hearing-- relearning to pick out
the right sounds now that he can hear some of them.

Because his loss isn't quite the same as much age-related hearing loss, and
it can be variable, I don't know if this would be an option, but after a
very challenging last year (for both of us) it's eye-opening to even have it
to consider.

I am sure many of us here have stories about friends/family elderly/or not
coming to terms with their hearing loss.

What finally pushed my husband over to accepting how it was affecting us as
a family and not just him was when I confessed that I was often following
along behind him in social or just transactional settings apologizing to
people who thought he was being rude.