Inkwell: Authors and Artists

    <scribbled by autumn Sun 28 Jul 24 11:01>
  

    
seems to me 'quality of life' is determined by the person who has that life.

funny, i hadnt realized AL was marketed as 'the last place your elder will
need to be'. in my interactions with the eldercare world, it always seemed
like it was presented as 'a good place to be for now'. now it is true
no one much wanted to -talk- about what happened AFTER AL --- but then,
that is so much a crapshoot: dementia facility? skilled nursing? in a coma?
dead?
  

    
>>Forming or maintaining good eating
and exercise habits, looking into long-term care insurance,

Heh.  I would be tempted to recommend the opposite:  Eat junk and
don't exercise, and 'hope I die before I get old.'  LTC insurance in
case it doesn't work.
  

    
Daughter-in-law in my book, walking out of an AL apartment where her 96-yr-
old MIL is having a pretty lousy life: I don't want to live that long.  I
think I'll take up smoking and drinking.

Robert, I think YOU get to determine what constitutes quality of life for
yourself, don't you?  So many things contribute (health, personality, social
connections) that I think we'd all shudder to formulate some set of
universal rules.  It's clearly not a function of age alone, and maybe not of
health status, either.  The conductor Edward Downes who committed suicide
with his wife in Zurich last week was not terminally ill in his 80's, but he
was a professional musician who could no longer hear, who was losing
vitality, who didn't want to try to live without his wife who, though
younger, WAS terminally ill.  He decided his remaining who-knows-how-long
period of life lacked quality and decided when to end it.  I can't disagree.

Where the problems arise, of course, is when people who've lost mental
capacity must rely on others to make such decisions.  It can be a painful
situation to find oneself in.  All the more reason for us to have these
discussions with our families and loved ones while we can, to try to puzzle
through what we would want done and wouldn't, what constitutes QoL for each
of us.
  

    
Autumn, if this discussion is helping you overcome fear of physicians, well,
good!  Doesn't mean you have to cede control -- you will still make your own
decisions based on what you think is important -- but you will have care
when you need it.

The things you mention are probably the best preparation for aging: trying
as best one can to maintain health (not that we get any guarantees),
maintaining friendships and a sense of community, finding interests that
keep one engaged and vital, making reasonable financial plans and possibly
investing in a long term care policy.

I'd also add putting the paperwork in order.  I know I'm a broken record
(old-fashioned cliche alert) on this subject.  Power of attorney, health
care proxy, living will.

And maybe, in one's 60's or 70's, modifying the household you hope to stay
in to maximize safety.  Falls are serious.  Paying for an occupational
therapist to assess your home and suggest where to put grab bars, whether
you need a toilet riser or a walk-in shower or shower bench, proper
lighting.  And as you need it, perhaps a stair glide.  If we want to stay in
a home, retrofitting that home for your needs as you age makes sense.

And maybe thinking about an intentional community or some other kind of
communal response -- I think we'll see more of that ahead.  I live in a town
that in many ways would function well for an older person, but it needs more
services and I should probably start advocating for those before I and my
peers need them.
  

    
I was recently told that if you wait until your 50s to start looking
into long-term care insurance, you're waiting too long.

I would love to have an OT assess my mother's home, because the house
is not well-maintained and neither is my mother, but she won't hear of
it.
  

    
i remember when i was in the middle of the financial management crisis
for my mother, and looking into longterm care policies, at the
time (and this may have changed since then), it looked like the early-mid
50s was the best time to start buying these. before that, i think
you were better off saving/investing the $ (though in this investment
climate...). much after that, the premiums were too expensive.

also --- and this may have changed --- a lot of the longterm care policies
didnt provide much for care in the home. and/or didnt remotely keep up
with inflation. so much examination required here...
  

    
True, which is why ltc is still not a very popular product.  Only 10 percent
of people have them.

You want to look for stuff like: Is it too restrictive in terms of the
number of ADLs required to trigger benefits?  Does it include dementia? Will
it pay for care not only in nursing homes but in your own home or a
relative's, in AL, wherever you are?  Does it allow you to hire whomever you
want to help you, not just people from a licensed agency or a Medicare-
certified agency?
In other words, it should provide a pot of money (and it should have
inflation riders to allow you to periodically increase said pot of money)
that you can use for care as YOU see fit, and not create too many strictures
for how it can be used.

I bought mine at 57 through my credit union.  It should provide three years
of care, which is the average that people need long term care, though it
won't if I don't amp up the amounts for inflation when I have the right to.
Costs me $1700 a year, which isn't bad.
  

    
sounds like you got a very good deal, paula...
  

    
Paula, Mrs. Appell said, "I always hope, in another week, another week, I'll
be back to myself and I won't need help all the time."  This rang so true to
what I hear from my grandmother.  Have the medical advances of the past
century created a false belief that there is always a *better*.
  

    
You know, Lisa, I think they have certainly helped foster that belief.  So
many things that used to be fatal are now converted to mangeable, chronic
conditions.  You had a heart attack?  But now you're better.  You have
diabetes?  But there are all these new drugs.  Blocked arteries?  We opened
em.  Cancer?  We burned it out or poisoned it away or cut it out.

So why shouldn't old people -- AND, not insignificantly, their doctors --
think they can recover from whatever it is, even when "it" is the predations
of age itself?  Often, they can.  Until they can't.

I suppose it's possible that older people *always* felt this way, that few
can really look decline and death in the eye, that this feeling is just
human and not a consequence of the medical environment.  But your theory
makes sense to me.
  

    
I have loved the discussion here, as well as the book. I have referred
several people to it for whom "the time has come."
  

    <scribbled by autumn Sun 28 Jul 24 11:06>
  

    
Paula, what part of this project was the most difficult for you? What was
most rewarding?
  

    
As a congenitally nosy person whose profession gives me an excuse to be even
nosier, I enjoy getting to know families -- really know them -- and to see
how their lives unfold, how they think and feel about these tasks they've
taken on.  And as a writer, I like then assembling all these bits and pieces
I've accumulated over the months to try to portray them, with depth and
complexity and affection and even -- I hope -- some humor, so that other
people feel they know them, too.

And the hardest part, aside from trying to FIND those people and persuade
them to let me hang around all the time, was trying to synthesize the reams
of data and the reports and the expert opinion about various aspects of
aging and eldercare.  It's a massive subject, and I have piles and piles of
research.  Trying to make it comprehensible and readable, useful without
being overwhelming, that was a Major Task.

Autumn, good point.
  

    <scribbled by lrph Tue 21 Jul 09 06:46>
  

    
So what we've learned is there is no universal answer.  What'sthe
 checklist for an adult child of an aging parent?  Where do we begin? What
 are the best questions to ask?  It seems that for each of us the answers to
these very basic questions can be different.
  

    
 You're right.  When we're talking about people who may be in their late
60's or in their mid 90's, who may be physically capable or bedridden,
mentally sharp or barely responsive, there's no checklist that really covers
the territory.

I think we begin by asking our parents about their thoughts, their
preferences, their fears.  Not one conversation -- multiple ones.  Asking
what they would like to do to set things up for their future.  Understanding
that the choices are not
a) I do just what I always have and live
or
b) I die.

That there are a whole range of options in between for those long years when
most old people will NOT drop dead but will live with chronic diseases --
that's the reality of old age for most of our parents.

I think we start the discussion.  We put the paperwork in order.  We begin
to educate ourselves, in a general way, about some of the programs and
professionals that exist to help.  We involve our siblings.

We keep talking.
  

    
Well said.
  

    
Thank you, Paula, Jennifer and everybody.  This discussion sped along,
but the time has come.

We're starting a new book today, but of course you can linger here as
long as you wish.  Possibly related areas on The WELL include the
ongoing http://www.well.com/conf/health/ ,
http://www.well.com/conf/hospice/ and
http://www.well.com/conf/elder.pri/ conferences, just for reference. 
And Paula has a very good author's site here: http://www.paulaspan.com/
with useful information, upcoming gigs and of course how to buy "When
the Time Comes" for yourself, or perhaps for a sibling.
  

    

Absolutely:  keep talking, communicate, learn, explore, keep talking!

I, alas, haven't had internet access lately and am behind here to my 
great regret as I am v. interested in this topic and have loved this 
discussion.  I also  want to add my two cents.

My mother moved into an independent living apartment in a continuing care
community and loved it.  When she moved--briefly--into assisted living with
a roommate who kept talking about coveting her things or simply took them,
Mama, of course, was quite displeased.  The care was inadequate, too, and
the room cramped.  When she had an episode of congestive heart failure, she
moved into nursing care, and once again, was v. happy.  She was the
healthiest person there for the first three or four years, went out with
friends, enjoyed visitors daily, and played lots of winning Scrabble.  So,
my impression of assisted living, as a separate entity, is rather
misbegotten and, in my limited experience of one, think it fits fewer 
people than might be imagined.


Also, I utterly agree about paperwork.  Mama and I had everything in 
order long before it was necessary.  I'd purchased grave plots when I 
was in college because my father disowned for going to Cal and told me 
I'd have to pay to bury him.  Okay, I thought, better prepare now than 
later.  

Now, we have our powers of attorney, wills, trusts, lists of items to go 
to various people, and all passwords in a handwritten file in the safe 
deposit box.  The kids already have copies of some legal documents and 
will receive more as I continue to organize.  Death, disability, and 
incapacity are quite bad enough without making people we love look for 
the housekeys and making it easy for them to overlook insurance policies.


In addition, as a person disabled by multiple sclerosis, I have heard many 
people say they cannot conceive of disability before it happens, but when 
it does, it may be possible to make a jolly good life.  Or not.  Both 
possibilities should be given attentive consideration.


Paula, I want to say that in addition to your in-depth knowlegde of the 
subject and your superb journalistic skills, you have a novelist's gift 
for luring the reader onward.  I often found, at the end of a chapter, 
when I was mulling over the questions you posed and the resources 
provided, I was eager to know what happens next?  What, what?  I wanted to 
rush through the book and find out what happened.  I didn't, of course.  I 
wouldn't have learned as much or thought as much, nor would I have 
honored your purpose in writing.  But I wanted to plunge on.  Your people 
are vibrant and I cared about them.


Thank you so much for this gem of a book.  I, personally, wish it had 
appeared twenty years ago when I was facing caring for both my elderly 
parents, but it is timely now for millions.
  

    
Thanks, Elisabeth, I hope you're right.

And thanks everyone, for joining the conversation.
  

    
I will add my thanks, Paula, and I look forward to finishing the book.
  

    
Lisa, I dont want to forget to thank you for taking on the
discussion-leading and production duties behind the scenes for this
one, so we could all appreciate this conversation.
 
  

    
I'm in your debt too, Lisa.