Inkwell: Authors and Artists
Brady Lea (brady) Sun 10 Nov 13 16:38
Paula Span <pspan> writes the New York Timesâs 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.
Brady Lea (brady) Sun 10 Nov 13 17:02
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, itâs 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.
Paula Span (pspan) Sun 10 Nov 13 19:09
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.
Lisa Harris (lrph) Mon 11 Nov 13 05:32
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.
Paula Span (pspan) Mon 11 Nov 13 12:07
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.
bitchiness is in retrograde (katecat) Mon 11 Nov 13 15:59
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.
Pamela McCorduck (pamela) Mon 11 Nov 13 17:13
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.
Paula Span (pspan) Mon 11 Nov 13 17:30
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.
Brady Lea (brady) Mon 11 Nov 13 17:49
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.)
Paula Span (pspan) Mon 11 Nov 13 19:21
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.
descend into a fractal hell of meta-truthiness (jmcarlin) Mon 11 Nov 13 22:26
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.
Katherine Catmull (katecat) Tue 12 Nov 13 08:30
<scribbled by katecat Tue 12 Nov 13 08:31>
bitchiness is in retrograde (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.
Paula Span (pspan) Tue 12 Nov 13 08:40
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.
Brady Lea (brady) Tue 12 Nov 13 09:03
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.
Fawn Fitter (fsquared) Tue 12 Nov 13 09:33
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.
Don Mussell (dmsml) Tue 12 Nov 13 09:52
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.
Eric Mankin (stet) Tue 12 Nov 13 10:30
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.
Paula Span (pspan) Tue 12 Nov 13 11:10
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.
Pamela McCorduck (pamela) Tue 12 Nov 13 11:46
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.
David (aslan) Tue 12 Nov 13 12:13
> 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.
Paula Span (pspan) Tue 12 Nov 13 16:01
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.
Pamela McCorduck (pamela) Tue 12 Nov 13 18:20
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.
Nancy Montgomery (nan) Tue 12 Nov 13 19:49
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.
. (wickett) Wed 13 Nov 13 10:00
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.
Brady Lea (brady) Wed 13 Nov 13 10:45
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), âan unfortunate but inconsequential aspect of aging,â and donât 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.
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