(dana) Tue 7 Jul 09 10:28
We're very happy to welcome our next guest to the Inkwell. Paula Span is a veteran journalist. She spent 16 years as a Washington Post reporter, has freelanced for dozens of publications, and now teaches at the Columbia University J-School. She contributes frequently to the New Old Age blog on http://www.nytimes.com. She's a native New Yorker, a theater goer, a movie buff. She keeps tabs on her 86-year-old father (see http://www.paulaspan.com ) and is a caregiver in waiting. Leading the discussion is Lisa Harris. Lisa is a business owner, mom, and co-host of Inkwell.vue on The WELL. Lately, Lisa has also been a distant care-giver for her mother, and an involved, yet non-primary care giver for her 95 year old grandmother. In her spare time, Lisa likes to bake bread and practice Tae Kwon Do. Welcome, Paula and Lisa!
Lisa Harris (lrph) Tue 7 Jul 09 12:05
Thank you, Dana! And thank you, Paula, for joining us and for writing this very important book. You call your book a "support group in print" which I absolutely love. You cover it in the Introduction, but for those people who are joining in who haven't read your book (yet), can you tell us what brought you to this subject?
Paula Span (pspan) Tue 7 Jul 09 16:44
Greetings all. I'd written a couple of looong cover stories for the Washington Post Magazine in the past few years, one about assisted living and one on delayed retirement, so some of the demographic shifts and caregiving issues were on my mind. I'd been reading a lot of economic research, a bunch of gerontological studies. But really, what spurred the idea of writing a book about adult children caring for aging parents was this change you can't help noticing when you hit your late 40's and 50's: Suddenly, the folks you run into at the supermarket or the gym, the ones you used to talk to about your kids, are all talking instead about their parents. It's just in the air. We used to chat about getting our kids into Middlebury and now we're worrying about getting our mothers into assisted living. Instead of SATs, we're swapping information about ADLs. [ADLs: activities of daily living. It's the way professionals assess how much help someone needs. Can she bathe herself? Dress herself? Feed herself?] Anyhow, I was becoming aware that my boomer peers and I were not very well prepared for this mission. And I thought that by following some families through this transition as they had to figure out how best to help their fathers and mothers, I could illuminate the landscape a bit.
Lisa Harris (lrph) Tue 7 Jul 09 19:33
For me, the format was great. The personal stories made it real, but the information you provide is and will continue to be valuable. Additionally, each chapter was about a different kind of care. Could you give us a brief description of the kinds of care (and caregivers) that you encountered?
Paula Span (pspan) Tue 7 Jul 09 22:53
I wanted to cover the major options available to people "when the time comes." So there's a daughter trying to keep her mother in her little house in the Bronx. She hires home care aides. (Her challenge is to keep hiring them as fast as her mother fires them.) There's a daughter who moves her mother into her own household -- the multigenerational family. In Boston, two families consider assisted living. One person moves in, one doesn't. Two families place relatives in a nonprofit nursing home outside Trenton, N.J. And in Baltimore, two families enroll in hospice care. Around those sagas, I've tucked and woven a lot of useful information -- academic research, government statistics, interviews with experts -- and there's a long resource list at the back. But the family stories are the heart of the book.
Lisa Harris (lrph) Wed 8 Jul 09 06:43
They really are. How did you find them?
(dana) Wed 8 Jul 09 11:10
(Note: Offsite readers with questions or comments may have them added to this conversation by emailing them to firstname.lastname@example.org -- please include "When the Time Comes" in the subject line.)
Ari Davidow (ari) Wed 8 Jul 09 13:39
This is a timely discussion. I got an email this week that my mother is reaching the point where assisted living may be the best option. We now need to figure out how to provide for someone who has been living on social security in a foreign country (Israel, in this case) with very limited savings, into a place in the US because that is the language she knows, and it is very unsettling to think of putting her in a living siutation where she likely will not be able to communicate well with the caregivers. So, what options do we have? (Do we have options?)
Paula Span (pspan) Wed 8 Jul 09 14:26
How I found families: Oh, the usual journalistic juggling act. One or two came through friends of friends. The folks who were considering moving into a facility, I could locate by calling 20 assisted living places in and around Boston and asking, "Who've you got on the list that's considering moving in and might be willing to hear from a reporter." Ditto for the hospice patients, though they were already in care. The multigenerational family, the daughter responded to a notice I was placing in small newspapers and weeklies in upstate New York. Of course, there were folks who said no (or said, "Are you out of your mind?), because I wanted to be able to spend LOTS of time with people, over many months, as they figured out what to do and then did it and then reflected on how well or badly the transition had gone. It's a very stressful time, so some people were understandably reluctant to make that commitment. And some bailed when they learned that yes, I did want to use their real names. No fake names, no composites. In fact, you can see the families -- their photos, old and new, and some videos -- on the website, paulaspan.com. But in the end about a dozen families agreed to work with me. Partly, I think it is somewhat therapeutic, in the midst of this draining and sometimes lonely experience with one's parents, to have someone sit and listen, nonjudgmentally. Reporters are good at that. But also, I think they recognized that they'd learned a whole lot in a short time, and they thought that by allowing me to tell their stories, they might share their knowledge with others. That's why it's a support group in print. Ari, you need to move your mother into AL somewhere around Boston? Is she English-speaking or Hebrew-speaking; I was a bit unclear.
Paula Span (pspan) Wed 8 Jul 09 14:28
Sorry, I misunderstood. She's been living independently in Israel but she's American and you want to move her back here where she can communicate with caregivers -- but she can't really live completely independently. Is that right?
Elaine Sweeney (sweeney) Wed 8 Jul 09 15:45
I've had a lot of difficulty just posting in your blog, Paula -- this is so charged for me, having just gone through my father's cancer and death. And charged for the other relatives too... the thought of having it out with our real names on makes me shudder. Part of it is the financial component which has always been not up for discussion in the family.
Lisa Harris (lrph) Wed 8 Jul 09 16:10
I think I would have said yes, if I were a candidate. Mostly because I think this type of book is so useful, and I know I wouldn't be able to write it myself. All of the families seemed to be pretty high funcionting to begin with in their relationships with each other. I'd guess that the more dysfunctional the family, the less likely they would want to share with the world.
Julie Sherman (julieswn) Wed 8 Jul 09 17:51
Hi Paula, I am in the middle of your book and think it is a wonderful resource for families at this stage in their lives. In the several months before my mother died of cancer, my sister and I hired a number of home health aides to help during the day and then stay through the night. That section of the book Some of them, one in particular, was lovely. The best was a young, very educated woman who loved to read and was amazed at the number of books in my mother's house. She had some experience with people on the edge of death and told my sister and me some things to look out for and to be prepared for. Other aides were less than great. One tried to talk Jesus to my Jewish (not very religious) mother. Another was a recent immigrant from Kenya. she was friendly but did not know how to make scrambled eggs. Well she may have known how to make them but when my mom asked for scrambled eggs, she didn't know what Mom meant. Another aide was really afraid of death and absolutely did not want to be there when Mom died. Of course mom died on her shift. But all of these aides helped my mom to be able to die at home, which is what she wanted the most. Mom did not get very much use out of hospice, partly because she entered too late and partly because the hospice that my mother's oncologist referred her to was not as good as I would have liked. After having worked with HIV/AIDS clients for 15 years and having known extraordinary hospice nurses, I was pretty annoyed with that.
Paula Span (pspan) Wed 8 Jul 09 20:14
Ari: I think the first order of business, if you're moving your mother back here, is to get an assessment: What are her health problems, how much help does she need with what, is she fully lucid, etc. etc. I wouldn't necessarily assume that assisted living is what she needs. She might be able to function in a small apartment with some home care. She might be able to live in her own place and go to an adult day program. Or, she might be too frail or have too many health problems to stay in assisted lilving for very long. So who does good assessments, and can then help you figure out the next step? A local Jewish Family Services or other social service agency. If we're talking Boston, there's a full-service geriatrics at Mass General with social workers that's a model of what elders should have access to everywhere, but rarely do. (Sorry, that should be a full-service geriatrics service.) And there are a lot of GCM's: geriatric care managers. These are social workers with additional training and credentials who can assess a senior's condition and situation and help the family navigate the system and find solutions. Pricey, but worth it if you can swing it, and some social service agencies do geriatric care management on a sliding scale. There's a locator on the website of the National Association of Professional Geriatric Care Managers. Yes, you have options, more than families used to. Which is A Good Thing, overall, but it also makes these transitions more confusing.
Paula Span (pspan) Wed 8 Jul 09 20:21
Elaine, the blog (I assume you're referring to the New Old Age, on nytimes.com, which I contribute to regularly) is meant to be useful -- please feel no obligation to post. Maybe later, when the emotions and losses have receded a bit. Though you don't have to use your real name if you do want to join the discussion. Lisa, it's true these families were reasonably functional in that there were no substance abusers, no cases in which siblings refused to speak to each other (though several in which they certainly had resentments), no cases of elder abuse by families (though one in which an outsider financially exploited a man with dementia). 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. It's an irrational system, the way we care for elders. If you wade into this area and find yourself thinking, This is just nuts -- well, you're right.
Paula Span (pspan) Wed 8 Jul 09 20:26
Julie, I'm a big hospice advocate. It pains me to hear that the hospice you worked with wasn't top-notch. But overall, I think it's an amazing and underused service. As you mentioned, calling hospice early enough will have real impact on what the staff is able to do for your relative. Even very skilled nurses and social workers and aides can't do much when families bring them in within a few days of death -- yet that routinely happens. Average length of stay in hospice in this country is 20 days, not long enough. Three months or more is optimal. And for the elderly, Medicare pays. So why don't families call sooner? Because they're waiting for a doctor to tell them it's time, and some physicians refer to hospice and some don't. Because they're unaware of what hospice can provide, or mistakenly think of it as a place instead of a service. Or because they don't want to acknowledge that someone is dying. Nothing makes this stuff easy. But hospice can make it a little less hard.
smuggling raisins into the Last Supper (carolw) Wed 8 Jul 09 20:29
Paula, I'm so glad you wrote this book. I need this kind of information badly right now. I just watched the video of you and your father on your website. It was great to see you! Your dad and my mom are the same age and at about the same level of need, though probably my mom needs more help than she gets. How far away are you from your dad? And does he still drive? I think it's great that you insisted on real names; can you talk about why? I would have participated too if I qualified, but I can imagine the 'no pseudonyms' was a problem for many.
Fawn Fitter (fsquared) Wed 8 Jul 09 22:38
Paula, how much is it possible to help a parent who refuses help? I would love to connect my mother with resources, but I can't get her to agree to an evaluation because she doesn't want to have to admit she's anything but hale, hearty, and practically immortal.
Julie Sherman (julieswn) Thu 9 Jul 09 07:41
I just read in your book where one of the women had a urinary tract infection and then afterwards became more angry and disoriented. I help an elderly woman who lives in an assisted living facility and the social worker there told me the same thing, that she often sees disorientation and personality changes after a UTI. I never knew that before. So many aspects of growing old are not well-documented or generally known.
Lisa Harris (lrph) Thu 9 Jul 09 07:47
About 3 years ago, my grandmother really seemed to lose her mind almost over night. Turned out to be a UTI. But it took us (what I thought) a long time to figure out. My dad's siblings had gone so far as to look into an Alzheimer's/Dementia wing at an AL facility before the doctor figured out what was really wrong with her. Scary when you think about it.
Lisa Harris (lrph) Thu 9 Jul 09 07:50
Paula, were there any facilities that were less than forthcoming with you? Or more to the point, did you encounter anyone or any facillity that you just thought so poorly of you didn't include them in your book? (No need to name names, of course.) How did you parse out the good from the not-so-good from the truly awful?
Ari Davidow (ari) Thu 9 Jul 09 07:54
Paula, in our case my mother has been living with my sister in Israel. She has had several falls, and it has become clear that the current situation will not be tenable for long. As with everyone, there are a host of family issues around money and lack thereof (not to mention the usual family foo). It's going to be a difficult year, I think. My wife will be in Israel in a couple of weeks and will get her own impressions. In the meantime, I'm just trying to figure out options. The one option that won't work is having her live with us unless we move to a less suburban area where there are friends and places to go in walking distance (however slowly she walks). All of the grandkids are in Israel, so we haven't wanted to move her. On the other hand, her surviving sister is here in Boston, so this isn't a bad choice if language matters, as I think it increasingly will.
Elaine Sweeney (sweeney) Thu 9 Jul 09 08:01
Yes, Paula, the newoldage blog. I have taken advantage of the ability to elide my real name when I post ... One thing that has dismayed me reading there is the emotion about what others are/aren't doing with their elder relatives. Did you run into that much working on the book - this anger that anyone not sucking their aging parents into the nuclear family was contributing to the decline of Western civilization?
Paula Span (pspan) Thu 9 Jul 09 09:31
Carol, my dad is hanging in there nicely at 86. He uses a walker, because all though his stamina is pretty high, his balance sucks after a bout of Bell's Palsy a couple of years ago. But so far, so good. However, whenever the phone rings before 8 in the morning, my heart races a bit. I'm thinking, "Is this the call?" You know, THE call. I spoke at a JCC in Tenafly NJ last night, and one of the geriatrics specialist there pointed out that we have 10 months in which to prepare to become parents (and of course, lots of people prepare before pregnancy). But we can become a caregiver with a single phone call. I wanted to use real names because a) that's my journalistic training and background and b) I wanted readers to know that these were not composites, that I wasn't concealing identities, that this was reality and real people. Also c) I knew I would want to feature some of these families, their stories and photos and videos, on a website and that would require identifying them. And while we're at it, d) Why wouldn't I identify them? Reporters conceal identities if a subject has done something illegal, or is in some danger of retribution or backlash for talking to the press, situations like that. So I'd agree not to ID someone who faced deportation for being undocumented, or a whistleblower in danger of losing a job. Some years ago, I agreed not to ID certain people with AIDS in a time when houses were getting firebombed or kids kicked out of school (I wouldn't do that now). But someone taking care of a parent isn't doing anything shameful or unlawful, so why give readers the credibility of knowing that this is a real -- sorry, let's start again -- why NOT give readers the credibility of knowing that this is a real person? That this is her name, her town, her photo? Always my preference.
Paula Span (pspan) Thu 9 Jul 09 09:41
Julie, yes, uti's are one of those ailments that can be pretty minor in a younger person, but quite dangerous (and with very different symptoms) in an older one. Dosages of medications are another example. We need geriatricians, and we don't have enough and aren't training enough, probably because fledgling doctors decide they'll never make much money treating patients who are all on Medicare, and thus paying lower rates for care. Lisa, in trying to find families who were considering facilities, I went to the facilities first, asked, "Who've you got that's considering a move in over the next couple of months?" Anyone who didn't want a reporter around probably just never responded effectively. So yes, there probably is a skew towards better facilities rather than substandard ones. Elaine, I too would think that the difficult job of caregiving would at the least make people tolerant and nonjudgmental about what *other* caregivers choose to do. And in general, I think that's true. The commenters on the New Old Age (http://newoldage.blogs.nytimes.com) are a pretty supportive group. (It helps that the NYT moderates, so not many of those folks with 12 exclamation points after every sentence.) But now and then, you do hear some of that sniping. That it's somehow a shameful thing to use a nursing home (I disagree). That we used to take care of our parents and now we're too selfish and careerist and feminist and whatever. (Demonstrably untrue). That in an immigrant's home country, everything is so much better. (Often, a system that relies on the unpaid labor of women. And also relies on shorter lifespans.) What can you say? I think most people understand that families are cobbling together arrangements the best they can, changing them when they must, stepping up to a tough job without a lot of support.
Nancy Montgomery (nan) Thu 9 Jul 09 09:43
Paula, has doing this book changed how you look at your own aging process?
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