Every Acid Dealer Gets Busted Eventually (rik) Tue 14 Jul 09 14:17
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.
Paula Span (pspan) Tue 14 Jul 09 15:43
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.
For Rosetti, wombats held a peculiar fascination (loris) Tue 14 Jul 09 16:21
Lisa Harris (lrph) Tue 14 Jul 09 16:25
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.
For Rosetti, wombats held a peculiar fascination (loris) Tue 14 Jul 09 16:37
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...
Paula Span (pspan) Tue 14 Jul 09 17:03
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.
For Rosetti, wombats held a peculiar fascination (loris) Tue 14 Jul 09 17:13
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...
. (wickett) Tue 14 Jul 09 17:15
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.
. (wickett) Tue 14 Jul 09 17:17
<loris> and Paula slipt while I was writing.
Paula Span (pspan) Tue 14 Jul 09 22:21
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.
smuggling raisins into the Last Supper (carolw) Wed 15 Jul 09 01:30
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.
Lisa Harris (lrph) Wed 15 Jul 09 06:21
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).
Paula Span (pspan) Wed 15 Jul 09 08:59
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.
Lisa Harris (lrph) Thu 16 Jul 09 05:39
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?
Paula Span (pspan) Thu 16 Jul 09 08:19
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.
Paula Span (pspan) Thu 16 Jul 09 08:27
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.
For Rosetti, wombats held a peculiar fascination (loris) Thu 16 Jul 09 09:40
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?
Paula Span (pspan) Thu 16 Jul 09 14:04
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?
Lisa Harris (lrph) Thu 16 Jul 09 14:23
Are our expectations for affordable elder care realistic? I don't see how they are.
For Rosetti, wombats held a peculiar fascination (loris) Thu 16 Jul 09 14:59
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.
Amy Keyishian (superamyk) Thu 16 Jul 09 18:05
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?
For Rosetti, wombats held a peculiar fascination (loris) Thu 16 Jul 09 18:21
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.
Paula Span (pspan) Fri 17 Jul 09 05:31
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.
Paula Span (pspan) Fri 17 Jul 09 05:38
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.
Teneo??? (robertflink) Fri 17 Jul 09 06:39
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. ).
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