Autumn Storhaug (autumn) Fri 17 Jul 09 09:43
15 to 20 years ago, two loved ones and I had separate bad experiences with different doctors at the same HMO. Since then I've had to force myself to make appointments with doctors and I usually wait as long as possible even though I'm no longer with that HMO and now have good doctors. Because of this topic I realized this morning that I have to get over this reluctance. Otherwise, 10 or 15 or 20 years from now when I'm older and more set in my ways I may wait a dangerously long time before seeing a doctor. I'm going to call today to make an appointment I've been putting off, so thanks for this discussion! Paula, what other things could people do in their 50s, 60s, and early 70s that would help them when they're old? Forming or maintaining good eating and exercise habits, looking into long-term care insurance, getting a handle on retirement savings, staying in touch with friends are things I thought of. Are there other things?
For Rosetti, wombats held a peculiar fascination (loris) Fri 17 Jul 09 10:02
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?
smuggling raisins into the Last Supper (carolw) Fri 17 Jul 09 14:23
>>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.
Paula Span (pspan) Fri 17 Jul 09 16:15
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.
Paula Span (pspan) Fri 17 Jul 09 16:23
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.
Fawn Fitter (fsquared) Fri 17 Jul 09 16:36
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.
For Rosetti, wombats held a peculiar fascination (loris) Fri 17 Jul 09 17:35
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...
Paula Span (pspan) Fri 17 Jul 09 23:02
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.
For Rosetti, wombats held a peculiar fascination (loris) Sat 18 Jul 09 00:41
sounds like you got a very good deal, paula...
Lisa Harris (lrph) Sat 18 Jul 09 06:34
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*.
Paula Span (pspan) Sat 18 Jul 09 08:49
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.
Julie Sherman (julieswn) Sun 19 Jul 09 08:45
I have loved the discussion here, as well as the book. I have referred several people to it for whom "the time has come."
Autumn Storhaug (autumn) Sun 19 Jul 09 09:25
There's another issue to think of when we're putting paperwork in order: online IDs and passwords. I've told my sister to email the WELL's help desk if anything happens to me, so I won't just disappear from a conferencing system I've been a part of since 1991. But this Wall Street Journal article points out that "if you have an online savings account separate from your regular bank account and the statement notifications are only emailed, not mailed, that account may get overlooked when your finances are disbursed to beneficiaries." That's true, and although I've added beneficiaries to my investment accounts, no one knows where to find my passwords. The article also mentions social networking accounts. It's something to think about. http://online.wsj.com/article/SB124796142202862461.html
Lisa Harris (lrph) Sun 19 Jul 09 11:37
Paula, what part of this project was the most difficult for you? What was most rewarding?
Paula Span (pspan) Sun 19 Jul 09 14:42
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.
Lisa Harris (lrph) Tue 21 Jul 09 06:45
<scribbled by lrph Tue 21 Jul 09 06:46>
Lisa Harris (lrph) Tue 21 Jul 09 06:47
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.
Paula Span (pspan) Tue 21 Jul 09 09:34
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.
smuggling raisins into the Last Supper (carolw) Tue 21 Jul 09 15:34
Gail Williams (gail) Wed 22 Jul 09 13:29
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.
. (wickett) Wed 22 Jul 09 14:32
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.
Paula Span (pspan) Wed 22 Jul 09 14:51
Thanks, Elisabeth, I hope you're right. And thanks everyone, for joining the conversation.
smuggling raisins into the Last Supper (carolw) Wed 22 Jul 09 15:00
I will add my thanks, Paula, and I look forward to finishing the book.
Gail Williams (gail) Wed 22 Jul 09 16:48
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.
Paula Span (pspan) Wed 22 Jul 09 17:02
I'm in your debt too, Lisa.
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