Waterfront Condos: More on the housing dilemma

Waterfront esplanade, expansive views from a sunny terrace, walk to the ballpark — what’s not to love about this housing choice?

Downsizing from a large, Victorian house filled to overflowing with the accumulations of two very active lives, the Langleys of San Francisco decamped, a few months ago, to a new, easy-care, sun-filled two-bedroom condo in the city’s happening-place Mission Bay neighborhood. They love the convenience, the mix of ages and cultures, the freedom from old-house maintenance worries and some unexpected bonuses like new friends living on houseboats from another era who are within conversation range of their 4th floor deck. “We (the new condo development) block the view they used to have all those years,” Judy Langley says, “but there are a lot of  trade-offs like getting the creek (which leads into San Francisco Bay) cleaned up, and the park over there…” For the newcomers, the young dog-walkers on the esplanade below, the middle-aged Chinese couple doing tai chi on the common lawn, it is an urban idyll.

Urban condos, even those without kayaks at the door and aged houseboats for neighbors, are an increasingly popular answer to the downsizing dilemma. But the dilemma remains huge and answers are seldom easy.

On the day the Langleys were hosting an Open House in their new digs, my sister was packing the last boxes from the high-ceilinged Boston condo that’s been her family’s home for decades. She and her husband are headed for a New York retirement community to which a physician daughter will also relocate from the west coast. Elsewhere this weekend a childhood friend was finalizing plans for a move from Northern Virginia to a coastal community where her husband will be able to live in a Memory Unit while she lives independently nearby.

These choices typify the variety of factors that go into contemporary downsizing decision-making: Is it affordable? Will I (or my parents) have the care that’s needed? Can life still be good (or even get better?)

And any of these families might also have considered co-housing. Yet another option for Boomers and Beyonders as well as for younger families and individuals, co-housing in some ways harkens back to a simpler, long-ago lifestyle and in other ways could only work in the 21st century. It was the topic of an OWL-sponsored panel discussion on Saturday, and will be tomorrow’s Boomers and Beyond topic.

Palliative Care: Rush Limbaugh vs the Grannies

The patient was in four-point restraint, which means his hands and feet were tied to the bed. He was shouting over and over, in Spanish, “Help me!” but no help came. Until Diane Meier happened upon the scene.

The back story, she learned, was that the man had end-stage cancer for which he had declined treatment. After he fell at home, his adult children had found him on the floor and called 911, landing him back in the hospital. There, among other interventions that were put into play, a feeding tube had been inserted through his nose. When he repeatedly pulled it out, his hands were tied. After he then pulled it out three times with his knees, his feet were tied. You could say these treatments were being performed over the patient’s not-quite-dead-body.

“Why,” Dr. Meier asked, “is it important to have the feeding tube?” The attending physicians answered, “Because if we don’t, he’ll die.”

It was at this point that Diane Meier, M.D., F.A.C.P., already honored for her work in geriatrics and for her personal and medical skills, became a crusader for palliative care. “A light bulb went off,” she told a group of physicians and other professionals in the field today in San Francisco. “I realized it was an educational problem, and thus a solvable problem.” She saw that the doctors and nurses were only doing as they had been taught, and the results were distressing also to many of them. “All I did was say ‘It’s all right to care about your patient.'”

Meier’s pioneering efforts to shift care of critically ill patients from aggressive, often futile treatment to comfort care focusing on the patient instead led to formation of the Center to Advance Palliative Care, which she currently serves as Director. They also resulted in a MacArthur Fellowship she was awarded in September, 2008.

“The MacArthur,” says the self-effacing physician, “was in recognition of the tens of thousands of people working in palliative care.” But those tens of thousands are not enough to have eliminated the tragedies of patients such as the unfortunate man cited above. Walk the halls of almost any hospital, nursing home or similar institution in the U.S. and you will hear the incessant “Help me!” cries of people being treated over their almost-dead bodies.

Helping them with comfort care rather than aggressive treatment, though, is referred to by the Rush Limbaughs of the world as “Killing off the grannies.” It is a handy sound bite, and it is tilting the balance against sanity in our lurch toward health reform. Unless Mr. Limbaugh can convince me I’d rather be 4-point-restrained with a tube inserted in my nose than gently treated with comfort care when I encounter my next critical illness, this particular grannie would appreciate his butting out of my rights. Palliative care should be a right.

It is, unfortunately, a campaign of the political right to keep palliative care out of health reform. They will prevail, Dr. Meier said, unless voices of sanity are raised, whether Democrat or Republican. She urged her audience, representative of a wide variety of compassionate groups, to help get the message out and get the calls, e-mails and letters in. Legislators behind the three bills working their way through Congress, she said, need to hear from the citizenry.

The citizenry is unquestionably in favor of comfort, and where palliative care can be understood it is welcomed. Hosting Dr. Meier’s informal talk were the California HealthCare Foundation, the California Coalition for Compassionate Care, Archstone Foundation and the University of California, San Francisco, four of many organizations committed to making palliative care understood, available and effective.

The question of whether they or Rush Limbaugh will prevail is as yet unanswered. Having Mr. Limbaugh forming our health policy, though, is almost as scary to this granny as 4-point restraint.

Health Reform 101 for Seniors

At an annual reunion gathering of California Senior Leaders today at the University of California, Berkeley, AARP California Executive Council member Bob Prath (himself a CA Senior Leader) made a valiant effort at outlining key segments of the proposed Health Reform bill which are of primary concern to over-50 generations.

Those segments include, in no specific order of significance or degree of complexity: guaranteed access to affordable coverage for Americans 50 to 64; closing the Medicare Part D coverage gap (known to insiders and more than a few others by now as the “doughnut hole”); approving generic versions of biologic drugs; preventing costly hospital readmissions by creating a follow-up care benefit in Medicare to help people transition to home; increasing funding for home-and-community-based services through Medicaid to help people stay in their homes and out of institutions; and improving programs that help low income Americans in Medicare afford needed drugs.

If that list of details seems daunting, it was not so to the Senior Leaders. Word had already circulated that Prath had read the entire 3,000+ pages of the bill, and no eye was going to glaze over. Covering it all, though, despite a carefully prepared power point presentation, was somewhat of a challenge in the after-lunch time whittled down to less than 30 minutes by the irrepressible tale-sharings of the reunion attendees.

Prath was asked, afterwards, for suggestions of where and how anyone over 50 might find concise and useful information, short of undertaking his own feat of studying 3000+ pages. Much, he says, can be learned through Health Action Now, and those worried about exorbitant drug bills can get some good, practical help from a nifty AARP brochure, “Don’t Dump Dollars into the Doughnut Hole.”

More enlightenment from the time-squeezed power point will appear in this space over the next few days.

Affordable Health Reform

It was actually spoken out loud on NewsHour Friday night: we could have a workable, affordable healthcare system if we would address the excessive costs that go into the last six months of life, particularly the last few days. The remark was immediately followed by the standard caveat: of course, no one is going to suggest doing this.

Good grief, why not? Everybody knows it, a few others have even said it out loud. Sure, it’s political suicide, but if someone were ever brave enough to fall on that particular sword there would be a lot of people around to pull out the sword, cleanse the wound and stand him or her back upright.

It could be done. If individual choice were encouraged and enabled. If physicians had to be honest about the quality of life (if any, usually for a few days or weeks) being bought with aggressive treatment at life’s end. If futile treatment were avoided. If protections were put in place for physicians and hospitals complying with the above, since fear of lawsuit is behind most of the mess. If all of us began to look at — and make clear — what extreme measures we would or would not want.

Big ifs. But the reward would be a workable, affordable system.

The Joys (and Angst) of Housing Choices

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What is it about the term “adult living” that seems so, well, one-foot-in-the-grave to me? Being surely one foot in the grave myself, if one chooses to look at actuarial tables which I do not, you’d think my opinionated mind might be pried slightly more open.

It’s a dilemma. Not whether one is polite and knowledgeable about adult living communities urban or suburban, but how to differentiate — and ultimately make choices among — the often bewildering assortment of housing communities and choices targeting everyone over 50 (and increasingly even below.)

I gave a talk at Rossmoor earlier today, a serene and bucolic adult living/retirement community about 25 miles and 40 degrees from San Francisco. This is no lie; it was 58 in the fog when I left home, 98 in the sun when I arrived. Rossmoor is full of recreational amenities: golf and tennis, choirs and bridge clubs and book groups. You cannot live there unless you are (or are formally attached to someone who is) 55 or older, and if you’re 18 or under you can’t hang around for more than 3 weeks. Rossmoor has its own mildly bewildering housing choices: congregate living, condos, co-ops and big houses on lush lots. It is ranked among the top such senior adult communities in the country and they are everywhere.

Add to these the growing varieties of aging-in-place groups (think Beacon Hill Village in Boston) and the truly bewildering assortment of assisted living facilities. The latter include simple rentals, detached cottages and elegant high rises; you can pay fixed or varying fees, or you can turn over your total estate (if it’s a large one) in return for a promise that you’ll be cared for in style throughout whatever infirmity or affliction arises and unto the grave.

Our friend Berta, widowed not many years ago, made the (possible) mistake of mentioning to her children that the responsibilities of maintaining her tidy, comfortable home were becoming onerous at times. This set off a frenzy of activity among her very active progeny, 3/4 of whom live in far-flung states. In addition to tackling the task of clearing out (“I had to grab a few things I wanted that were about to get thrown away…”) they came up with an assortment of possibilities for the mother whose comfort and well being they value above all else: condos and co-ops and a variety of retirement homes near their own homes, most at price tags more than daunting to someone who grew up in the Depression. Berta hopes to stay put. Most of us do, many of us can’t, and there’s the rub.

Health Literacy

Health Literacy, which is as much about common sense as about the three R’s, can nevertheless be a matter of life and death. Rebecca Sudore M.D. covered the issue in a recent talk to a group of healthcare professionals and volunteers in which she included video clips and verbal summaries of cases that bring chills: a woman who didn’t know she was having a hysterectomy until after the fact because she was afraid to ask questions, people who suffered or died simply because they could not read the details about medications or procedures. Health Literacy may be a field still in its infancy but it is a topic, as well as a separate professional discipline, for which the time has come.

Dr. Sudore, whose youthful energy and unassuming demeanor belie an impressive list of credentials in geriatric scholarship and practice, is passionate about the subject. Among the messages she shared, here are just a few:

Health Literacy is defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.” In other words, if you’re sick or wounded, it’s a pretty good idea to understand what should or should not be done to you – and literally millions of Americans do not.

Millions? Really? Yep, between 40 and 44 million of us are somewhere around a fourth-grade learning level, cannot read signs or medication bottles, poison warnings or the schedules of city buses. Try to imagine making it through the day, if you were in this group, with a bad cold or an infected finger. Another 50 million or so of us are hanging around 4th to 8th grade level, which means we have trouble with “executive functions” such as simple forms or reading a magazine. I hold an advance degree, and don’t even get me started on the difficulty-with-forms issue. If that form, though, means whether or not you agree to a hysterectomy it’s a lot more serious than exchanging data or filing your taxes. Healthcare workers, and sometimes family and friends, must pick up where education or language skills leave off.

Patients, Dr. Sudore explains, are critically hampered not only by lack of education and skills but by shame, fear and a host of other issues. Doctors, often part of the problem, are hampered by lack of time and health-literacy training, and other issues of their own.

Dr. Sudore and her fellow crusaders are out to change all that. They preach keeping messages simple, using plain language, an “Ask-Tell-Ask” method of communicating. Dr. Sudore was pleased, recently, to encounter a physician who caught himself hurriedly saying “Any questions?” to a patient and then corrected the phrase as she had told him, “What are your questions?”

It may be a way off, but Health Literacy is gaining ground.

Dementia, the last taboo

Dementia, the elephant in the conversational room, has begun to lift its trunk and trumpet around. Ask anyone over 60, or almost anyone whose parents are over 60, to list the Big Fears, and dementia will be up there at the top. But precisely because it defies solution, can’t be predicted and won’t go away, it has long been among the great taboos for meaningful public discourse.

Perhaps that’s beginning to change. There are a few answers emerging as alternatives to warehousing, or being warehoused, in an institution somewhere when Alzheimer’s or other dementia takes over. Some of them make very good sense. All of them require consideration with a cold, clear eye while still sane and healthy, and that’s when the elephant in the room needs to be shoved aside so conversation can happen.

At a recent meeting of advocates for improved care and expanded choice at the end of life, a small group gathered to discuss raising awareness for Compassion & Choices, one of the leading organizations addressing these issues today. The talk quickly turned to the subject of advance directives – everyone in the room had such documents in place – and from there to dementia.

“I suppose if my Alzheimer’s gets really bad I won’t care any more,” said one, “but I absolutely hate the idea that the images my friends and family will be left with won’t be images of who I am at all.” Said another, “To me, it’s the money. I just don’t want every last penny I want to leave my family going instead to some nursing home.” And a third added, “My husband has promised to slip me poison.”

Actually, there may be better solutions, even if they remain only partial solutions. Compassion & Choices now offers a “Dementia Provision” document that may be attached to one’s advance directives, stipulating that in the event he or she winds up with dementia the signer declines all measures that would prolong life. Author/ethicist Stanley Terman is taking this concept farther (devising stronger, more explicit instructions) for those wanting to avoid prolonged life after dementia strikes. While I don’t always agree fully with Dr. Terman (except for his inclusion of a story of mine in The Best Way to Say Goodbye; I don’t get royalties) I applaud his dogged search for answers, partial or absolute, to a problem that defies easy solution. The conversation is also being aided and abetted by some good new books, including John West’s The Last Goodnights, and everything starts with the conversation.

If the conversation continues, the elephant may leave the room.

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