When Mom & Dad go wandering: dementia on a relentless rise

“MISSING,” the sign reads. “Distinguished-looking elderly man. 6′ 1” slightly stooped. Gray hair. Wearing dark blue sweater and gray slacks. Name: George; does not always respond. Suffering from mild dementia. Wandered away from the Laurel Village shopping center area. Please call 415-xxx-xxxx with any information.”

The sad, 8″ x 10″ flyer has appeared (once the words were slightly different, but it was clearly the same George) at the bus stop near my home twice in recent months. I kept the number in my wallet for a while, hoping I might spot him because I walk the city myself. But the difference is that I have on a warm jacket — it’s way too cold in San Francisco, especially after dark, for only a sweater — and I know how to get home.  I have wanted to call the number and learn whether George got home, but it seems intrusive.

Last year for the first time, as reporter Kirk Johnson writes in The New York Times, people like George and a 60-year-old Virginia woman named Freda Machett accounted for more missing-person alerts than children and adolescents. They are confused and lost, and often are not found in time.

Ms. Machett, 60, suffers from a form of dementia that attacks the brain like Alzheimer’s disease and imposes on many of its victims a restless urge to head out the door. Their journeys, shrouded in a fog of confusion and fragmented memory, are often dangerous and not infrequently fatal. About 6 in 10 dementia victims will wander at least once, health care statistics show, and the numbers are growing worldwide, fueled primarily by Alzheimer’s disease, which has no cure and affects about half of all people over 85.
It started with five words — ‘I want to go home’ — even though this is her home,” said Ms. Machett’s husband, John, a retired engineer who now cares for his wife full time near Richmond. She has gone off dozens of times in the four years since receiving her diagnosis, three times requiring a police search. “It’s a cruel disease,” he said.
“You have to stop thinking logically, because the people you’re looking for are no longer capable of logic,” said Robert B. Schaefer, a retired F.B.I. agent who cared for his wife, Sarah, for 15 years at home through her journey into Alzheimer’s. He now leads two-day training sessions for the Virginia Department of Criminal Justice Services.

How to deal with dementia is the most bewildering of end-of-life issues, whether for oneself or for a family member. Most of us would choose almost any other scenario for our last months or years, but the choice is often not ours to make. We can file advance directives (mine includes a “Dementia Provision“) and express our wishes and do brain exercises; still, one in seven Americans, according to most fairly recent reports, now suffers from dementia and the numbers are on the rise.

Here’s one interesting perspective. My greatly beloved brother-in-law, who recently relocated with my sister to a retirement community, has Parkinson’s. Though his mobility and function are diminished, the disease has yet to affect his mind. Several weeks ago he told me he no longer fears dementia. “I see people more and more with varying stages of dementia,” he said, “and I believe you can be happy.”

But you can also wander off.

More Wander Off in Fog of Age – NYTimes.com.

Moving Mom & Dad: 8 months later

“The best thing? Well, there are only three rooms to look for my glasses in.” Nearing the end of her first year after a final move, my sister reports a whole bunch of pluses and only a couple of minuses in her housing choice.

Like millions of other older Americans, my sister Helen and her husband Clare faced the multitude of questions that come with aging in this country: where to live, how to stay active and independent, how to get necessary health care, how to finance it all. After a lifetime in academics and music, they had good friends at home and around the globe, but were beginning to feel isolated in their 4th floor Boston condominium because of limited mobility (Clare has Parkinson’s; they had long since sold the car…) and knew that changes had to be made.

First issue: Housing. Staying in their home was not a good option; though it had plenty of spare room, no family member was available to move in and help. They were far from needing (or being able to afford, for that matter) regular in-home help. Their children were scattered across four states, with families of their own.

The answer for Helen and Clare was Kendal at Ithaca, one of a growing number of retirement communities offering “lifetime” or “continuing community care” in almost every part of the U.S. and many other countries. They chose a two-bedroom, two-bath “cottage” within an easy walking distance of the main facility and its dining room (they have one meal a day there), fitness room, crafts room, library (a large and very well-stocked area where Clare spends most of his disposable time), swimming pool and meeting rooms (where Helen quickly found ways to be useful on multiple committees.) They made the move eight months ago (as reported on this page along with a running bunch of posts on senior housing choices then and since then); I visited again this weekend to see how things are working out. Pretty well. The winter wasn’t all that bad, though April in Ithaca seemed about as cold and ominous as June in San Francisco to this San Franciscan, and they have had no second thoughts.

The bad point: they miss their Boston friends. The good? Not having to worry about home care or upkeep, having a regular cleaning/household helper whom they greatly like, door-to-door transportation to cultural events at nearby Cornell University, Ithaca College and elsewhere, plenty of activities and new good friends, good food (“the desserts are desperately attractive,” Helen says) and health care (mostly right there on the premises.) On this last point, Clare lists one great attraction he sees: “They can’t throw me out.” The crowning bonus, for this fairly happily aging couple, is the proximity of their physician daughter and her husband, who relocated from the west coast to be near their parents, and who are in daily communication and assistance.

Kendal communities are not cheap. Nor are most of the others that offer independent living, assisted living and nursing care in assorted facilities, along the can’t-throw-you-out principle. Helen and Clare paid a hefty lump sum (being able to sell a home you’ve had for decades is the way most people swing this) and their monthly fee, which covers meals, transportation, doctors visits, drugs, etc, etc and etc, is also substantial. They are, though, a good choice for many. One college friend now in such a spot refers to her South Carolina retirement home as “our little corner of paradise;” another very close friend is delighted with her Virginia apartment in a community where her husband now lives in a “memory unit” a few steps away.

If you Google “retirement communities” or “continuing care communities” or similar phrases, literally hundreds of choices pop up. The managers of those facilities can spell out the costs and the benefits; for the pitfalls, it’s a good idea to talk with those who live there or whose loved ones are/have been there.

My demo couple in Ithaca are in the right spot.

Two rapes, two unhappy endings

Several generations ago, at a college in Northern Virginia, a young woman I’ll call Hannah woke up in a fraternity house bedroom very early one morning, a party still going on downstairs. She remembered, vaguely, going upstairs with a young man she barely knew. She couldn’t remember what she had had to drink, other than too much of it; she couldn’t remember why she had gone with him — she didn’t even find him particularly attractive — or much of anything else except that she had tried to fight him off and been raped.

Hannah managed to get downstairs and go home. She was filled with remorse and recrimination. She told no one, she said, until she shared the story with me three years later. It never occurred to her to cry foul, because in those days it was pretty much okay for young men to “sew wild oats” but too bad if an unwilling woman reaped the results. It was unacceptable for young women to complain, since it was either the woman’s responsibility to look after herself or the woman’s fault that things “got out of hand.” As soon as she found she was not pregnant, Hannah told me, she “just tried to put it out of mind.”

Some things have changed, some things are better, some things stay the same. Here’s a story by Amanda Hess in today’s Washington City Paper, forwarded to me by a friend. It’s about another “Hannah,” in another, but contemporary, college story that happened not far from the one above.

On Saturday, Dec. 9, 2006, Hannah* woke up in her Howard University dorm room with a piece of her life missing. Hannah, a 19-year-old sophomore, had unexplained pain in her rectum and hip. Her panty liner, which she had worn the night before, was missing. Vomit dotted her gloves and coat. Her friend Kerston lay beside her in the skinny dorm room bed. Kerston told Hannah not to shower—they had to go back to the hospital to secure a rape kit. That weekend, Hannah claims that she was provided the following excuses for why she could not receive a sexual assault medical forensic examination: She was drunk; she ate a sandwich; she was a liar; she didn’t know her attacker’s last name; the police had to authorize the exam; she was outside the hospital’s jurisdiction; she wasn’t reporting a real crime; she was blacked out; she changed her story; her case was already closed.

This is the story of the night Hannah was not officially raped. And so far, Hannah has not officially accused anyone of raping her. In the summer of 2007, she filed a lawsuit against the District of Columbia, Howard University Hospital, George Washington University Hospital, both universities, and several doctors she says denied or interfered with her medical care. She seeks damages for medical malpractice and negligence from the medical defendants and the D.C. police, which she says resulted in “the probable loss of the opportunity to see her assailant brought to justice.” Across the board, the defendants denied Hannah’s claims. The parties in the case, which has yet to go to trial, were not interviewed for this story; this account is reconstructed from sworn deposition testimony taken in Hannah’s suit.

The now-elderly Hannah never speaks of her experience. The contemporary Hannah is filled with anger and a sense of injustice. The contemporary story is complex and unlikely to come to any satisfactory conclusion… but then, these stories seldom do.

Test Case: You’re Not a Rape Victim Unless Police Say So – Washington City Paper.

Quality health care at lower cost? It could happen

It seems a no-brainer: reward the doctors and hospitals that give the best care, latch on to programs and ideas that offer quality over quantity. But innovation in health care, even when it proves out, has always taken a very long time to work into the system.

In a ‘Talk of the Town’ piece appearing in the latest New Yorker magazine, writer Atul Gawande offers a thoughtful look at some of the hurdles ahead for the newly-passed health bill. They are primarily political: conservatives — even if they’re talking less and less about repeal — will run on pieces they plan to strip out, states will fight the insurance exchanges (such as those that make health coverage near universal in Senator Scott Brown‘s Massachusetts.) And other battle lines will be drawn.

But one primary problem with the dysfunction we are hoping to fix, Gawande points out, is that the current system “pays for quantity of care rather than the value of it.” He illustrates this with a case that makes you cheer, and then feel a little hopeless:

Recently, clinicians at Children’s Hospital Boston adopted a more systematic approach for managing inner-city children who suffer severe asthma attacks, by introducing a bundle of preventive measures. Insurance would cover just one: prescribing an inhaler. The hospital agreed to pay for the rest, which included nurses who would visit parents after discharge and make sure that they had their child’s medicine, knew how to administer it, and had a follow-up appointment with a pediatrician; home inspections for mold and pests; and vacuum cleaners for families without one (which is cheaper than medication). After a year, the hospital readmission rate for these patients dropped by more than eighty per cent, and costs plunged. But an empty hospital bed is a revenue loss, and asthma is Children’s Hospital’s leading source of admissions. Under the current system, this sensible program could threaten to bankrupt it. So far, neither the government nor the insurance companies have figured out a solution.

There is in the new bill, though, a ray of hope:

The most interesting, under-discussed, and potentially revolutionary aspect of the law is that it doesn’t pretend to have the answers. Instead, through a new Center for Medicare and Medicaid Innovation, it offers to free communities and local health systems from existing payment rules, and let them experiment with ways to deliver better care at lower costs. In large part, it entrusts the task of devising cost-saving health-care innovation to communities like Boise and Boston and Buffalo, rather than to the drug and device companies and the public and private insurers that have failed to do so. This is the way costs will come down—or not.

Imagine innovation being rewarded, communities being encouraged to find ways to improve quality of care at lower cost. That’s real reform, and it could just happen.

The next attacks on health-care reform : The New Yorker.

When Mom & Dad stay home — and need care

Years ago when my grandmother was dying — a process that seemed to consume her for a very long time — her children took turns having their semi-invalid mother live with them for a period of months. Grandmother was not an easy patient. She spent most of her days talking about how everyone she loved was dead — which used to make me wonder where my sisters, my long-suffering mother and I stood with her. But Grandmother’s decline was before technology complicated such events, and pretty much all that was needed was to put a borrowed bed somewhere, try to keep her comfortable and entertained and call the doctor if she needed anything. Most of her six children had at least one at-home family member who could handle Grandmother’s care for a few months without straining the family budget or everyone’s patience and good humor.

Caring for aging family members today is not so simple. Few families have a stay-at-home member able to juggle regular routine with patient care, such  care now often calls for high-tech equipment and/or high-cost drugs and interventions, and doctors don’t make house calls every other night.

In an informative and enlightening ‘Encore’ feature, Wall Street Journal writer Anne Tergesen follows the adventures of several families wherein siblings have become caregivers to aging parents.

Family cohesiveness is a tall order at any time of life. But as parents grow frail, brothers and sisters often encounter new obstacles to togetherness—at precisely the time they most need to rely on one another. Sibling rivalry can emerge or intensify as adult children vie, one last time, for a parent’s love or financial support. And even as parents grow dependent on children, the desire to cling to old, familiar roles can create a dysfunctional mess.

Today, with the economy and household finances in disrepair, such strains are more pronounced. According to a recent report by the National Alliance for Caregiving and AARP, about 43.5 million Americans look after someone 50 or older, 28% more than in 2004. In comparison with 2004, a smaller percentage—41% versus 46%—are hiring help. And more—70% versus 59%—are reaching out to unpaid help, such as family and friends.

Experts say it’s crucial that families figure out ways to work together, to work through their differences, for the common goal of caring for a parent. If they don’t, their parents will suffer—and so will they.

“Family caregivers are the backbone of the long-term-care system in this country,” says Francine Russo, author of a new book about how siblings can cope with aging parents, “They’re Your Parents, Too!” Siblings who work together, she adds, can help preserve not just one another’s health and sanity but also a “last link to their first family.”

There is, fortunately, a lot of support for family caregivers, through sources listed above, the Family Caregiver Alliance and other local or national groups. There are also helpful tips, many of which are outlined in Tergesen’s article: use new technologies, seek help, be flexible, keep lists, and laugh a lot.

The latter was what saved my family from collapse during Grandmother’s stays in our home. Grandmother would today be easily identified as clinically, chronically, severely depressed. My sister Mimi and I devised a game, after the first few days of jockeying for position as the one not to have to spend the afternoon with Grandmother. Whoever came up with the most hilarious joke to tell and see if we could make her laugh, or the most bizarre question (“Did Uncle James really go to jail, like we’ve heard?”) to prompt a family story, would win. I don’t know if this technique has real merit but it worked for us. We laughed a great deal, and Grandmother got to tell a LOT of previously untold family stories. Some of them were even true.

Siblings Overcome Conflicts to Care for Aging Parents – WSJ.com.

Health reform: a start

Victory finally came, but only for those who were hanging onto the shreds of earlier wishes, and it wasn’t ever pretty. Watching C-SPAN on Sunday, in fact, was a little like watching grass grow, with every other blade sniping at the blade just around the corner. But at least that much is over.

Congress gave final approval on Sunday to legislation that would provide medical coverage to tens of millions of uninsured Americans and remake the nation’s health care system along the lines proposed by President Obama.

By a vote of 219 to 212, the House passed the bill after a day of tumultuous debate that echoed the epic struggle of the last year. The action sent the bill to President Obama, whose crusade for such legislation has been a hallmark of his presidency.

“This isn’t radical reform, but it is major reform,” Mr. Obama said after the vote. “This legislation will not fix everything that ails our health care system, but it moves us decisively in the right direction. This is what change looks like.”

Minutes after thebill was approved, the House passed a package of changes to it and sent it to the Senate. The Senate majority leader, Harry Reid of Nevada, has promised House Democrats that the Senate would quickly take up the reconciliation bill with the changes in it, and that he had secured the votes to pass it.

But while the Senate is bracing for a fierce floor fight over the reconciliation measure, the landscape was permanently altered by passage of the original Senate bill. Should the reconciliation bill, which cannot be filibustered, collapse for any reason, the core components of the Democrats’ health care overhaul would move forward. Indeed, Senate Republicans were quickly faced with a need to recalibrate their message from one aimed at stopping the legislation to one focused on winning back a sufficient number of seats in Congress to repeal it.

It was mean and divisive and ugly, and will surely get more so, but at least it’s a start. We can finally begin to reform what is a cruel and unworkable system. And maybe, just maybe, there will some day be access to health care for all. Does anyone remember when there was no Social Security or Medicare?

House Approves Health Overhaul, Sending Landmark Bill to Obama – NYTimes.com.