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.

Moving Mom and Dad

The folks are getting on in years, the old house needs work, the Stuff is piling up everywhere — it’s time to look at moving. But the big question is, where to? Urban condo? Assisted living? Retirement village? LifeCare facility? Co-housing? Maybe even the dreaded Nursing home or dementia facility?

Making the decision to move into what is likely the last residence on this side of the hereafter can be daunting, sometimes devastating. Whether it involves oneself or one’s older family members, the Final Move often exhausts patience, finances and family resources. But good choices are out there, and good help (sometimes free, more often adding to the growing costs of this life event) can be found. In previous posts this space has offered glimpses of these choices and experiences: Helping Mom Die (10/16); Hanging in the ‘Hood (9/29); Justice Souter’s Retirement Housing (8/10.) What follows is a look into the LifeCare option. I should first insert a grateful nod to the source of this headline, a great book by Sarah Morse and Donna Quinn Robbins.

I have just returned from a visit with my sister Helen and her husband, newly installed in a spacious two-bedroom cottage at Kendal at Ithaca (NY), a Continuing Care Retirement Community. To do this necessitated cleaning out and selling (of course, the sale fell through when everything was on the moving vans, but last-minute calamity is to be expected) the far more spacious four-bedroom plus roof deck 1920s condominium in Boston they have called home for nearly 40 years. It was not pretty. Despite my earlier Boston visits to whittle down the Stuff factor and later urgings to connect Helen with the National Study Group on Chronic Disorganization, the job tested the limits of patience and strength of their four extraordinarily loving children.

Nonetheless the deed did get done, and Kendal at Ithaca is perfect for Helen and Clare, thanks to a confluence of happy circumstances: their physician daughter has relocated from Seattle to Ithaca; Manhattan is a comfortable Cornell bus trip away; desired features are in place. KAI includes a community center with a dining room in which their monthly fees entitle them to one meal per day, a fitness center, a large library, a van to take residents to doctors’ appointments etc. Best of all, says Clare, who has Parkinson’s, “they can’t throw me out.” The major appeal of LifeCare, or Continuing Care communities, for many seniors, is the inclusion of facilities for different levels of care which one may require in the future. (Worst of all, Clare adds, is the fact that “we have a lot of Parkinson’s, so I see myself 3 years down the road… 6 years down the road.”)

Continuing Care communities do not come cheap. But for seniors who have a chunk of change from a home sale or other source and a comfortable retirement income, they fortunately exist in growing numbers across the country.

For my own part, and I am certainly very senior, I was suffering anxieties and depression after one day. I need regular infusions of 30-somethings and 40-somethings for basic survival. Again, from what I’ve heard about co-housing — the perfect choice for many others as they age — that arrangement would feel crowded and disorderly. But there is the growing aging-in-place “Village” movement, which many would not choose but seems perfect to me.

Thank heaven for choices. It is seldom too early for Boomers, or Beyonders, to start considering them — and while you’re at it, you may want to clean out the attic.