“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.
On my way to LA with pics for Mom to help her remember her SF kiddies … meantime, this was on a recent podcast from Radio Lab, called “Bus Stop”: (listen at http://blogs.wnyc.org/radiolab/2010/03/23/the-bus-stop/ )
“…There’s a common problem with Alzheimer’s and Dementia patients all over the world. They get disoriented. They wander off. Lost in their memories, they amble the world. But sometimes, in their wandering, they can end up too far from home, frightened, or hurt. So what are you supposed to do if your loved one–a parent, a grandparent–begins to wander in this way? Often times the only solution is to lock them up. Which just feels cruel. But what else are you supposed to do if you want to keep them safe?
Well, a nursing home in Düsseldorf, Germany, called the Benrath Senior Center, came up with a new idea. An idea so simple you almost think it couldn’t work. This week on the podcast producer Lulu Miller talks to Richard Neureither and Regine Hauch about what they’ve done in Düsseldorf.”
Readers should know that the Alzheimer’s Association operates a “Safe Return” program. Using identifying jewelry and an 800 number to a 24-hour crisis line, more than 8,000 elderly persons with memory loss have been safely returned home (see: http://www.alz.org/safetycenter/we_can_help_safety_medicalert_safereturn.asp). Further, individuals with memory loss are especially in need of advance directives. Consider documents with a specific dementia clause included (see: http://www.LifecareDirectives.com) or add a dementia clause to a standard advance directive. For those who can no longer complete a valid living will or other advance directive, consider completing a “Representative Advance Directive,” designed using state-by-state surrogate/proxy decision-making laws (see: http://www.lifecaredirectives.com/representative_ad.html). Far better for family decision-making to occur outside times of crisis than to put it off until confusion and distress compromise clear thinking.
Thanks for all that good information. I’d like to add once more the recommendation to check out http://www.compassionandchoices.org and the Dementia Provision form C&C makes available.
Thanks for those thoughts, Steve. I have only 2 suggestions from atop the end-of-life issues soapbox where I so often stand. (1)- Take care of your own eventual issues as well as you can: complete your advance directives etc and give copies to family members & close friends; (2) – When you’ve done what you can for your own elders (and it looks like your parents have cooperated by moving closer) just quit with the guilt. Dying happens. Probably isn’t the worst thing in the world. A focus on reasonable plans plus the spreading of any tiny joy available right now — a little blanket forgiveness doesn’t hurt either — seems to me far more sensible than Boomer Guilt (and I’m a Boomer parent.)
The wandering-off phenomenon as part of dementia sparks all sorts of dilemmas for the caregivers, needless to say, especially because it’s usually impossible to know whether the wanderer knows how to return home without assistance.
Until seven months ago, I lived nearly 1000 miles from my parents, feeling guilty every day that I was not geographically close to deal with wandering and other apparent end-of-life issues. Now my parents live four miles away in a nursing home of sorts–they moved to the city where I reside. Yet because I cannot be watching them every minute, I still feel some guilt. Only now the guilt is mixed with depression at seeing both my mother and my father declining gradually, and inexorably.
I realize that millions of others from my generation (I’m 61) are facing similar dilemmas. The misery-loves-company paradigm is not working for me, though.
Well Fran, a few hours after I read your
post and made my comment I find my-
self in the ER with mom. She fell in her
assisted living apartment and broke her
wrist. My iPhone is on Wi-Fi so I can talk.
Loma Linda U. Hosp is a teaching hospital and there
are a variety of people in the observation
room. In fact, there’s a guy who had a
cattle truck tip over on him on the I-10
in Redlands- it is on tv news. He’s ok. But
mom’s condition is another dagger into her
precarious independent life. I am watching
her- impatient, disgusted with herself, and
not sure how or why she is here. Tom Medlicott
Ohmygoodness. Bless your heart, and your mom’s fortitude. When I was doing old-fashioned newspaper columns and didn’t have ideas I used to hang out in the county hospital ER. There’s surely a story in the cattle truck tip-over survivor. And in your mom’s struggle, though I’m sure you’d rather not be part of that one. Good luck & good cheer.
Our local police department has a computerized call line that rings when an elderly person is missing. We have received calls at midnight – when you really think the worst has happened. My mother is in assisted living and has hospice because of her dementia. Her forte is “rallying” and appearing fairly normal to strangers or family who have not seen her in awhile. Her memory plays cruel tricks making her believe a bad experience from the past only just occurred. I don’t really want this to happen to me, her experience has been a large part of my life for the past ten years. Tom Medlicott
Thanks for sharing your experience, Tom; I know it has to be tough. My mother suffered stroke-induced dementia and it was pretty terrible for everyone (I HATED hearing caregivers talk baby-talk to my genteel, dignified mom.) But she was fortunate in having my dad care for her at home; he read her newspapers and Shakespeare and went to his own grave 20 years later swearing she was intensely interested. I plan to do everything in my power to avoid long-lasting dementia. If you’re similarly concerned, you might want to visit compassionandchoicesnca.org and download the dementia provision. I wish peace for you and your mother both.