They are no less refugees than are the displaced victims of a far-off war.
Our neighbors and friends with Alzheimer’s, and their overwhelmed caregivers, are almost invariably uprooted from their longtime homes by this relentless, merciless, terminal disease.
If they can be persuaded to go, that is. As dramatized in the quirky, even occasionally lighthearted movie Fred Won’t Move Out – which was screened last month at the Morris Museum of Art – sufferers and their beleaguered spouses can be mightily reluctant to accept a life change of such magnitude and finality.
And when it does come time to move – because the home has become too much of an obstacle course, or the burden on the caregiver too crushing – there are precious few places to go that are tailored to the condensing comfort zone of an Alzheimer’s patient.
The result can be a different kind of strain on caregivers, particularly when sons and daughters of Alzheimer’s victims aren’t on the same page or in the same region of the country. One caregiver we met at the Morris, we were distressed to learn, ended up having to go on high blood-pressure medicine from the travails of long-distance parent-juggling and sibling disagreement over what best to do for mom.
It shouldn’t be this way, and it doesn’t have to be.
We throw the word “war” around a lot, even in civil matters such as our “war on drugs” and “war on poverty.” But this is one war we definitely need to declare.
We have got to go to war against Alzheimer’s.
It has become difficult to find folks who haven’t already been touched by this despicable disease, and that will only be truer as time goes on: A new report in the journal Neurology predicts the number of Americans with Alzheimer’s could grow from more than 5 million today to 13.8 million in 2050. That’s nearly equivalent, notes Janice Lloyd in USA Today, to the entire population of Illinois.
America is in no way ready for that onslaught. We have neither the dedicated finances nor the health care infrastructure to properly attend to people with Alzheimer’s or their caregivers. At Augusta’s 2011 town hall on the subject, we were horrified to learn how many holes there are in the nation’s Alzheimer’s safety net. Caregivers can feel alone and helpless, and they report that the country’s health care system – amazingly – is far from fluently conversant in the disease’s impact on people. Even doctors must be educated at times.
Augusta is truly blessed to have an active and caring outpost of the
Georgia chapter of the national Alzheimer’s Association, which provides desperately needed advice, referrals, programs, coping skills, training and more.
That outreach clearly has to include the nation’s leaders, who are mercifully putting together a national strategy to combat Alzheimer’s. Indeed, on Wednesday Feb. 27, buses will ferry Augusta-area advocates – and that can include you – from Evans to Thomson and on to Atlanta to meet with legislators and rally at the Capitol. The trip is free and lunch is provided. For more information, contact Kathy Tuckey at (706) 860-4599 or firstname.lastname@example.org.
You probably know that Alzheimer’s progressively robs people of their memories and, tragically, even their recognition of their closest loved ones. But as devastating as that is, it also attacks their ability to function – and we’re left with the fact that Alzheimer’s is the nation’s sixth-leading cause of death.
At the movie screening at the Morris Museum – which partners with the Alzheimer’s Association to train docents for special tours and art outings for those with the disease – there was an Augusta-area caregiver whose name, coincidentally enough, is Fred. He admitted to the crowd that, while he knows the time has come to move himself and his wife from their home, like the character in the movie, “I don’t want to go either.”
When the time comes, though, our neighbors and friends shouldn’t feel like refugees who are alone in the world.
The fact is, increasingly, they are not alone.