As some of you know, I am working as a volunteer at the Mansion Medicaid Assisted Care Facility in my town and with a series of special books written to revive memory and to promote and celebrate creativity, spontaneity, and individuality.
I am working with a number of Mansion residents – Joan, Sylvie, Peggie, and others – using these books, which are written by a speech pathologist and a doctor who publish a series of books called reading2Connect. I have worked with therapy dogs and as a volunteer in hospice, dementia units ,and assisted care facilities for more than a decade.
The purpose of these books, say the authors, is to encourage the residents to read, and then read independently and together, and away from staff, doctors and volunteers. Hopefully, this new way of reading will take root and become a permanent feature of their lives.
Soon after the program begins, the residents, say the authors, will start to take control of the process, interacting with one another and reading to one another.
The books have been successful beyond my expectations over the last few weeks, I have not yet seen any evidence of independent or communal reading.
The residents are happy to read with me one on one, and to work to exercise and to strengthen their memory. The doctors say wait, it takes time.I should make it very clear that I am a layperson, a volunteer with no training in linguistics or gerontology.
Susan Ostrowski, one of the co-authors with (Dr. Peter Dixon) of the reading2connect series, and I, have entered into an online dialogue with one another about my reading experiences and where they might lead. I’m so impressed with Susan, if I can call her that, she is committed, open and responsive to my work. She watches every video I sent her and reads every blog post, and her input has been invaluable to me.
Friday, we had a fascinating exchange about the struggles people in elder care have with reading and also with memory, and what the obstacles are to reading for the elderly.
Everyone agrees that reading is one of the healthiest activities for people in elder care facilities, it connects them to one another, focuses and strengthens their intellect, and returns pride and dignity to their lives. But there often is little reading in these institutions, there is a lot of TV watching and communal activities like painting and puzzles and drawing. There is a great of passivity in the lives of people who have lost everything they love and become disconnected from their natural environments.
I wrote to Susan that I simply was not seeing signs of independent reading from the residents, and was doubtful that would happen.
They wanted to work with me, and were happy to perform skits with one another.
When I leave the books behind, as Susan has suggested, they are always right where I left them when they return. I suggested that many of the Mansion residents came from poor farm families and did not have rounded history of reading, they rarely had time.
Susan wrote me that I was not alone, many people working with their books ran into this problem. There are several things that make the elderly passive, she wrote.
“One is clinical. With almost every medical condition the residents deal with, the condition involves a neurological symptom calls “low initiation.” That means that regardless of the diagnosis someone may have that caused them to end up in assisted living, their ability to plan, start and execute an action is usually compromised to some degree. This is life, this is aging, this is inevitable.”
The second problem for mental activities is medication, especially anxiety or drugs for depression. They often have side effects that slow down initiative and mental acuity.
I have seen this myself, the residents are frequently and intensely medicated, and many of the medications they take have powerful side effects, including drowsiness, disorientation and sometimes, irritability. The medical establishment has become skilled at keeping people alive, pays no attention to quality of life.
But the third fact, she added, is especially sad. That is, most people in assisted living become passive and sometimes lack a wide range of interests because they have been institutionalized to some degree, and have acquired what doctors call “a learned helplessness.” Even in a place as warm and loving as the Mansion, she wrote, people become increasingly passive as their normal life and activities are left behind.
The elderly are confined in what essentially, ghettoes. Their world shrinks radically, they are fed, housed and given a narrow range of activities. They live and mostly see only other older people, the reality of the real world recedes outside of their rooms and dining halls.
Almost all major decisions are made for them by others, and there is no acceptable place to put their anger and frustration.
This makes people drift into the realm of learned helplessness.
We would all be as they are if were in their shoes, Susan said.
I know this to be true, I have seen it again and again. Life is circumscribed by resources and necessity, people enter assisted care because they are losing their ability to function independently in the outside world, and because they are losing their independence and individuality, they are become more and more helpless and dependent and less functional.
It is not natural for humans to be powerless, they either fight it or are discouraged by it.
Passivity is a powerful word when it comes to working with the elderly. I have been doing therapy and volunteer work for more than a decade, and I know what Susan says is true.
In order to live in assisted care, a restricted community that requires that people leave most, if not all, of what they loved about life behind, it is necessary to learn acceptance an accept a very different way of life.
The definition of passivity is, in fact, acceptance; acceptance of what happens without active resistance, or even necessarily response. That i the primary defense mechanism of the elderly, who have almost no power over they way they live their lives and few choices.
They are usually declining in health and mobility. Their bodies often determine what they can and cannot do. And there is little to stimulate or challenge them, the idea is to keep them safe and comfortable. And that is the bargain, safety and comfort in exchange for leaving their known world behind.
The less you have to do, the less you do, would be the way I would put it.
So when we introduce the kind of literature that reading2connects publishes, “we are often asking residents to step away from the norm,” say Susan. “The reading experiences we strive for celebrate creativity, spontaneity and individuality. In the day-to-day, most people in assisted living are rarely given the opportunity to exercise these characteristics, even in a place as supportive as the Mansion.”
Humans in general, do not do well in groups, she says, they tend to become quiet, or passive.
Susan said when she and her colleague Dr. Peter Dixon first offered their books to elder care facilities, they found the same thing I found: nothing much happened.
It takes training and patience to implement the program, and things that cost time and money are very hard to come by in Medicaid assisted care facilities, essentially facilities that primarily offer room, board and shelter. They receive little in way of reimbursements and simply do not have large budgets for staff or specialists.
“I hope you keep bringing the books to the Mansion,” Susan wrote at the end of her letter. “As the residents become more familiar with the books, and as they watch more confident residents begin to read, things will happen. Just when your think your friends will never move forward, they do!. Someone will reach out in a new way you haven’t seen before.”
I was fascinated by Susan’s letter, my mind is still spinning over it. There is so much I don’t know.
I wrote back and told her of course I will keep bringing the books back to the Mansion, they have been nothing but supportive of this work. I will keep reading to those who want to join this project, and find roles in skits and books for them to read with me and others.
I will leave some of these books behind in common rooms and even private rooms and with the staff so everyone can see and watch and listen.
I hope Susan is correct, she is certainly impressive and experienced, I am neither.
She and Dr. Diamond are committed to finding ways to help the elderly strengthen and in some ways, reclaim their voices and memory and learn how to read in new and carefully designed ways that benefit them in many ways.
That is a wonderful cause, and I would be honored and humbled to be a part of it. All I can do is the best I can for as long as I can. I have no idea where this goes, or where this ends. You are welcome to come along and find out with me.