I was surprised when I first entered the Lawrence Park Adult Day Services in Broomall. Because the center specializes in adults with Alzheimer’s disease and other forms of dementia, I expected a nursing-home arrangement with few activities and people staring off into space or talking to themselves.
But when I entered the large room, even though it was the end of the day, I saw that people were interacting with the staff, music was playing, and there was a feeling of liveliness.
I went to the center to tape some interviews with patients (who are called participants) and staff for a radio special on Alzheimer’s. As I looked around, I was struck by the sense of playfulness. I noticed greasepaint, easels, children’s toys and blocks, and many musical instruments.
I noticed the similarities between this atmosphere and the atmosphere in my grandson’s preschool. And then I heard laughter in the next room. At that moment, I was able to see similarities between these adults and those children better than differences.
Alzheimer’s affects five million people in the United States, and 15 million worldwide. The numbers are expected to quadruple as baby boomers age. Alzheimer’s usually begins with what appears to be memory loss, which affects almost half of all people as they age. But as Alzheimer’s progresses, patients become confused, disoriented, and eventually unable to speak or provide self-care.
Although there is no cure, nor reliable treatment, there is reason to be hopeful, according to Samuel Gandy, director of the Farber Institute for Neuroscience at Thomas Jefferson University. We are beginning to understand what is happening inside the brain of someone with Alzheimer’s.
“Because of genetic research, we have been able to identify the proteins that start the disease… which fold over on themselves and become plaque, which is distributed throughout the brain and poisons nerve cells,” Gandy said. Because of that better understanding, pharmaceutical companies are aggressively working to develop medications, some of which look promising.
“But,” Gandy cautioned, “unless we get a drug that works within the next couple of decades, there will be two kinds of people in this world: those with Alzheimer’s and those taking care of them.”
Like any other chronic illness, Alzheimer’s has a ripple effect. Typically with Alzheimer’s, insight is one of the first things to go. So the burden of care often falls on loved ones who meet initial resistance. The task of caring for someone with Alzheimer’s can be so stressful that loved ones are at increased risk of depression, isolation, and even something called caregiver’s dementia.
The first of my interviews at the center was with program assistant Steve Poltz, who wore a purple bandanna, horn-rims and a scruffy beard. Here’s how he described his job: “I come to a room with people whose minds are all in places other than this room because of the Alzheimer’s. My job is to go around the room and get them to agree to play with me today.”
One of his participants is “living in France during World War II,” Poltz said, and his job is to join the man there and keep him company rather than challenge his reality and try to bring him back to Broomall.
Another participant is a woman who used to run a program for cancer research. “Sometimes I am her chauffeur, sometimes I am her butler, and sometimes I am a professional colleague,” Poltz said. “But whatever I am, we are spending time together in her world.”
It’s hard to enter the world of someone who might be paranoid or terrified. But Poltz feels that to deny anyone his or her reality is not moral. Many developmental psychologists would agree.
And then I met Hannah. She appeared to be in her 80s and was a little plump. But what struck me as Poltz led her into the room was her cherubic smile, which never seemed to go away. When they sat down, Poltz said: “This is Hannah; she is one of our great singers.”
At first I was impressed by how clearly she spoke and how logical her answers appeared. She said she was aware of changes in her mind, as she was getting more forgetful. She explained that her daughter placed her here because she worked full-time and didn’t want Hannah home alone all day. I wondered if she was in the very early stages of Alzheimer’s or even if she had been misdiagnosed – until I met her daughter, Sissy, who arrived to take her mother home. She has been living with and caring for her mother for about 2 1/2 years.
When I told Sissy her mother sounded mentally clear, she replied: “That’s today. There are other days when she is confused and disoriented. Some days, questions are asked so many times I feel I am ready to explode.”
She began to cry as she described how guilty she feels when she runs out of patience. Through her tears, Sissy recalled how one day her mother kept belching, over and over. Finally, Sissy ran out of patience and said: “Will you please stop doing that!”
In that instant, Hannah, despite not understanding what she was doing wrong, said under her breath: “I wish I didn’t breathe any more. I can’t stand hurting my daughter.” I was struck by the fact that although Hannah’s mind was deteriorating, her love for her daughter remained intact.
I asked Hannah if she would sing something for us. With Poltz on the guitar, she sang the most beautiful version of “Let Me Call You Sweetheart” I have ever heard. By the time she was done, all of us were crying.
And that’s when I realized the difference between the Lawrence Park Adult Day Services and my grandson’s preschool. At his preschool, there are no tears of grief, no tears of helplessness or impotence. And no tears about what is in store for the future.
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