I often wondered this while caring for my father who lived with Alzheimer’s disease. And once my husband and I could no longer care for him in our home and we moved him into a nearby nursing home, I was profoundly struck by other residents also living in their own worlds. For some, it gave them great comfort. For others, it caused discomfort.
While visiting my father in the nursing home, we were joined by his roommate at the nurse’s station. My father turned to me and asked, “Did you see Ma and Pa? They’re supposed to be coming home anytime, now.”
His roommate reached in his shirt pocket, took out a pad of paper and pen, and asked my father for their names. “I’ll be sure to look for them.”
My grandfather was killed at the hands of the Turks when my father was only eight years old. He and his mother came to the U.S. when he was ten.
I asked my father, “When did you last see them?”
He looked at me strangely then answered, “This morning, as Pa left for work.”
“How about Ma?”
“She went shopping.”
WHAT IF my father was really living this experience with his parents?
Even though they died long ago, what if the middle-stage of Alzheimer’s afforded him the ability to co-exist with his parents from time to time?
Alzheimer’s is the leading cause of dementia and the number of people diagnosed has surged 25% over the last decade and a half. Today, it strikes 5.4 million Americans. Around the world, one person is diagnosed every four seconds.
Alzheimer’s disease causes far greater fear than death or even public speaking!
People with Alzheimer’s may not remember what you and I easily recall, such as if we ate dinner, how old we are, and where we are. Yet, they vividly remember instances from long ago as if they were happening right now.
During one of our visits to my father’s Wisconsin home after my mother died, my father asked David and me if we ran into “the kids playing.”
“Uh, I dunno…I think the kids from across the street.” He pointed to the second-story apartments across the alley behind the six-foot brick wall of our childhood home.
“Oh, three to five.”
“Yeah, they come over every day to play. I don’t know why, they like to come here, but they’re harmless.”
David and I searched from the attic down to basement search and found no one.
I realized then he was talking about the kids from our childhood, since no children have lived across the alley in a long time.
He was, as medical professionals would describe it, hallucinating.
Middle-stage dementia was causing him to see things that were not really there.
WHAT IF the kids were really there and my husband and I did not have the ability to see them?
After all, the children seemed to keep my father company and bring him comfort.
One day, I shared these experiences with several friends and colleagues. I wanted to learn what others thought.
Their reactions proved surprising.
“Brenda, how can you continue visiting the nursing home with those people. They are like the living dead.” “They’re like… Zombies.”
It hurt to hear their views. I knew my father’s time on earth was short. As long as blood coursed through his veins, he was alive—not the living dead. I was able to spend time with him. Even though he no longer knew who I was, I knew who he was and that was enough.
Fortunately, more people living with Alzheimer’s and other dementias are speaking about their experiences as are caregivers. With compassion, we’re raising greater awareness. I have not heard such comments, recently.
And then, I happened to talk with an older colleague–a product of the sixties counter-culture hippie generation.
She listened carefully, paused awhile, then asked a question, which opened my mind to a new way of thinking.
“WHAT IF your dad has the ability to see his parents and others on the other side?”
WHAT IF Alzheimer’s has gifted my father with peace of mind as he prepares for the end of his life?
The word dementia comes from the Latin words away from the mind. Historically, people were less able to understand what happens to a person with dementia. They were described as “mad” and “possessed by demons.”
Knowing what we know today, WHAT IF away from mind really means the ability to transcend time?
We do not really know.
Taking it a step further, WHAT IF time is not linear but exists in one space as multiple layers. Some who experience disEase while living with Alzheimer’s, are able to live in multi-dimensions? (Am I pushing this issue too far by involving quantum physics or quantum mechanics?)
What if? Can we really know for sure?
Each step forward in research leaves more questions about the complex of symptoms called “Alzheimer’s.”
WHAT IF a person with dementia can really transcend time to experience what the rest of us cannot see?
WHAT IF, instead of labeling these visions, “hallucinations”—a term that restricts and pushes one away–we grow to understand these as special abilities?
After all, if YOU truly saw someone who had died long ago, wouldn’t YOU need people to treat you with dignity, instead of brushing you off as hallucinating?
WHAT IF a person with Alzheimer’s was really feeling disEase with reality