WHAT IF hallucinations are a disEase with reality due to Alzheimer’s, Lewy body, or other cause of dementia?
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.”
“Kids?”
“Yeah”
“Whose kids?”
“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.
“How many?”
“Oh, three to five.”
“Really?”
“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
Brenda,
I love this posting! I can’t tell you how gratifying it is to read something that affirms how I have begun to think about the “disease” of Alzheimer’s! I work in an assistend living/memory care community and just yesterday, a friend was telling me about a book she loved written by Andrew Solomon about the “disabilities” children are born with and how we designate them as “less than” as opposed to embracing the various divergent attributes. I said, what about our elders and their dementias? Isn’t it the same? SOOO much energy spent on “fighting” this disease and so much fear everyone holds in relation to this “horrible” disease happening to them. Lately, I have been doing my best to really look into the eyes of our residents and meet them right where they are. Personally, I think including quantum physics is right on!!!!
I am going to share your post with anyone open to another view. Again, thank you! I will also check out your website. Hey, do you ever speak in the Chicago area?!
WOW, I love your enthusiastic embracing of this post. THANK YOU for taking time to compose and post your comment. It’s truly heartening, Cyndy!
And Yes, I speak in Chicago whenever I am invited.
No invites in the near term, but that can change. 😉
While waiting to talk to a caregiver, I asked a participant (just a have a small talk with him while his caregiver was busy) ‘what is this season’ and he responded ‘I am not sure’ but he looked outside and it was sunny and the room was warm (with heating on), he responded that ‘it must be summer’. This incident happened in December and we were in Northern hemisphere. But what I like to point out that there was a reasoning in his thought process. He just did not give a response. Instead he thought it through and reached a conclusion based on evidences. So when we label the Alzheimer’s patients that their reasoning is gone, is that a correct labeling? or reasoning is there it is not for for this moment’s status.
How nice of you to share your experience of engagement with another.
As for whether or not a person with Alzheimer’s has the ability to reason–in some cases yes and in others, no, Renu. But we can never be certain unless we take time with the person.
Thank you for sharing.
Hello, as a person living with the symptoms of dementia I have mixed feeling about encouraging others to join me in my own unique and shaped by my cognitive disabilities world. I will always need others to depend on to keep me ground in today. I’m not anxious to encourage others to speed my journey into other worlds, not unless I, like you, can easily return to my own.
I pay professionals to look out for the best of my best interests. To maintain a respect for all my needs, and a committment to helping me see that they are all met. I don’t believe taking short cuts to a peaceful mind is the best path, when the path is filled with my pot holes than most paths. That is why I depend increasingly on others to help me fill the pot holes with reality. I don’t want to lapse into a discussion of alternate and coexisting worlds and time. I need to remain as best I can in my own world and time.
I realize this is asking professionals to take on some of the responsibility of/for which I now assume all of it. My chronic and increasing disability forces me to ask others to make these difficult choices. Don’t rub your reality in my face, don’t encourage me to feel bad about myself if I don’t get “you.” But please don’t give up on me, and jump in with both feet into my fictional world. I need you to gently point out when we disagree of what is what. I can play with you, but I don’t want you to live with me and further confuse me as to what is playing and what is living.
Richard
Richard, it is always eye-opening to hear (and in this case to read) your viewpoint. You help me stretch beyond my limited view of the dynamic tug of war between keeping a perspective on reality vs. not dragging you kicking and screaming into my reality.
As it were, I would try to grant my father an initial view of reality as I experienced it; yet, the times he insisted that his reality was what mattered and mine caused him discomfort, it served little purpose to stand my ground.
Fortunately, you seem to be higher functioning than he was at this time in his life.
Thank YOU again, Richard, for helping me explore more deeply the nuances that help me maintain patience with respect.
When we argue for “reality” with those with Alzheimer’s, who are we arguing for? Certainly not them. We need to get comfortable meeting them where they are now.
SOUND ADVICE, Shelly. 🙂
I agree. We need to enter their reality and suddenly all is well. I am going to post this article on our Society for the Arts in Dementia Care’s Facebook page:
http://www.facebook.com/TheSocietyForTheArtsInDementiaCare
Thanks,
Dalia
Thank YOU, Dr. Dalia for your comment and for sharing it on the Society’s FB page. We need to get more people thinking and talking about it in order to meet people with dementia in the world in which they live.
You’ve posed a lot to think about, Brenda. One thing that has always fascinated me about dementia is the degree to which the human brain strives to make sense of what it senses… sees, hears, smells, etc. We ALL create “stories” from what we experience. Who is to say whose story is the “right” one?
Yes, I agree with your fascination, Chris. We can never know for sure, can we?
Yesterday, I walked the halls with a gentleman who first caught my interest because he kept opening and closing doors. As I started listening to him, I learned that he was head of security. He asked my purpose so I fibbed and told him I had a level 6 security clearance with Lockheed. This impressed him so he started taking me to the top secret location for our meeting. At one point, a staff member came by with a cart and stop next to us. I said, “oh there’s the top secret device, should it be out here.” He told me it was OK but that we needed to watch it. This isn’t exactly what you are talking about Brenda but I had to share how strong this reality was to him and how fun it was for me to be part of it.
Exactly, Mike. Imagine how comfortable than gentleman felt as you accompanied him in his world. And a level 6 security… WOW! 😉