A Special Message To Share...
We were very pleasantly surprised to receive the
following letter and article from a family member after we ran a
week long series of programs for the Long Island State Veterans Home
in New York.
It's one of the strongest affirmations of our core beliefs…those
with dementia respond to people who communicate with respect, love
and kindness.
It works on the prairies...and it works in the Big
Apple.
Our thanks to the Zotto family (Michael featured above on left
with his son, Frank) for their follow through. The things
we teach are absolutely worthless...unless caregivers and family try
the ideas.
__________________________________________________________
December 23, 2006
Dear Mary & Rachel:
Below is an article I wrote and submitted to the NY Times.
Hope you like it.
Today, Tony and I, and two of Tony's sons (one of whom is a doctor)
visited Pop. Pop was so "in the moment" with us today; we just had
a terrific time. Nick (the doctor) was stunned at how well Pop
looked and behaved.
I'm starting to think our regular
visits are actually helping Pop remember a bit better. He was just
amazing this morning. When we left, he hugged and kissed us, and
told us he loved us, and asked that we visit him again real soon.
He had tears in his eyes; tears of happiness.
__________________________________________________________
Submitted to the NY Times in November 2006…
Pop &
the Two Strangers
(who got us in touch with
him!)
My father has been at the Long Island State Veterans Home on the campus of the State University of New York at Stony Brook for the past several years. He can't tell you what day it is, or what he had for breakfast, or who won the World Series, but he occasionally will recall some small detail from long ago; like about his service during WW II; he served honorably in the Pacific (Saipan), or the name of his first childhood pet, a dog named "Gooner." He will sometimes mention Franklin Delano Roosevelt, but he doesn't have a clue who George Bush is; perhaps there is a proverbial "silver lining," even with dementia?
Recently, strangely, he began asking my brother and me about his parents. "How's the Old Man?" he asks, referring to his father. Of course, we tell him that our grandfather, who died more than 25 years ago, is doing just fine.
From the moment Pop started being forgetful, I started distancing myself from him. I don't know where I got it from, and I'm not proud to admit it, but my ability to distance and withdraw myself from the unpleasantness of his dementia seemed to come all too easily. Of course, I felt guilty every time I visited him.
My wife would never understand why I wanted to leave after 5 minutes of his asking me if I'm still working, for about the 15th time. It was either leave, or deal with uncomfortable feelings; I'd go from sad to angry faster than you can say "D-Day." I used to think, "If he asks me that again, I'm going to have to either slap him, or jump off the roof." So, instead, I would dash away as fast as I could. I would tell myself that my father, as I knew him all my life, was long gone.
He slowly disappeared into an impenetrable fog of forgetfulness, and I couldn't find a way to get through to him. I felt I just didn't know him anymore. There was no meaningful communication going on. As more time passed, he could hardly remember my name. I'd rationalize that whatever interaction we were having was empty and superficial; and anyway, he'd forget it, and me, 5 seconds after I left, so what was the point.
Then, last September, the LISVH announced a program which promised to help people having difficulty communicating with their dementia afflicted family members. It suggested that getting through to dementia sufferers was possible. Needless to say, my interest peaked and I signed up. My wife and my brother came with me. What took place during the course of this 6 or 7 hour program changed our lives.
Two amazing women, Mary Sharp & Rachel Kail (The Edcon Group), from Kansas City, MO, an extraordinary mother and daughter team, ran the seminar. Their deep understanding, knowledge and insights in dealing with the profoundly forgetful victims of dementia were personal and professional. Educational credentials were, of course, present, but a 12 year period of caring for their Mother/Grandmother (who also suffered from dementia) informed and authenticated every word they spoke, and every lesson they taught.
The formal program was full of useful, eye-opening, practical information; and, the loving, gentle and often humorous way they shared their personal experiences with their Mom/Grandma made a very significant impact on everyone.
After the formal part of the program ended, Mary & Rachel joined us in another room, and met my father. The chemistry was instant. Pop is a gentle, warm and affectionate Old Italian. He always was, and, we learned still can be, a bit impish around attractive women, and after a very short time these two extraordinary women had my father laughing, tossing a "bean bag" around with utter delight, singing "...5 foot two, eyes are blue, but oh what those 5 feet can do." He even began flirting with them.
Well, my wife, brother and I were amazed. With enthusiasm, incredible energy, and wonderful sensitivity, Mary & Rachel not only joined us, they enveloped us. They treated us like family. They touched Pop, hugged him, spoke to him, got him to respond, and just plain demonstrated what they had told us about during the program.
We still can't believe how fast Pop reacted to them, and then how he almost miraculously started to focus, and stare at my brother and me. Slowly, a warm and loving recognition seemed to happen, and he started to interact with us like he hadn't done in years. Needless to say, we were just knocked out by all of this.
Before this day, we had been feeling just awful about what we thought was an impossible situation; a situation we were all mishandling by distancing and withdrawing from the father who had loved us, and cared for us, and had been there for us all of our lives. Until this moment, we truly thought he was long gone from us; and we couldn't bear to see him that way. We had a million excuses and rationalizations for not visiting him.
Our eyes and hearts were opened and touched by these two wonderful women, who only that morning were total strangers to us. They not only led us back to our Pop, they showed us that he was still in there behind that awful memory robbing condition; and, more importantly, they showed us that we can still reach him.
With a little crazy bean bag, they taught us how to engage and delight him, and make him laugh. They showed us how to talk to him in a new way; by simply pausing and waiting for him to organize, as best he can, his thoughts, we saw he was still able to respond, even be animated and affectionate with us. Some of his responses were precious for us. And although Pop still forgets everything that happens seconds later, we learned that he and we can still share special "in the moment" experiences together. For whatever we think about the misery of dementia, we have come to see that Pop, who is otherwise in good health, is in a blissful place, albeit a different, and far away place.
At the end of a recent visit, my brother and I were sitting across from Pop in a pleasantly sunny, un-nursing home-like room. We were sitting together quietly. Pop was staring at us, and smiling with that loving smile of his. As my brother and I got up to leave, he grabbed our hands, and looking at us straight in the eyes, he said, "Gee it is great to see you fellas."
Pop turned 93 years old on October 22nd, and no doubt he won't be with us for very much longer, but we have found ways to reach him, and to be with him in what will surely prove to be our last days with him. Thanks to Mary & Rachel, we discovered that our Pop is still with us. My brother and I see our father much more often now, and we feel connected to him once again. And we will continue this way for all of his remaining time on this earth. We are so thankful to these two wonderful "strangers" for this gift.
Frank Zotto
Son of Michael Zotto
New York, NY