Archive for September, 2010

Moving Olympia

September 27, 2010

On a recent sun-kissed day, the coastal beach hotel hosted what might have been billed as just another pricey luncheon raising money for yet one more charity. But amidst thousands of bubbles in sparkling champagne and generous pours of crisp Chardonnay this event will be remembered as a star-studded event; not for a room filled with dignitaries or Hollywood stars but for the truly unsung hero: the caregiver.

Nationally, there are ten million unpaid caregivers to patients with Alzheimer’s disease. Men, women and young adults who manage their own lives while caring for a parent, spouse, or family member; wrestling with guilt, denial, exhaustion and solitude.

On this day, caregivers shared their stories and we were reminded of the heartbreak and pain that Alzheimer’s disease causes. We heard from a caregiver whose husband is struck by the disease. At what is supposed to be one of life’s happiest moments, the  youngest son is preparing to head off to college… only dad doesn’t know where this boy is going and barely knows who this handsome young man is. We learned about the son caring for his dad whose heart breaks knowing that “grandpa”  doesn’t understand that the beautiful young girls at his feet are his grandchildren. Or there is the high school boy who spent his entire summer giving full-time care to grandpa, with devotion and love the teen witnesses the strong man he worships quickly slipping away.

Then she walked into a banquet hall filled with over 400 women and didn’t miss a beat. In a sea of ladies wearing party dresses, she sauntered on stage wearing a tight black leather outfit. It’s impossible to believe she is approaching her 80th birthday. She is OLYMPIA. Most people know and recognize Olympia the actress; after today’s event many more would love her for her advocacy for Alzheimer’s disease.

Olympia Dukakis met up with the perplexing face of Alzheimer’s disease when her mother was diagnosed with it more than twenty years ago. She watched her mother change. Forgetfulness and humor would turn to bouts of anger, loss of appetite and periods of confusion. Like many caregivers, Olympia made the promise to never to put “ma” in a home. She could never allow her mother be one of those people who sit in a wheelchair  in the hallway of an institution.

But her mother’s safety became an issue, brother Apollo became consumed with self-denial, and soon Olympia made that journey with her mother to a facility. She spoke of the pain and guilt of brief visits where moments of light would peek through.

“Wheeling ma outside for fresh air would bring new life to her. She’d look at the sun and say ‘Look, the sun loves me.'” Toward the end of her mother’s life Ms. Dukakis witnessed a brief moment of clarity.

On this visit her mother spoke, ‘Oh, Olympia, I’ve been looking everywhere for you.’ “This was after almost two years of not knowing me at all, and we talked as honestly in that 20 minutes as I have talked to any human being. I think it was her goodbye, because two weeks after that she passed.”

With that Ms.Dukakis sweetly clasped her hand and imitated her mother’s last “bye bye bye bye.”

Alzheimer’s disease is like that.

The only thing worse than not reading a

September 17, 2010

The only thing worse than not reading a book in the last 90 days is not reading a book in the last 90 days and thinking that it doesn’t matter. Jim Rohn

Small Talk in a Sacred Space

September 14, 2010

Some things in the shul were foreign to the visitors: an Israeli flag, a transliterated program and the Hebrew writing on the wall  צדק צדק שאתה פארסא; other items offered comfort and familiarity like a magnificent ebony piano or the two floral arrangements at the bimah. But for today, in this sacred space, all were made to feel at home with the Eternal, Adonai.

The distinguished Rabbi Einstein, with his silver hair partially covered by a decorative kippah offered a greeting to the half filled temple. He reminded the friends (who happened to be men and women suffering from a form of memory loss, dementia or Alzheimer’s disease) and their caregivers that in this place, all are welcome.

Six or seven ladies in the front row chattered a bit. There eyes were fixed on the lovely young woman with blond hair. Martha comforted her friend Jane and said, “Oh I do hope she will play the piano today!” They giggled uncomfortably when the Rabbi introduced the woman as (the other) Rabbi Schorr who had spent 13 years studying piano, who admitted that she really was not an accompanist.  Soon their soft laughter turned to sweet smiles as the most melodic sounds flowed from the Rabbi’s mouth like sweet harvest wine. There was a bit of confusion as the guests tried to follow along with the Ma Tovu and the Esa Einai.  But soon the crowd was engaged with the rhythmic, repetitive sounds of “Lai, la lai lai” throughout the chorus.

Even the most frail of the elderly in the temple searched the heavens as the Rabbi read these comforting words: “I lift my eyes to the mountains, from where will my help come?”  Frozen in time, we waited for an answer from up above. The words of assurance came from Psalm 86,  the “Gates of Healing” for In my time of trouble I call You, for You will answer me.

All eyes turned to the ark as the Torah, covered in white, was raised high and carried throughout the congregation. “Oh,” Lily remarked joyfully, “these are the words of the Lord given just for me!”

How do you follow that remarkable moment? Fittingly, Rabbi Einstein  was able to stir something in each of us as he lifted the shofar to his lips and welcomed in the New Year!

And how will I remember this morning that was different than any other days? I will remember John who said to the Rabbi, “Can I pick out a yahlmulke? Can I take any color I want? Does it come with velcro?” I will remember that as I escorted Sally to the social hall for a marvelously prepared lunch by loving, generous temple volunteers, she said, “Oh, I cannot eat there. I have no money.” When she was assured that she was a guest for lunch, she said that “God makes lovely people in all kinds of religions!” I will remember that Geri and I had a lengthy conversation about mandarin orange waldorf jello. She blushed as she asked for three helpings and made me promise not to tell anyone jello always reminds her of kids in the kitchen during the depression. “What a luxury jello is!” I will remember that small talk can be a big deal to gentle souls who feel safe and loved in a very sacred space.