MIAMI – She thought he was a little forgetful so Lucy Ross took her beloved husband Julius to get a memory test. It was June 2012 and the news she got was unexpected.
“He came back clear for cancer but the doctor told me he had Alzheimer’s disease,” Lucy recalled sadly. “Never in my dreams did I think my husband would have this. I had heard about this sickness. But sometimes you are in denial.”
Julius, 95, is a Holocaust survivor who lived through the horrors of the Krakow ghetto and escaped with his life through a mix of wit, good luck and miracles. But the memory-robbing ravages of Alzheimer’s are inescapable. To date, the disease is incurable.
“I survived the ghetto, I survived the concentration camp. What else can happen to me?” Julius quips with a charming smile, from his room at Miami Jewish Health. “I am sure I am not going to die young.”
A stranger might never know anything is amiss. But Lucy knows.
She placed him in a new empathy-based pilot program for Alzheimer’s residents at Miami Jewish Health, where he lives in a private room with round-the-clock care. The Hazel Cypen Tower Memory Care floor offers activities like music therapy, pet therapy, chair yoga and Zumba, brain games and movie time.
“They post an agenda and send emails for a whole month’s worth of activities,” Lucy said. “I know what’s going on.”
Empathy-based Care Model Offers Homelike Atmosphere
Before she sought help, Lucy cared for Julius herself. He was restless and didn’t sleep and woke up every two to three hours. He couldn’t concentrate on TV or a book and it sometimes took her an hour or more to take him to the bathroom or get him dressed.
“I was afraid to leave him home alone,” she said. “I was with him for 18 hours.”
She had help from a caregiver for six hours a day, but it wasn’t enough. She was exhausted and frightened all the time.
Today life is better for both of them. The Memory Support floor helps Lucy make the best of a challenging situation.
“From a caregiver perspective, she was the only person who was able to provide care and it’s just impossible to do,” said Chrystine Kopcsik, EmpathiCare program manager. “She can now spend quality time with him and not have to worry about all of the other safety concerns and provision of care. That makes her relationship with him much better.”
Miami Jewish Health plans to construct an “EmpathiCare Village” in 2020 that will create a living space with a secure perimeter for people with Alzheimer’s disease and other forms of cognitive impairment, giving them the freedom to live as normal a life as possible.
Currently, 23 people live on the Memory Support floor at Miami Jewish Health, where caregivers emulate the model of care that will be implemented at The S. Donald Sussman EmpathiCare Village.
Amazingly, it was Julius who steered Lucy to Miami Jewish Health for help. He read a newspaper article about a book titled “The Dementia Caregiver” by Marc E. Agronin, M.D., the psychiatrist at Miami Jewish Health and urged Lucy to contact him. She did.
Memory-Stealing Disease is Heart-Breaking
The effects of Alzheimer’s are insidious.
Julius is remarkably handsome, always stylishly dressed, and a mischievous joker. He emulates charm.
But he doesn’t remember events from one day to another, and Lucy isn’t sure if he still recognizes some of the regulars who visit him day to day. He repeats the same jokes over and over and always refers back to World War II, which he seems to recall most clearly.
“It is difficult but at the end of July, he will have been here nine months. It’s a good thing, I think. For him and for me, just to have peace and to know he is safe,” Lucy said. “And it is very, very nice. I tell him he is in a hotel.”
Although Alzheimer’s has blurred his view of reality, his recollection of some past events is vivid.
After the war, he wrote a chilling poem about a horrifying slaughter that occurred on May 14, 1944 in the in Plaszow concentration camp. Today he can still recite it word for word and does so frequently. He also likes to talk about how he met his first wife when they were teenagers cleaning the streets of Krakow.
The stories of how he survived the Holocaust will not be stolen away by Alzheimer’s.
Julius’s Holocaust experience was recorded in October 1995 as part of an international project by Steven Spielberg to preserve the life experiences of Holocaust survivors. Julius shared stories of his childhood, his youth and the atrocities he witnessed during the Holocaust on seven different tapes that are archived in the Shoah library.
“How I survived is unbelievable,” Julius said, shaking his head.
Added Lucy, “Julius would always say, ‘You have to be lucky in an unlucky situation.'”
Spielberg established the Shoah Foundation in 1994 to film and preserve the first-hand accounts, which became part of the University of Southern California in 2006.
The tapes also provide a rare glimpse of what this Alzheimer’s patient was like before his memory began to slip.
Round-the-Clock Care Provides Peace of Mind
These days, Lucy’s greatest comfort is knowing that her husband is safe and well-cared for.
“I can see he is declining. There is no time factor. Sometimes with a joke he can cover up.” Lucy admits. “But he is taken care of. He thinks he purchased his room and that he owns it.”
When Lucy stops by to visit Julius, he “takes” her to lunch. She pushes him in his wheelchair on long walks outside and they sit poolside and admire the sparkling water.
“It’s unfair. But this makes the relationship more than like when they were married rather than when she was the caregiver,” Kopcsik said, referring to the relief provided by the Memory Support floor. “This has created an opportunity for her to have a really enjoyable time with him rather than a stressful time worrying about safety and care issues.”
For information or to schedule a tour for the Hazel Cypen Tower Memory Support floor, call 305-2325433.