Sisters Enlist in Journey as Alzheimer's Hits Home
AREA-Alzheimer's disease affects an estimated 350,000 people in New Jersey and thousands more throughout the nation. The disease and its emotional impact represent one of the most heart-wrenching health issues confronting families in the Archdiocese of Newark.
To help raise money to combat this silent, debilitating illness, Pamela Muller Swartzberg, chairwoman of the archdiocesan Women' s Commission, joined hundreds of others on Oct. 28 at Van Saun Park, Paramus, for the Alzheimer's Association of Greater New Jersey's Memory Walk.
For Swartzberg, this day in the park was a personal journey. Not only was she walking for the thousands of families and caregivers affected by the disease; she was walking for her father.
Five years ago, Swartzberg's father, Jim Muller, was diagnosed with Alzheimer's disease. Along with her four sisters, she raised $35,000 for the Memory Walk, the largest amount raised for the local chapter of the association.
Her team, "Jim's Journey," consisted of her sisters and most of her father's 15 grandchildren. As a caregiver and daughter of someone suffering from the illness, she said the Alzheimer's Association was an invaluable resource.
"The Alzheimer's Association does caregiver advocacy and has tons of information. One of the keys for taking care of someone with Alzheimer's is to have resources on where to go and what is supposed to be happening due to the disease. It can be tough, so they have caregiver support groups and seminars. You can also see the different research successes on their Web site (www.alznj.org)," Swartzberg said.
The organization also offers funding to certain families battling the disease. "With Alzheimer's disease, you have no idea if you will need one year of care or 15 years of care. Alot of people don't have the finances and it can be intimidating. The Memory Walk is a positive way for families to feel like they are a positive force in the face of this destructive disease," Swartzberg explained.
Now 77-years-old, Muller is a man admired by his former employees and family. "My dad was, and still is, a person of great character. Now he is almost childlike in his ways so it is nice to have other people remember who he is as a person. It is easy to be practical and just concentrate on the dayto- day, but the walk celebrates who he is. His life is a journey of faith."
This was Swartzberg's first Memory Walk and she was surprised at the amount of support her team received, calling the amount of donations "mind-boggling."
She described the experience as healing and cathartic. "The Memory Walk is a way to fight back," she said. "It is very easy to see those suffering from Alzheimer's just barely get through each day. It is the 'devil' in the disease."
As a certified public accountant in the mutual fund industry, Muller was the head of a firm and also a deeply religious man. "All of the people under him were like his children," she recalled. We were raised in a very traditional home. The story of my dad is the story of his faith.
Muller served in the Korean War as a rescue helicopter pilot and hundreds of people are alive today because of his valor. He continues to be heroic in the face of this destructive illness.
"His 15 grandchildren don't even care that he has Alzheimer's disease. They just know him as 'grandpa.' They know when he needs help and have grown up with him. The children don't feel sorry for him. Adults, however, are more complicated," Swartzberg explained.
She admitted that there are times when she cannot help but look back on how her father used to be. "Sometimes when he's sleeping, he looks just like he did when he was younger and you can see that he is still in there. It makes me say: 'I miss my Dad.'"
The past few months have been difficult for Swartzberg's family. "In the beginning when he was diagnosed, there was not much to deal with. We just had to make adjustments. He went to the Christian Healthcare Center in Wyckoff. Although he had lost his independence, he was still very active. In the last eight months, there has been a decline," Swartzberg said.
One of the most important facets of Muller's life remains his faith. He still attends Mass at Most Blessed Sacrament Parish, Franklin Lakes. "One of the keys to my father's disposition is his faith. Father Renato Bautista visits his house almost every day. We are still bringing him to Mass and sometimes he will say he 'needs Mary,' which means he wants to pray the rosary."
Getting involved in the Memory Walk was somewhat of an ordeal, logistically. In addition to raising her own family and her duties with the Women's Commission, Swartzberg had to gather her four busy sisters and their children to meet at the same place and at the same time. A former attorney, Swartzberg and her sisters are in varied careers including a chiropractor, one in the financial industry, another in marketing and an opera singer.
"We all live in New Jersey, except for one in Texas," she said. "We all sent out letters asking people to donate money for our team. My sister in Texas raised $18,000."
Staunchly pro-life, Swartzberg can now relate to the "other end" of the issue. "I have internalized that pro-life means being in support of life from natural conception until natural death. I have grown into this issue and am extremely passionate about it. It is hard to see the dignity of someone who can't do anything for themselves. However, they still have dignity because God put it there."
The Alzheimer's Association of Greater New Jersey does not support embryonic stem-cell research and encourages research that is "ethically acceptable." The organization's stance on the issue is in line with Swartzberg's prolife beliefs.
Walking in support of her father, Swartzberg found strength and comfort in having her family by her side. "We were walking for my dad."