Support groups offer forum for Laredo caregivers of Alzheimer's & Parkinson's Disease patients

 

By María Eugenia Guerra

 

Local support groups for the caregivers of two devastating illnesses, Alzheimer's and Parkinson's Disease, meet monthly to share common experiences, hope, grief, and ideas on better care and medical advances.

The Alzheimer's Support Group, which was organized by Melissa Guerra and Laura Perez, meets the first Monday of the month at 7 p.m. in Tower B of the Laredo Medical Center . Guerra, whose father José died in mid-May, formed the Alzheimer's Support Group earlier in the year with Perez, a social services counselor and caregiver for elderly patients and their families.

The Parkinson's Support Group was organized by Herlinda Nieto, whose husband Sergio, a former banker, was diagnosed five years ago with the debilitating disease. The Group meets the second Monday of each month at 7 p.m., also at the Laredo Medical Center .

“We knew so little about the disease when the diagnosis was made almost three years ago,” said Guerra. “We learned as the disease progressed, picking up information from web sites, from books, from programs on KLRN public television, and from the Alzheimer's Association in San Antonio . It took us a while to understand that the illness was ravaging my father in big and small steps that pretty much destroyed his beautiful mind, his kindness, and his memory of our life with him. It was in so many ways killing the rest of us, too. The more we learned, the better we were able to deal with how we were losing him,” she said.

“Near the end of my father's life, and at a time when we were tender from the inevitable loss of him, I understood that there was much to be gained by sharing our story with other caregivers and with hearing their stories. My Aunt Melida Coleman, who herself died of complications arising from Alzheimer's just a few weeks before my father died, urged me more than a year ago to establish a support group. She knew firsthand of the hardships of being a caregiver because her husband Joe Coleman had also died of complications from Alzheimer's,” said Guerra.

“As my father became more ill, and with the encouragement of Sister Rose Tresp and the Alzheimer's Association, Laura and I went ahead and established the group. We were trained by the Association,” she said.

“For me, the group is about healing. For others it is about accepting the loss in advance. It is also about forgiving yourself for lapses in patience or for being terribly human in the face of a set of circumstances that are trying. It is very important for the caregivers of Alzheimer's patients to be able to talk about feeling emotionally pressed or lost or sad. Caregivers often take such incredible care of the patient and sometimes do so at great cost to themselves,” said Guerra.

“We exchange information about the stages of Alzheimer's our loved ones are in, about medication, long term care insurance policies, physicians, and caregivers. We also talk about denial and about family members who do not participate in the care-giving, the grief, or the family healing,” said Guerra.

“Some of the stories we tell in the group are very similar. We are all witnesses to loss, and it hurts us. And some of us have distinctly different experiences. We have such a sense of helping each other. We hang hope on each other, the caregivers, because at this time there is no hope for recovery from Alzheimer's,” she said.

Though Alzheimer's and Parkinson's are similar in the devastating debilitation of the patient and in how families are ravaged as collateral damage, they are different, too.

“Our house is full of hope,” said Herlinda Nieto of her family's home life. “It is possible that a cure could be developed within the next decade. We try to look at the future in the positive,” said Nieto, an educator. “There is no true test for Parkinson's. The only diagnosis is the symptoms. A lot of other diseases mimic Parkinson's.”

What began as discomfort and a lack of strength in Sergio's left hand escalated quickly. He lost his balance and his arm atrophied a bit. “We started the medications just after he was diagnosed. It was not the case for us that Parkinson's would progress slowly, as it sometimes does in others. In just four years he was struggling to be functional at work and as of December of this last year, he was in a wheelchair,” said Nieto.

Sergio was assessed earlier this year by doctors at the UT Medical School in Galveston , who recommended deep brain stimulation surgery, which he underwent in San Antonio in April. The surgery, which involved drilling two small holes in Sergio's brain and implanting wires to stimulate brain cells that are no longer producing dopamine, yielded significant changes in Sergio's condition. The implant wires go to a battery pack on his chest.

“He is in a walker now, not a wheelchair. He is doing more for himself. He is more balanced, and his voice is stronger,” said Nieto. The deep brain stimulation surgery necessitates a weekly trip to San Antonio for adjustments.

Her husband, said Nieto, has “participated every step of the way in decisions regarding his diagnosis, treatment, surgery, and recovery. He is very much with us. He's brilliant and a very funny man. He runs our finances as he always has.”

Nieto said she and Sergio have made certain that the life they began together in 1970 continues as parents and grandparents. They are the parents of Linda Jessica Yelderman and Laura Yvette Aldaco.

She said that though financially Parkinson's has “packed a punch,” she and Sergio have managed well and have much to be thankful for. “It has slowed us down socially, but we are getting out a little more. We go to church every Sunday,” she said.

“The disease has made me be very resourceful. It has made me realize how much I truly love this man and my family. He has always taken care of us. This is no burden. It has made me very strong. It has made our friends strong. Despite the illness, Sergio has a full life. He is very motivated. He never gives up. He is a person to be admired, a man who says he is inspired because we do not give up on him,” said Nieto.

“This is our life right now, but it's not the way it's always going to be,” she said with an optimism tinged heavily with purpose and a small measure of defiance.

“Sergio goes to the support group meetings with us. We share what we know about Parkinson's Disease with others,” said Nieto of the monthly meeting with other Parkinson's caregivers. “I felt a calling to be available in this way. The Lord gives us gifts that we need to share.”

 

( For further information on the Alzheimer's Support Group meetings, call Melissa Guerra at 723-1707. For information on the Parkinson's Disease Support Group, call Herlinda Nieto at 723-8470. )