by Michael Scott O'Neal
Stroke victims are not the only people who have to deal with the after effects of this serious medical condition. The families of stroke victims suffer, too. Relationships within these families bend, break and transform into new roles as the stroke patient tries to return to a life they knew before.
Elvira O’Neal, 37, and her family, have first-hand knowledge of the stresses involved with stroke.
Elvira recently brought her parents to the United States from Ecuador. After her father, Jesús Zambrano, 67, started complaining of feeling dizzy and short of breath, Elvira and her family rushed him to St. Joseph’s Hospital Health Center in Syracuse. Jesús doesn’t understand English, so Elvira stayed with her father to translate during his five days in the hospital.
“I didn’t expect him to get this sick so fast,” Elvira said. “It’s been hard on the whole family.“ His first stroke was in 1999, at that time he had a heart attack and a couple days later he had a stroke,” Elvira said. It took her father about a year of rehabilitation to be able to walk and speak again. Elvira said she is hopeful that her father’s recovery from his second stroke in 2010 will be quicker since he is receiving better medical attention in the United States than he did in Ecuador.
“Unfortunately with strokes that involve the lower part of the brain likes his, there are serious problems with speech and swallowing,” said Dr. Steven P. Forman, a physician at the Syracuse Community Health Center.
Forman said Jesús suffered from a brain stem stroke, which also affected his ability to walk. Elvira said her father’s previous stroke caused identical symptoms.
Elvira said she wanted her parents to come live with her because her father had a history of medical problems and she thought the medical attention and health insurance in the United States would be beneficial for him.
Jesús had never been on a plane before or even seen snow. He’s from a small town where hot water is a scarce luxury. Elvira said his whole perception of life changed both culturally and medically.
“The medical treatment here is better. There is more knowledge and more advanced technology,” she said. Jesús underwent tests in the hospital after his stroke, which may not have been done in his hometown, that revealed an additional concern: clogged arteries in his neck.
Dr. James Mikesell, a neuropsychologist at St. Camillus Rehabilitation Center, said a family’s support is critical to a stroke patient’s recovery. He said many families react in different ways since they don’t always know how to adjust to new roles.
“I can’t say how he feels. I can say that I think he’s not happy,” Elvira said, regarding her father living in a different place. “First off, being in a house that’s not the one he lived in for many years, and maybe thinking he is a burden here. I also think he feels frustrated when he tries to talk and we don’t understand him, so sometimes he chooses not to even try.”
Elvira said her father is from a culture where the man is the head of the family and is used to making all the decisions. Now that he is handicapped, he has to listen to people telling him what to do. He especially doesn’t like listening to his wife or daughter boss him around, Elvira said.
“We say you need to get up, you need to move a little bit more or try to walk, but sometimes he just doesn’t care,” Elvira said.
She said she has also tried sending her daughter, Ashley, 4, into Jesús’ room to tell him to do things. This extra responsibility has affected Ashley.
“I don’t have the time to spend with her like I did before,” Elvira said of her young daughter.
Elvira’s mother, Vincenta Zambrano said she has also seen a change in Ashley.
“I’ve noticed my granddaughter isn’t being herself and is a bit shocked because of Jesús’ illness,” Zambrano, 61, said.
Because a stroke victim often needs around the clock hands-on care, the condition can drastically affect the person’s family. That new compensation for care can take a heavy toll.
Since the stroke, Elvira had to quit her part-time job cleaning houses to dedicate the majority of her time to take care of her father.
Doctors say Jesús’ recovery is going to be a long and complicated one.
“It is a balancing act of really trying to promote tissue recovery and the brain’s ability to find alternative pathways, but not fatigue them too much and burning them out,” Mikesell, said.
Mikesell said the families of stroke victims need to prioritize everyone’s needs. He said this “divide and conquer” approach is better and less stressful than moving forward without a plan. He compared it to triage in an emergency room.
“Everybody needs to be on the same page about what needs to be triaged and so sometimes there is even a need to step back and ask who is going to run point and how are we going to communicate these things,” Mikesell said.
“The most important thing right now is for my father to get better, it’s hard, and sometimes I just want to quit,” Elvira said.
Elvira takes her father to speech, physical and occupation therapy three times a week and has seen an improvement.
“He is doing well, and trying a lot better now,” Elvira said. The therapy sessions at the hospital have motivated him at home as well, she said.
Physical therapist Clint Stelmashuck, who works at Upstate University Medical Center, is happy with Jesús’ progress.
“Jesús’ walking has improved tremendously,” Stelmashuck said. “He has more control of his steps when he is walking. He is getting a little stronger and the more he does, the better he is going to get.”
Stelmashuck also said Jesús’ consistent family support will play a large role in his recovery.
“In the near future, I would like to see my father walking and talking again,” Elvira said.
When her father improves, Elvira said the rest of her family will also improve.
“This will make us happier.”