Aleida Barragan has cared for her father Benito for six years. Previously, she cared for her mother until her death from terminal cancer. "My dad first had cancers of different types: prostate, intestinal. Now, for about three years, he's had Alzheimer’s. His health declined a lot when my mother died. It is natural, they were together for 65 years," says Barragan, who is Cuban-born but has lived in the United States since 1970.
Thankfully her dad has not yet been aggressive or wandered away from home, symptoms that tend to come with Alzheimer's. But, still, she says caring for him is exhausting.
There are good days and bad, she says. "It's very hard because they do not understand you and then you get frustrated. You think they're still the person you know but they're not. Then the family suffers because they do not understand this. It is difficult and for me it has only been three years."
Barragan took a workshop to learn how to handle the stress that comes with her role as caregiver. "
I learned that you cannot repeat things over and over, you cannot argue, you must go with the flow. As much as you tell them not to do something, they will still do it. I have also learned to relax and go out on the balcony with my cup of coffee and ... a good book. Ten minutes later I'm better. "
Unable to hold hands
Alicia Weber cares for a sister who has Alzheimer’s. She previously spent 11 years taking care of her husband, who died from Alzheimer's. She is Venezuelan, but her husband Robert was a "gringo, gringo" who was in the Marine Corps.
She met him while she worked at a travel agency. "Once he sat in that chair, he never left," she recalls, laughing.
Her husband’s Alzheimer’s began at age 71, a process that accelerated after a head concussion resulting from a car accident, according to doctors.
"We always talked about when we’d get older and walk hand-in-hand, but unfortunately we ran out of time. Last night, I was looking at some photographs of him and he was a beautiful, tall man, a marine.
It is difficult, that a man like him has disappeared in this way. It is very sad," says Weber.
She now lives at her sister’s house, and helps her nieces with caregiving. Weber suffers from backaches and has osteoarthritis in her knee. Every night she sits at a small table in the television room to spoon feed her sister. "What can you tell someone who is starting to care for a sick family member?
One must have patience, love and respect for the caregiver," she says.
The recesses of the mind
Nereida Gonzalez cares for her husband, who was diagnosed with Parkinson's disease seven years ago and also has dementia. "His Parkinson's is not the kind where he is shaking, it is one of rigidity. Now he has lost 80 percent of his short-term memory, although his long-term memory is still here," says Gonzalez, who was born in Cuba and lives in Florida.
Gonzalez rarely sleeps at night, as her husband often wakes her because he is uncomfortable. "He needs to be turned right, left. I change his position or help him in other ways. I have to change the bed three times in the early morning because he wets the bed.” Two nights a week she sleeps in another room, which allows her to recover, while her son and his wife do the caregiving.
Gonzalez's husband, a PhD in veterinary medicine, worked in 2002 in a laboratory sacrificing animals, which, according to psychiatrists, may have hastened his dementia. "As explained, he suffered a clash between his conscious and subconscious, because after he had studied to save animals, he had to start killing them," she recalls.
After that, her husband began having delusions of persecution and is still scared when he sees a police officer. At one point, he thought the neighbors were undercover agents, and even tried to commit suicide. "But the worst is the Parkinson's," says Gonzalez. "Yesterday he could not walk because his legs were frozen. I feared he would fall."
Gonzalez has attended a support group every week for almost a year, which she says has helped her feel happier. "It’s not easy. Sometimes I shout, but in the group I have learned to release stress, breathe. My husband and I have been married for some 40 years and I sometimes see him and say 'this is not the man I married,' 'this is not the man whom I fell in love with,' 'this is not the man'… "
When caring for someone, she recommends learning to understand the disease. "Also know you are not alone," she adds.
When the patient leaves
Filiberto Rodriguez retired in 2000 from his job to take care of his wife, who had a heart condition. He was 62. "She was very active and fond of plants, but as the years passed she told me she could not do what she liked and was gradually beginning to feel more limited. I had to bathe her, had to prepare things for her. I had to learn to cook, clean. I was very lost," he says.
They frequently visited her two grandchildren, whose mother had severe diabetes. But five years ago, the two women -- mother and daughter -- died suddenly, three weeks apart, and since then he takes care of the grandchildren when his son works. "Hopefully that never happens to you, that the person by your side has gone and there is nothing you can do. Those were very sad days, but then we start again," he adds.
Rodriguez says he spends most of the little free time he has at church -- the same parish where he and his wife started going in 1976, after arriving from their native Cuba.
He is in good health, although he has pain in his legs, his knee, spine and shoulder. "We were married for 48 years. We met in the same town. I always liked her since childhood. I fell in love with her and, although I met other girls, she was always mine. I thought we would grow old together. Unfortunately it was her turn to go first."
The four respondents have been assisted by the nonprofit organization United Homecare in Miami, and Guadalupe Rodriguez, a social worker who facilitates a support group that meets every Friday from 10:00 a.m. to 12:00 p.m., aimed at those who care for a sick family member aged 60 or older.
"It's a group where they can share challenges and disappointments and give each other support. It is very common among caregivers to say 'I feel trapped.' Here we remind them that they are free and with that freedom have decided to take care of someone they love. We encourage and validate this work they do," said Rodriguez, who insists that
those caring for a family member must also take care of themselves and seek help. She adds: "Sometimes they say they do not know if they are doing well and you tell them, 'of course you are doing well. A half hour where you've run out of patience does not mean you're doing it wrong, it just means you're exhausted.'"