Tough decisions, best intentions
Olivia Bartha cannot stifle her tears. Even though her head says she made the right decision, her heart still aches over having sent her elderly father to an assisted-living facility nearly two months ago. That was after a year of caring for him herself.
The sleepless nights spent preventing her 88-year-old father from wandering through the house in the dark, unlocking the door and wandering out into the street, along with the other symptoms that accompany dementia, took their toll.
That’s when Olivia realized her father’s condition required more than she was physically able to give.
“It was a tough call for all of us,” Olivia says, as her voice cracks and she sniffs to hold back the tears. “It was very emotional. Most of it was seeing this man that raised me and took care of me for 21 years deteriorating right in front of me.”
November is National Family Caregivers Month, which honors the selfless contributions people like Olivia make for their elderly relatives. Olivia’s is among the 13 percent of Latino households that provide care to an adult age 50 or older, according to statistics published by the College of Nursing and Health Innovation at Arizona State University.
And while they do it for the love, part of the job requires saving some of that devotion for themselves and recognizing when it’s just not enough anymore.
In their shoes
Before she moved her father into an assisted-living facility, Olivia felt like she had to take care of two homes: the one in which her parents lived and the one where she lives with her husband in Sun City.
Although she had help from her four brothers, the breaking point came when Olivia landed in the hospital from the stress of taking care of her father and looking after her elderly mother, who suffers from diabetes but remains strong.
Since the move, Olivia visits her father regularly, as do her mother and brothers. Despite what she had been through, Olivia is comforted by knowing that she did all that she could.
“He’s my father and it’s my obligation to take care of him. But I have peace about what I’m doing. You have to stay healthy yourself, but the love for your parents is so strong,” she says.
For the last two years, Theresa Mora has been a caregiver to her 85-year-old mother, who requires a walker and cane to get around, doesn’t hear very well and is experiencing the early stages of dementia.
Theresa moved her mother into her Tempe home after she had fallen down more than once. When she’s not caring for her mother (helping her pay bills, doing laundry and picking up after her), Theresa works part time at a hair salon. She gets help from her sister, with whom her mother stays occasionally.
“I’ve had to learn extreme patience. It is stressful, but I have support and I pray a lot. But sometimes you’re not as patient as you’d like to be,” Theresa says. “My sister and I talk a lot and we try to keep ourselves balanced, so we know if what each of us is seeing or feeling is just me or her, or if we’re seeing the same thing.”
Since taking her mother in, Theresa goes out a lot less. Her boyfriend who would like to see her more, but understands why that is not possible. Sometimes Theresa feels like she is at the end of her rope, especially when her mother’s condition instigates a conflict between them.
“I wish there was something more I can do. But you have to take [the conflicts] as they come and sometimes they are not pleasant,” she says.
Coping with the stress
Dealing with the stress of being a caregiver is a challenge. Most caregivers do not ask for help or are so selfless that they do not consider their own needs because they are so focused on taking care of their loved one.
However, periodically putting themselves first is the best thing caregivers can do, explains Dr. David Coon, professor and acting associate dean of Research and Ph.D. Programs for the College of Nursing and Health Innovation at ASU. Coon has collaborated in many research projects and hands-on studies regarding caregiving, particularly in Hispanic communities.
“Caregivers do not do a good job of taking care of themselves. But taking care of themselves is often the best gift they can give to a loved one. Also getting the support of loved ones keeps them providing in a way that’s balanced,” Coon says.
Coon suggests basic stress management techniques for caregivers and making an effort for personal time to help maintain physical and mental health. Quick and simple methods include deep breathing, getting regular sleep and exercise – or simply walking away from a tense situation. Reserving a time each day for an activity that boosts mood, such as a favorite TV program, a phone call to a friend or even a cup of coffee on the patio are other options. Finding a way to stay connected with others is also important.
Coon recalls two Latinas who were taking care of their husbands with Alzheimer’s disease and made a point to call each other after their favorite novella to discuss the show. They found the interaction therapeutic and knew that the woman on the other end of the line would understand if she had to quickly end the call.
Dancing date nights with her boyfriend and taking quick walks helps Theresa relieve stress. She and her sister also provide support for each other since they have similar experiences.
Olivia leans on her spiritual side. “I meditate on the Holy Spirit. That was what was really holding me up,” Olivia said.
Caregivers do not do a good job of taking care of themselves. But taking care of themselves is often the best gift they can give to a loved one.
– Dr. David Coon, ASU’s College of Nursing and Health Innovation
When a caregiver’s physical health is negatively affected, however, that is the time to consider getting more help from family or friends, or turning to a professional.
“To be a caregiver is so awesome, but you have to have a direction of where this is going,” Olivia advises. “From the beginning, if you can, get brothers or sisters involved, because it will overwhelm you.”
Theresa and her sister have discussed the next steps for their mother, whose condition is getting progressively worse. They talk about an assisted-living facility because the caregiving is becoming more than they can handle.
Although Theresa’s children are worried about her and the stress she is enduring, she says being Latina brings an additional cultural pressure to keep her mother at home with her.
“It’s not easy. Do we want to do it? No. But we realize she needs more care than we can give her. There are a lot of feelings of guilt,” Theresa says. “She will tell me that she doesn’t want to go to a care home … that it’s not supposed to be like that and that we should take care of her. That makes it triple hard.”
While there is a strong tradition of family in the Latino community, Coon says that there could be a conflict between an elder’s need for independence versus the need for care. Often the role of caregiving falls primarily to one person, with others providing some support. Women are usually the ones in that role.
“While they do it willingly, it comes with its own set of challenges,” Coon says. “There’s a sense of letting go of things you’ve normally done in your life. Sometimes we forget that, until we walk in the shoes of a family caregiver and see what their day is like.”
Being a giver
When considering whether to become a caregiver, Coon suggests families evaluate the impact the decision will have on everyone. Factors such as whether or not there are children living at home, any impact on income, the fact that people live a lot longer with frailty or chronic illness, the ability to keep mom or dad comfortable through their condition and end of life issues are among them.
“Families are very well-intentioned, but sometimes there is friction over the understanding of what needs to be done,” says Coon.
Theresa knows what kind of care is best for her mother, yet she struggles with what her mother and culture says she should do and what is best for her family.
“They tell me, ‘It’s not just about you. You have to do what’s best for the betterment of the whole family,’” she says.
Theresa advises anyone pondering taking care of their elderly parent to get a full assessment of his or her condition, including any conflict or hard feelings from the past.
“Find out where they’re at, what illnesses or issues they have, because those are going to resurface,” she says. “They don’t remember today, but they remember everything that happened yesterday.”
Coon says caregivers ultimately feel rewarded, even after their loved one has passed away. It can come in the form of creating a stronger bond with the person needing care or with a sibling, or the pride in serving as a role model or keeping someone safe.
“It’s amazing how they can still talk about what they’ve gained from this process,” Coon says.
In his mind, Olivia’s father often returns to his years as a young man before she was born. He tells her about playing basketball as if he is still a youth, and his experiences as a soldier in Vietnam.
And those are treasured moments that Olivia finds priceless.
“I have learned that in the midst of what he’s going through, he goes back to where he was and I just go along with him and follow his journey,” she says. “That has been such a blessing.”