Assisted living: When it's your turn to care for your parents
The decline of a parent is not just a physical and financial challenge, it's a spiritual one as well.
KATHY BINGHAM KNEW SHE HAD REACHED MIDLIFE when she stopped using her sick leave for her children and started using it to care for her mom. Her 83-year-old mother lives on a farm in a rural area about 80 miles from Houston. She still tends to her garden every day and loves to drive her riding mower. She bought a new one last year.
It's not her mother driving the lawn mower that worries Bingham as much as her mother still driving a car.
"That will probably be the next thing we address," she says. Since losing her husband six years ago, Bingham's mother has found a new doctor within 15 miles of her farm. She used to drive 40 miles. Bingham's brother owns the family farm now and helps manage the affairs of his mother and her aging sister, who lives in the same community.
Bingham's family issues, including the looming possibility of having to take her mother's car keys, are what fuels her passion for caregivers. As the director of the Office of Aging for the Archdiocese of Galveston-Houston, Bingham spends her days fielding calls and e-mails from children of aging parents. For almost 30 years her office has been helping parishes establish senior ministry programs. She's been successful in three quarters of the diocese's parishes, offering resources, support, training, conferences, and days of prayer.
"We know that if people socialize regularly they tend to have better coping skills and fewer health problems, and they are more compliant with doctors' orders," Bingham says.
If seniors attend regular events, people ask about them and miss them when they aren't there.
Bingham's concern for the elderly has moved her office beyond ministry and into advocacy for older adults. She has organized Senior Senates to help parishes and seniors stay connected, and she speaks up to community and local government agencies on behalf of senior citizens. Bingham spent a good part of this past spring helping seniors navigate a website about the new Medicare drug programs.
"How you treat the most frail is an indicator of how society is going," said Bingham. "These are people who contribute significant amounts of time to their parishes and their parish communities."
The elderly in the living room
Families usually wait way too long to make decisions about their aging parents, says Ethel Sharp of Aging Matters, a St. Petersburg, Florida nonprofit corporation that helps seniors stay independent as long as possible and offers caregivers support and advice on when older adults should consider assisted living.
"The biggest thing I try to do is ward off crisis," says Sharp. "When people are in such a panic, they call all the wrong shots. They think everyone needs to go in a nursing home now, and they don't know their options."
As a teenager in New Rochelle, New York, Sharp watched her mother die of brain cancer. In the days before hospice care, her parents' bedroom was turned into a hospital ward, and the family nursed her mother to the end.
"It was spectacular," says Sharp, describing her mother's grace-filled death and the support of her family. She remembers the prayer vigils at her mother's bedside and the peace that prevailed throughout her illness.
A contributor to the senior section of the St. Petersburg Times, Sharp has worked in aging issues for decades, including for her diocese in Florida. She draws on volumes of experience in her own life. In addition to watching her mother die, she also cared for her mother-in-law until her death.
While her children were still in grade school, Sharp's mother-in-law suffered a paralyzing stroke in New Jersey. Family members up north decided to put her in a nursing home, but Sharp, recalling the peaceful decline of her own mother, insisted she move in with her family instead.
"That's when I really began to understand the nitty grittys and the emotions of caregiving," says Sharp. "My mother-in-law came here resentful that she was even alive with that condition. The more I did, the more she demanded."
Sharp says she never felt so alone. Her friends didn't understand what she was going through. They weren't having to bathe their mothers-in-law or take them to the toilet.
"We talk openly about our babies and our kids. We share birthing stories. But we rarely discuss our aging parents. It's still a disgrace that your perfect mother or father is now unable to speak right or walk right," said Sharp. "In our minds, our parents were the ones with all the answers. The child within us still calls out to mom and dad. It's dreadful to realize that these people who represent our security and togetherness are now incapable."
Sharp, who has counseled thousands of aging adults and their caregivers, believes that's the reason so many children distance themselves from aging parents or let another sibling handle the responsibilities. In many cases she is the one who ends up caring for the seniors referred to her agency.
Even the closest family relationships can be strained by the needs of an aging parent.
"It's out of sight, out of mind," says Carol Marquardt, whose mother, Jean Southmayd, died in a Clearwater, Florida nursing home in January. "When my sisters and brothers weren't here, they could go about their lives and not think about it. But because I was here, my mother's needs were present to me all the time."
Marquardt, an author and the founder of the Mantle of Mary Catholic prayer groups, was balancing her ministry, the needs of her family, including five grandchildren and a pregnant daughter-in-law, and daily visits to her mother.
Marquardt wanted to be with her mother when she died. A couple of years ago, she was present when her mother-in-law died in the Alzheimer's ward of a nearby facility.
Both her mother and mother-in-law had strong personalities. They fought their illnesses and the loss of their independence. For her mother-in-law, a feisty woman who attended daily Mass and wrote letters to the editor whenever she disagreed with editorials, the toughest task was taking away her driver's license and car. Her children were forced to take action when local police found her after she got lost on her way home from church. She was furious and refused to speak to her family.
Marquardt's own mother had a much harder time giving up her home than her car. Southmayd moved from a single-family home to a condominium after her husband died. Later she was diagnosed with Parkinson's disease and began to lose her balance. When she fell and broke her shoulder, doctors suggested she move to an assisted-living facility.
"It reminded me a lot of a child moving to a new town and having to go to a new junior high school," says Marquardt. "She worried about how she looked and what people would say. I started praying for her to make friends."
When her mother's condition worsened, she was moved to a facility with round-the-clock care. When the Parkinson's affected her mother's ability to eat, Marquardt went to the nursing home every night to try to feed her.
Marquardt's five siblings, including three who lived out of state, would visit regularly. But she and her youngest sister bore the brunt of their mother's illness.
"I didn't want her to die alone, and I knew that for the rest of my life I could feel good that I was there," she says. "It was a privilege for me because she gave me life and raised me. She was helpless, and I felt like I was living the gospel."
A family affair
Mary Jo Murphy lost her mother, Esther O'Brien, to vascular dementia on Palm Sunday of this year. One of seven children, Murphy and her siblings began caring for her mother while their father, Jack, was dying. Her sister, Rita Rewiski of north Florida, describes the initial realization that her father's health was failing: The strong man who had a penchant for details started becoming too weak to handle daily activities.
10 guidelines for caregivers
1. Know that you cannot honor elders by dishonoring yourself.
2. Understand the real needs of elders.
3. Develop a balanced, quality relationship with elders, not a quantity relationship.
4. Recognize that there are very few "right" ways or "wrong" ways in caring for elders.
5. Establish boundaries with elders so you can love and honor them as completely as possible.
6. Recognize that simple and direct communication is your strongest caregiving tool.
7. Recognize that caregiving offers many opportunities for profound personal insight.
8. Learn that letting go is your most valuable ally.
9. Help elders tell their life story.
10. Realize that you are never alone in your caregiving; God is always there with you.
"Later Daddy's ability to drive was a problem," she says. After a family discussion and a lot of prayer, Rewiski and her siblings asked her father not to drive until he finished a month of exercise classes to improve his strength and mobility.
"He was never strong enough to attend his classes, so the driving issue just faded away," she says.
Other issues were more problematic. When their mother lost interest in cooking, the family arranged for Meals-on-Wheels to deliver food. That lasted a year, until their mother called and canceled the service.
"This is when the real difficulty began. They had slowly become more and more private, not wanting outsiders in the house. They didn't want the cleaning lady anymore either. Their personal hygiene changed?they didn't see the need for daily bathing anymore," says Rewiski.
The O'Brien children ultimately gave their parents the choice of hiring help or moving to an assisted-living facility. They reluctantly agreed to hire six caregivers who remained close to the parents and family until Jack O'Brien's death in 2004.
"Watching a parent age, lose abilities, and become completely dependent on others for basic needs is very difficult. In a manner of speaking, I grieved their ultimate loss a little bit at a time with each physical or mental loss," says Rewiski.
By the time her husband died, Esther O'Brien's dementia was obvious. Her children sold her home and moved her to an assisted-living center next door to her son's parish. She stayed there for a year until it was clear her illness had progressed.
At the end of her mother's life, Murphy visited the Clearwater nursing home regularly to help feed her. She recalled one morning when she was feeding her mother breakfast.
"She lost so much weight. I just kept encouraging her to eat. At one point, she stopped opening her mouth for me, looked up and said, 'Who's the mother, you or me?' I assured her that she was still the mother and that I loved her and was trying to encourage her to eat so she would stay well." To Murphy, that exchange epitomized the journey with her mother.
The O'Briens were a faith-filled couple who prayed the rosary every day of their 65-year marriage. Murphy and her own children recited the same prayers at her mother's deathbed. Father O'Brien anointed his mother on Palm Sunday morning and left the nursing home to celebrate Mass at his parish. When the choir sang the words, "Were you there when they crucified my Lord?" O'Brien says he knew that was the moment of his mother's death. At the same moment, Murphy, her husband, son, and sister prayed from a book of Catholic blessings.
"I have new eyes, new understanding, a new way of loving because of experiencing the gradual death of my dear father and mother," says Murphy. "Through all of this I have seen how love has deeply increased in all of us in caring for our mother and father, so I know it is true what Pope John Paul II said about suffering?that it 'is in the world in order to release love.'"
Caring for an aging parent is "humility personified," says Ethel Sharp. "If you don't have spirituality in all this, I don't have an answer for you."
Dr. Richard P. Johnson, founder of the St. Louis-based Catholics 55 Plus, says he was working in an ambulatory care center at a local hospital in 1981 when he started seeing scores of middle-aged patients with back pain, intestinal pain, insomnia, neck pain, and other stress-related illnesses. Each patient, he discovered, was caring for an elderly person.
"Back then there wasn't a whole lot out there," says Johnson. He began conducting seminars and classes and writing books to help caregivers. In 1987 he published Caring for Your Aging Parents (Concordia).
Many of the needs of aging parents "revolve around their reaction to diminishment?physical and emotional diminishment," he says. Anger is one of what he refers to as the five chronic problem personalities that often accompany aging, along with depression, anxiety, delusion, and dependency.
Seniors with an active spiritual life age differently, he says. Johnson once interviewed an 83-year-old woman for a documentary. She described being at Mass with her adult son and asking him why there were so many old people in the congregation. He said, "What do you think you are?"
"I didn't know I was old," she said. "I thought I was all right."
These days, somehow, aging isn't all right, says Johnson. His research shows spirituality can make aging healthier. He calls faith the "most powerful non-pharmacological relationship builder."
"For an adult child or the extended family to take this walk with their parents is a phenomenal faith experience in itself."
But that doesn't always make the cross lighter. "It's the emotional issues that I've found create the most strain on caregivers. The more conflicted the family historically, the more conflicted the relationship is going to be in the later years," says Johnson.
Families with a history of infighting often can't agree on the care of their aging members. Sometimes they can't even agree that a parent needs care. One topic covered in his seminars is sibling rivalry.
"You never had sibling rivalry until mom gets to be 83," he says. "We always call the out-of-town son or daughter 'the turkey from Toledo'—they fly in, they make a mess, and they fly away. They want to help, but they are driven by emotion."
Often, he says, an aging parent will rise to the occasion when an out-of-town family member arrives. Mom looks good and the sibling can't figure out what all the fuss is about. Add money issues to the emotional stress and the situation becomes nothing short of bizarre.
"The best antidote to [the stress of] caregiving is being in a support group," says Johnson. "I believe every Catholic parish needs a support group for caregivers of aging parents. Caregiving can be a drudgery, or it can be a spiritual exercise.
"We are called by the fourth commandment to honor our aging parent, but Jesus never asks us to dishonor ourselves in honoring our parents. In the fourth commandment, honor means not abandoning them."
Father Jean Robitaille, a Missionary of Africa who had to return home from the mission field in 1987 to care for his aging parents, says faith makes the journey possible. "Spiritual people can deal with this more easily because they allow Jesus to guide them in life. They see Jesus as the one in need beside them, and it becomes an act of love."
He compared it to getting up in the middle of the night to feed a baby. "If you are a person who sees that in doing this you are giving God glory and growing closer to the Lord, you can do it."
Robitaille, who also cares for the aging members of his order at their St. Petersburg retirement home, is an only child. He didn't have sibling issues, but he has had to care for his parents alone.
Before his father, Raoul, died of congestive heart failure in 2000, Robitaille visited twice daily to change his catheter, bathe, and feed him. He purchased a mobile home near his parents in order to be close by. Because his father's mind was intact and because his mother was there to keep him company, Robitaille's 82-year-old dad was able to remain at home until his death. His mother, however, is now in a nursing home.
"I was feeling uncomfortable leaving her alone," says Robitaille. Without her husband's companionship, Germaine Robitaille was declining. When she fell and broke her hip, her son and her doctors determined she needed more care and found an assisted living center. He brought her own chair and photographs to smooth the transition. After another fall, she was moved to a nursing home.
"Being a caregiver means putting yourself in their place," says Robitaille. "The fact is, in a nursing home there are people around."
Robitaille, 61, visits his mother every day. Even if it's just for a few minutes before bedtime, she knows he is there.
"Sometimes people will keep their parents home for selfish reasons. That could mean they receive minimal care and are lonely," he says.
Caregivers, in turn, shouldn't feel obligated to put up with physical, verbal, or emotional abuse from their aging parents. When a parent becomes aggressive or violent, Richard Johnson believes it could be time to consider institutional care. Another indicator is when a parent becomes incontinent.
Support groups can help caregivers with the guilt that often surrounds some of the decisions facing them. Johnson offers newsletters, courses, and his books through the Johnson Institute: www.senioradultministry.com.
Dr. Tom Robison, a Catholic general practitioner, helped bathe and shave his father before he died of Alzheimer's disease in 1998. Today, whenever he sees an adult with an aging parent, he treats them both as patients.
"I think it's a great time as a physician to broach the spiritual aspects of aging," he says.
His own father's death was peaceful, and he was surrounded by family members. But some of his patients struggle as much with family issues as with illness and aging. He referred to one woman who cared for her husband with Alzheimer's for years.
"She hung in so long and finally had to put him in a home where he lasted about six weeks until he died. Her in-laws never spoke to her again. I think what she had been through is nothing less than heroic," he says.
Kathy Bingham in Houston offers retreats for caregivers who suffer such losses. She also puts them in touch with other caregivers who can provide support when families fall apart.
Along with ministering to their caregivers, Bingham provides the seniors themselves with an outlet for their anger or fear or other emotions attached to aging. She conducts workshops about faith-filled aging and looks at ways in which elder adults can pass along their faith to their children and grandchildren.
"For example, our families don't talk about vocations like they did 30 years ago. Maybe these are things seniors can talk about as they go for a walk with their grandchildren. Or they can share the traditions of the holy water font in their parishes," she says.
"With any luck," says Bingham, "we will all grow old."
Kathy Saunders is a correspondent for the St. Petersburg Times and a freelance writer from St. Petersburg, Florida. This article appeared in the July 2006 (Volume 71, Number 7; pages 12-17) issue of U.S. Catholic.