Breaking promises: Honoring parents as life winds down
Editor's note: This article is part of "The Ten Today," a series that examines the Ten Commandments in modern society. This story explores the fifth commandment: "Honour thy father and thy mother."
CLEVELAND — When Jack Weissman's doctor said he could not safely swallow, his daughters thought hard about it, then opted not to change his diet. Food was the one pleasure left to him as he became frail. They signed liability waivers, and he continued to chew and taste, though he ate softer foods than he'd enjoyed when he was well.
But those same daughters, Nancy Hartman and Rozanne Weissman, couldn't keep all their promises to their mom, Gertrude, when she became ill a few years later. She was afraid of hospitals and didn't want to be in a nursing home. As her medical issues became more serious and her ability to care for herself waned, her daughters cobbled together care to let her be somewhat independent with hospice in her own home for eight more not-always-easy months.
Even so, Gertrude Weissman did spend the final months of her life in a nursing home after she fell and could not safely return home. Rozanne Weissman assured her as she was dying at age 96 that they would be okay without her and that she'd been a superb mom who would always be missed. The daughters knew they'd done their best. They had not been able to give their mom her way in everything — it simply wasn't doable — but they'd honored their mother's wishes in fundamental ways.
More than 39.6 million Americans were 65 or older in 2009, the last year with complete data. That's one in eight Americans. The number is projected to exceed 72 million Americans by 2030, according to the federal Administration on Aging. The fastest-growing segment of the population is the "old-old," those age 80 and older. Today's adult children will face many issues as their parents age, including what it means to honor their parents, as the fifth of the Ten Commandments entreats, including their parents' wishes about the end of life. Like Weissman and Hartman children, they will wrestle with which promises to keep and when it is okay — or even necessary — to break one.
It's a tricky question, especially when challenges multiply as time and resources become scarce and various illnesses interfere. A father says he wants to die at home, but when the time comes, there's no one there to care for him and no money to hire help. A mother retains her car keys long after failing sight and reflexes render it unwise.
"Fundamentally, doing this well is about honoring the people you love. That is, doing the right thing. In the hearts of all of us, we know what the right thing is. We sometimes doubt ourselves. We do really know, we just need help sometimes doing it," said Melissa Kahn, owner of Kahn Healthcare Consulting in Chicago.
One of the hardest things about honoring wishes, said longtime hospice nurse Mary Cannon, is "thinking that if we don't go down fighting, we haven't been valiant, that to be honorable, you should always be striving to get better and should exhaust every resource available."
On the other hand, accepting that a parent is not getting better doesn't mean forgoing comfort care or never treating acute conditions such as infections. "You never want to approach it that 'someone's dying anyway, so why bother?' Many people are hardwired to look at death as though something went wrong."
Often, it's a natural progression, "an event I knew was going to happen my whole life and here it is; let's deal with it," said Cannon, who works for Maple Creek Home Health and Hospice of Spanish Fork, Utah.
But knowing it's natural doesn't always help when the situation is achingly personal and involves someone you love. Cannon has a "golden rule" to help families in cases where the parent can't express his or her own wishes: If that person was looking at herself, what would she want and do? Is what is being done caring and respectful? Those are two key factors in whether parents are being honored.
Kahn thinks most children try to honor their parents' wishes. But honoring parents doesn't always mean giving them their way, she said.
Not all important questions are about death. If giving up driving is hard for a senior who no longer drives safely, adult children may wrestle with and consider what that responsible dad at 50 would have wanted. They may honor parents by doing what they must — and what their more responsible parents of bygone years would have desired.
Myrl Warner lived at home, caring for herself and her house with a little housekeeping help, until she was 90. But during her last year there, she fell several times, alarming her children, who realized they'd have to become more involved in decisions about her future.
"She made light of it; she really wanted to stay home, but it was getting too dangerous to be there," said her daughter, Vicki Bradford, also of Spanish Fork, Utah.
Warner didn't want a stranger moving in. She didn't want to live with one of her six children. Her best shot at independence, her children suggested and she eventually agreed, was assisted living, so she moved into Legacy House in 2012. Since then, she's gotten more frail. She needs a wheelchair or walker and supplemental oxygen. She's on hospice, which provides comfort care and handles minor maladies without treating to prolong life. Cannon is part of her hospice team.
Warner, a former Social Security service rep, is still sharp and decisive. But worry about what might happen if her health or abilities change is always a small cloud hanging over the family. The ultimate challenge for adult children of frail, elderly parents comes when a parent's health status changes and decision-making passes to the children. They have to figure out what is the right thing to do.
Will they honor her by doing what she asked? Or will that be impossible, and will they be forced to honor her in other ways?
When Warner went to rehab for a couple of weeks recently and then said she wanted to go home, Bradford said she felt a momentary fear. "I didn't want to know which home."
Most people arrive at a nursing home after what Josh D. McGilliard calls an "adverse event" — a euphemism for game-changers such as strokes and serious falls. The vice president of Kissito Healthcare, based in Roanoke, Va., said elderly individuals may go first to the hospital, then to skilled nursing facilities for inpatient rehab. Usually, it's a scramble to find a place because the hospital wants its bed back and it's not safe to send the individual home. Dementia or a chronic illness may lead to a nursing home for palliative care.
"Most of the time, these families face the decisions a little earlier than they planned and usually not at a time that's convenient or when it's been on anyone's mind," McGilliard said.
Mom or Dad may not want to give up their home, or low-income families may have to sell the home to qualify for financial help in the form of Medicaid. It's especially rough if an adult child has been living in the house, too.
There are also medical wishes to consider: Dad may not want to go through chemo again, but the children aren't reconciled to what that means or can't agree on it. Sometimes the child best equipped to be a caregiver isn't the one who ends up doing it, McGilliard said. The job may fall to the one living nearest. It's not just about what's best for Mom or Dad, but what works for the rest of the family.
Kahn helps families plan for, and hopefully head off, crisis decision-making.
"To honor wishes, you have to understand what those wishes are," she noted.
Creating living wills, signing advance directives and talking about death are important. But it is not a one-time conversation. Those plans are made when someone is well — or at least competent. Becoming frail is usually a winding road that may end up far from its starting point. So what happens if someone develops Alzheimer's and then has trouble swallowing? Does the plan talk about what to do if Mom aspirates? Kahn asks.
"These are difficult discussions. Not everyone shares the same religious beliefs or agrees on what quality of life is. We do this in steps, our goal to honor each person and their decision — not to criticize, but to understand where they're coming from," Kahn said.
She has seen families struggle — sometimes even war with one another — over whose viewpoint will prevail. That's one reason the conversations need to keep happening, the goals adapting to altered circumstances. One mom wanted to stay in her home "at all costs," but couldn't care for it herself, had no one close by to do it and couldn't afford help. Leaving her there on her own would in no way honor her, Kahn said.
She recommended exploring other housing options to the family, including cooperative housing for seniors with professionals on-site to help, assisted living and other arrangements. Families need to do their research, she said. Consulting a professional can often pinpoint options the family hasn't thought of. For example, a professional may know how to help make a house safer. She also recommends forming a "family team" early on that puts people in charge of the jobs they're best equipped to handle. One family member may be geared to provide care. Another may not be but might be good with finances. Play to family members' strengths.
Make decisions with respect and respect decisions, Kahn said, but always recognize that circumstances change.
"If the plan changes, it doesn't mean you don't love parents or are not honoring them," she said. Kahn said when family members understand a medical condition, they may better advocate for and work toward what's best for mom or dad. Often, the best way people can honor loved ones is to arm themselves with information.
Kahn figured she knew how her father would die: He had congestive heart failure and colon cancer. They had talked about and planned for that. But at 87, he forgot to lock the second catch on the fold-down seat that was attached to his walker so he could rest during exercise. He landed on his head on concrete. When it was clear he would not recover, he could think clearly enough to know he didn't want further treatment. He had a plan in place; his family just had to honor his wishes. He died a week later.
Loved ones ultimately trust you to make the right call, Cannon said. "Think about parenting a toddler. You wouldn't think twice. Honor them by being a responsible parent, even if you're parenting your parent. I know that's a tough thing to face."
Many things about her mother's last years could not be predicted or changed, Weissman said. But they honored her by doing the best they could. And those moments at the end of her mother's life, when she tenderly assured her mom that life would go on, that she could picture future loving meals around the family table and more great-children to share traditions and love, comfort Weissman when she misses her mom.
"It was a good death," she said.
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