"Don't worry," Jane Pasimeni Willie told her mom, back in the days when Ellie Pasimeni was healthy. "If you ever become frail, you can come live with me and I'll take care of you." Frail was just a word, vague and benign.But when Ellie's Parkinson's disease got worse, frail began to mean something real: At 87, Ellie was wobbly and weak, her grip on her walker tenuous. She fell often, and even though she recovered from a broken hip in 2005, with each new fall since then she has healed more slowly and less completely. When she took a serious fall last January, it was clear to Jane and her husband, Ren, that Ellie could no longer live alone in her apartment, where she might lie on the floor for hours without anyone knowing.Jane loves her mom, and her promise to bring Ellie home had been sincere. But it was no longer as simple as Jane had imagined. Ellie needed supervision and help with "activities of daily living" — bathing, dressing, remembering to take nearly two dozen pills every day. Jane was a busy resource teacher at an elementary school and was still recovering from breast cancer treatment. Her brother and sister were supportive but far away.So Jane, 55, began to seriously consider what Ellie's doctor had been suggesting for a couple of years — that it was time for Ellie to move to an assisted-living facility, where she would have her own studio apartment but would have aides nearby to check on her.Ellie balked at the idea. And legally it was her right to decide to stay in her own apartment. All Jane could do was to wheedle and cajole and pressure, which she did. When Ellie finally gave in, she was so mad at Jane that she wouldn't talk to her for a week.Now, eight months later — even though she spends time with her mom every day at Christus St. Joseph Villa and remains convinced it was the right decision — Jane still feels guilty.To become, in a sense, the parent of your own parent — to be convinced that crucial decisions about your parent's life are best made by you — is not at all like being the parent of a child. Parents of children have parenting magazines, play dates, mommy groups. Grown children of aging parents often feel like they're on this journey alone.And it's no easier to be the spouse of a person who has suddenly moved from the ranks of "healthy old" to "frail old" — to suddenly need to change the soiled briefs of your wife, to discover that your husband has melted the microwave or has forgotten how to find his way home.Although the statistics vary quite dramatically depending on the source, it appears about half of Americans over age 85 don't need assistance to go about the dailiness of their lives. They may eventually need help, but the period of debility is typically quite short, measured in months, not years. This is the good news about aging.If you flip those same statistics, though, you come up with a number as daunting as the other was encouraging: Nearly half of old-old Americans — those with Parkinson's and Alzheimer's, those who survive a debilitating stroke, those who become blind or who have severe arthritis — may from that point forward need help.A single moment might change everything, especially when advanced age makes it harder to heal. Esther tripped over a dishwasher, broke her hip and never recovered. Billie was sitting in a parked car when she was hit by another vehicle. She died in a nursing home 10 months later.Even when you think you've made a decision about mom or your spouse, things might change.Ellie recently had a minor stroke that seems to have done little damage, but adds a new worry: Will she become too frail to stay in assisted living? That would mean a move to a nursing home, something else Jane promised would never happen."I felt like a traitor before," Jane says. "I do not want to make that next decision. We're always on edge emotionally and mentally, and it never goes away."Grown children often feel they're betraying their parents even to talk about these things. Don't use my name, says a middle-aged man who moved his 87-year-old mother to his house. He feels happy he's doing the right thing by his mother, but lately he's begun to worry. Macular degeneration has reduced her vision to a tire with no hub, the center undecipherable. What if she falls while he's at work and she's home alone? What if she can't get to the bathroom by herself? What if, eventually, she needs help actually using the bathroom? How will he take care of her?At some point, the "what if?" becomes a "now what?" Now what, asks the woman whose dad was locked out of an assisted-living facility one night during a snowstorm, wearing only socks and a Depends. He ended up hospitalized with hypothermia, and his health since has spiraled down, forcing her to make new decisions.Now what, asked 79-year-old Don Willard when his wife's dementia worsened, when the dead weight of her body became just too hard to lift every time she fell. "I was wore down; that's all there was to it," says Don, who took care of Barbara for five years and now visits her every day at 1 p.m. at Hazen Care Center.A dread of nursing homes is often the engine that drives both the angst and the decisions.Faye Parker and her husband moved to Provo from Seattle so they could live next door to her aging mother. As her mother's condition deteriorated, Parker hired a friend to do the bulk of the caretaking. But her mother has fallen several times, and both the EMT and the doctor have encouraged her to put her mother in a nursing home.So far, Parker has refused. "I would wake up at night and worry if she was tied to a bed," she predicts. Told that restraints are not allowed, Faye acknowledges that her views of nursing homes are outdated and that she should visit some. "It's like putting off your colonoscopy," she says.Carol Brandt's mother is also afraid of nursing homes, so Carol didn't even consider it when her parents' health began to fail. She persuaded them to move from their home in St. George to her house in Sandy, then she and her husband moved into their own basement, even repainting the upstairs so it would look just like the condo left behind in southern Utah.Carol's father has since died, and her mom can't be left alone. Carol, 69, talks frankly about the mixed emotions of wanting her to be as well as she can be for as long as possible and wanting it to be over. "I feel honored to help her through this part of her life. But, how can I say this," here she pauses, "you know that she's old and that her body is deteriorating, and in a way you're waiting for the other shoe to drop."A Salt Lake woman tallies up the cost to hire a personal-care agency for round-the-clock care in her mother's apartment, to keep her mother out of a nursing home: $11,000 a month for aides to come in and help bathe, toilet and dress her mother following a broken hip. But her mother doesn't want to move from her "independent living" senior apartment. Add the monthly rent ($2,700, which includes three meals a day), and the total is a staggering $168,000 a year.The daughter figures Mom's money — which she intended to leave her grandchildren — will last another year. Then what?This is the droll but candid advice of experts on aging: If you're old, make sure you had the forethought to amass lots of money and to have a large extended family. Including, says Utah Commission on Aging director Maureen Henry, "at least two daughters."Here's a common scenario: A daughter gets up extra early to get Dad up and fed, settles him into an easy chair, goes to work, comes back at lunch to check up on him, rushes home after work to make his dinner. Meanwhile, Dad has been unattended all day. "He may be hungry; he may need water; he's certainly lonesome," says Nancy Stallings, director of Caregiver Support for Salt Lake County Aging Services.Stories of caregiver burnout are legion. "It's fair to say that caregiving has become an epidemic," says Stallings. She cites surveys showing caregiver distress: a 63 percent higher mortality rate over non-caregivers of the same age; a two-fold risk of heart disease for women who spend nine or more hours a week caring for an ill or disabled spouse.The challenge is greatest for those who are neither rich enough nor poor enough. If you're not rich enough, you can't afford assisted living, which is expensive and is generally not covered by Medicaid, or home care, which can cost thousands of dollars a month. If you're not poor enough, you won't qualify for some county-run programs. And money may drive some to keep Mom home, whether they can provide well for her or not, simply because they need her Social Security check or pension to keep their household afloat, experts say.There may be built-in conflicts when parents move into a grown child's home: between a mother and her daughter-in-law, who never really got along and now fight for the son's affection; between strong-willed adults over whose kitchen it is. "They're angry about being dependent; they resent asking someone if they can have a cookie; they feel obligated" — but may be too afraid to complain, says Stallings.Sometimes, between needs and logistics and frailty, home is simply not the best choice. Doorways aren't wide enough for a wheelchair. A spouse is too weak to lift his wife. A husband wanders away in the middle of the night.Bernice Earl thought it was her duty to take care of her husband, LaVar. But when she found him lost in their driveway one day, trying to figure out how to get "those airplanes to stop dropping bombs," she knew she needed help.For a while, adult day care at Neighborhood House was the solution. She's convinced it delayed the need for nursing home care. Eventually, though, his dementia worsened, and he became more bullheaded and angry. She decided that putting him in a nursing home did not mean she had failed him."We as a society need to be more understanding of the need and be able to accept it's OK," she says. "Sometimes the most loving thing you can do is put them in a care center, where they can get the care they need."A friend describes her vacations: either trips to California to help manage the care of her ailing father, or trips to Texas to do the same for her mother-in-law. If you're a baby boomer of a certain age and your parents are having health problems somewhere else, at some point you have a choice: do long-distance caregiving, move to be near your parents or move them to be closer to you. Rod Betit gave up a prestigious job as director of the Utah Department of Health, and his wife, Ellen, quit a job she loved with the Boys & Girls Clubs of Salt Lake City five years ago to relocate to Alaska, where they had three ailing parents.Not everybody has that luxury or that determination. And the point is, there's no one, right answer. One Salt Lake geriatrician persuaded his reluctant mom to move 2,000 miles to his home so he could keep her safe. Another geriatrician moved her parents into the home of a caregiver couple. And a third fought hard to keep his mom out of a nursing home before realizing she needed to be there.Roz and Zell McGee are taking matters into their own hands. "I don't want to be a burden," says Roz, a Utah legislator who calls making her own arrangements "the greatest gift we can give our children."So they're looking at moving into a "continuing care retirement community," where they would start out in an independent-living cottage, then would have the option of moving to assisted living or a nursing home — on the same campus — should the need arise."There's certainly an element of denial about what's inevitable," says Zell about the tendency of people to put off thinking about late-life choices. "The question is, who do you want to be in control of the decision?"
What about Mom? Being a 'parent' to your own parent
E-mail: [email protected]; [email protected] When we think about our futures, most of us skirt the part of the picture that might include dementia, dependency and Depends. And we forget that it might also include newfound meaning, new friendships and second chances to reinvent yourself. In Gray Area: Utah As It Ages, the Deseret News will confront the ups and downs of — let's not pussyfoot here — old age. The series runs Mondays through December.