Nursing homes used to be the only stop
for seniors who need help. Now there are options...
One daughter's experience
I'M HARDLY THE ONLY ONE GOING THROUGH this experience. It has become the baby boom generation's latest, and in some ways most agonizing, life crisis: what to do when the parents who once took care of you can no longer take care of themselves. The age wave is mounting: 33 million Americans, an unprecedented 13% of the population, are over 65. Their ranks will more than double by 2030. The number of Americans 85 and older has nearly tripled since 1960, to 4 million, and will more than double that over the next 30 years. Along with that explosion has come a growing, and often confusing, array of living and caring options.
The moment when we must take charge of Mom's and Dad's lives is a wrenching rite of passage for baby boomers, who in many ways are still struggling to grow up. "As a generation, we haven't seen much death, and we haven't experienced a great deal of hardship ourselves," says psychologist Mary Pipher, author of the best-selling book Reviving Ophelia and the recently published Another Country: Navigating the Emotional Terrain of Our Elders. "We weren't in a Depression. We weren't in World War II. For many baby boomers, this is the first really rough patch in their lives." It can be rougher for those who are facing the dual pressures of the "sandwich generation": trying to raise young children and take care of aging parents at the same time. That's a problem I don't have to face. Yet with no brothers or sisters to help make the decisions and share the load, I'm facing the whole ordeal alone. Friends console me with tales of sibling squabbles over finances and accusations of who's not spending enough time with Mom and Dad. Others I know are trying to make up for years of seeing their parents only a couple of times a year, over Christmas turkey or at summer picnics. No matter; we all end up feeling guilty.
Things are better, in some ways, than they used to be. For the most part, our parents have put away more money than their parents did. Many can afford to live in retirement communities or pay for full-time nursing care. But throwing money at the problem (better hospitals, better doctors, anything to avoid facing the alternative)isn't the solution. Nor is micromanaging our parents lives-buying the groceries, doing the laundry, anything rather than actually sitting down and talking. Eventually we have to face the fact that the parents who nurtured us are now the ones who need nurturing. And unlike child rearing, there are no Dr. Spocks out there with time-tested advice. It's a personal journey for which there are few reliable road maps and precious little reassurance.
MY OWN DESCENT INTO ELDER-CARE HELL
began in 1995, when my mother, then 69, was found to have Lou Gehrig's disease. It robbed her first of her speech (and boy, how she had loved to talk!), then of movement of her limbs. My mom and I had lots of issues never resolved since my teenage years. But rather than get therapy, I decided to spend more time with her, taking months off from work to listen to old records, watch Masterpiece Theatre videotapes and look at family pictures with her.
As my relationship with Mom improved, my dad and I had knock-down-and-drag-outs over her treatment. He and the doctor wanted her in a hospital. She wanted to die at home. Dad wouldn't, couldn't pay for round-the-clock nurses. Part-time aides came and went, unable to take the hours and the unrelenting attention Mom needed. After she had a tracheotomy and required a tube down her throat, I had to learn how to apply suction to the tube when she felt the saliva backing up-a procedure most of the aides were either unable or unwilling to do.
She died almost exactly a year later, on Labor Day weekend, 1996. During that year, I loathed my dad at times, and I'm sure he felt the same way about me. As some men do, he just withered away after she died. He wouldn't let anyone into the house to clean except me. He ran off anyone who tried to help, then complained about loneliness. He picked up women on the bus, talked about getting remarried (always to someone in her 30s or 40s, I noticed), confided details of his marital life that I really didn't want to know. It was as if his internal censor had gone to sleep. And he began to lose his mind. He was convinced that city workmen were partying at night in his bathroom, that preachers were stepping out of the TV to say prayers with him in person, that a child had fallen behind the bed and was crying.
The doctor was adamant: Dad couldn't live alone anymore.
Pipher says that moves cannot be avoided, that being near family is what's important for the elderly when they live alone in a distant city. But I still wonder whether my dad's move wasn't the worst thing I could have done to him. I ripped him away from his foundations: from the pub he went to three times a week, the bus route he knew even blind, the house he could navigate in the dark, the newspaper that chronicled men he knew in the Jaycees, the people he had built houses and warehouses for.
He came to California and stayed with me for awhile. Then we began to search for assisted-living places. The most helpful guide was New Lifestyles, a glossy pamphlet published in many cities that explains the levels of care at each facility in town, from assisted living to hospices and dementia care. Social-service agencies, churches, hospitals and rehabilitation centers have similar listings. Friends recommended other places.
Dad and I visited all of them together. I was cheered by the activity in some; at others the rows of zombie-like elderly folk in wheelchairs lined up at the front door depressed me. There is no formula for choosing one. You have to inspect them thoroughly, check into state-agency reports-and ask, ask, ask questions. What's the ratio between staff and residents? Is there a doctor who visits regularly? What's the food like? (Eat there!) What kind of entertainment is available? (Go sample it!) What happens if my parent develops dementia? Will he be kicked out or moved to another, escalated level of care?
My dad chose a nice assisted-care facility with a spacious one-room apartment overlooking a courtyard in the Los Angeles suburb of Tarzana But after just a month there, Round Two of elder-care hell began. While taking a walk around the block, he fell. I was out of town on assignment. By the time I got back to the city, 12 hours later, the local emergency-room doctors had doped him to keep him calm. He had gone crazy, they said, when they strapped him to the hospital bed. (I'd fight too!) He'd had three beers, they said, and was uncontrollable-a man who weighed only 130 lbs. In just three days my father went from being self-sufficient to an invalid. His injuries? A two-stitch cut on his head.
I took him home and detoxed him. Getting him in and out of the tub alone was a nightmare. He got up for the bathroom every hour all night long for two nights. By Day Three I was a sobbing mess. I hired a 24-hour "helper" to get him back on his feet and let me return to work. My dad was atrophying, physically and mentally, before my eyes. I put him in a rehabilitation facility. They did their best but were short staffed. His doctors wanted to put him on the harshest psychotropic drugs available.
When several nurses warned me against the drugs, I fought for and got a milder drug regimen. But again, fearful that he'd get up and break a hip, they strapped him to his bed. He began to wither away, uninterested for the first time in food, because he was no longer allowed salt. He couldn't see to ring the bell for the toilet, so he would sometimes lie for hours in wet diapers or sheets until I or his 74-year-old sister would arrive for a visit. Half the time he didn't recognize me.
When Medicare and his supplemental insurance coverage ran out after a month, I was desperate. He clearly couldn't go back to his apartment. Luckily I didn't have to embark on a long search: the social-services lady at the rehab center recommended a nearby facility, actually two houses with six residents each, built around a garden, with a locked gate and round-the-clock nursing aides. It's what California calls a "residence for the elderly," far cozier than most of the corporate- or church-run rest homes and assisted-living facilities I had seen. The food is home cooked; there's a Friday-night Jewish service my Catholic dad loves; and no one straps him to the bed. But it's expensive: nearly $4,500 a month for room, board, doctors and medicine. How many people on a retiree's income can afford that?
Physically he's doing great, but he's dying bit by bit mentally. Now 84, he thinks he's been fired from his job, and he imagines Mom is still alive. Over and over, he makes lists of family and friends so he'll remember them; each time the list is shorter as he forgets more names. He thinks that everyone in the world now wears diapers. I'd laugh if it weren't so awful. Even with two aides on duty during the day and one at night-an astoundingly good ratio for a home with six residents- they can't watch him every minute. It took the new doctors forever, in my view, to diagnose an under active thyroid, which caused some of his confusion. He is in what doctors tell me is the early stages of Alzheimer's. Yet both his father and his aunt lived to 96. Will he have another 12 years of living in this netherworld?