Jim’s mother-in-law has fallen again. For the fourth time this year.
He and his wife meet the ambulance at the emergency room, then try to keep the frightened, old woman distracted through the long wait. They check her into the hospital with several broken bones and an unsteady heartbeat. They spend days at her side, jolly her through the rigors of rehab and finally take her back to her apartment, as they have so many times before.
Along the way, the 60-something couple, friends of mine in Los Angeles, learn which pain medications make an 87-year-old woman delirious and which leave her in a stupor. They learn that Medicare covers orthopedic surgery but not long-term care at home. They learn about stage-three bedsores. They learn that out-of-town siblings can be summoned for a few days respite but don’t fully grasp the relentlessness of the caregiving task.
Nobody wants the old woman to die, but her misery is a heavy blanket muffling many lives. Each mad dash to the ER, each hospitalization, takes a toll. On top of the cost of assisted living, Jim’s mother-in-law needs private duty home care, or else the next fall could be her last. But what happens if and when even 24/7 help isn’t enough? A nursing home? Who pays, at upwards of $100,000 a year? And how long will the money last?
These are the trials many of us face during the final years of our parents’ lives, as we lurch, ignorant, from crisis to crisis. When my brother and I began this journey with my mother, who went from feisty independence to utter reliance on her children in a matter of months, we were making it up as we went along.
We knew nothing about entitlement programs. What do you mean Medicare doesn’t cover the cost of home care or assisted living or a nursing home? We knew nothing about the advantages and disadvantages of hiring companions and aides through agencies or word-of-mouth. What do you mean that the agency aide needs permission from a supervisor before picking my mother off the floor if she falls?
We knew nothing about hospital discharge planning. What do you mean she has to leave tomorrow when we have no place to take her? We knew nothing about geriatric medicine. What do you mean emergency rooms and intensive care units can cause a form of psychosis in the elderly, or that a catheter can lead to an undiagnosed urinary tract infection and even death?
We knew nothing about Medicaid spend-downs, continuing care retirement communities, in-hospital versus out-of-hospital do-not-resuscitate orders, Hoyer lifts, motorized wheelchairs or assistive devices for people who can neither speak nor type. We knew nothing about “pre-need consultants” who handle advance payment for the funerals of people who aren’t dead yet, or “feeders” whose job it is to spoon pureed food into the mouths of once-dignified men and women.
At the time, between 2000 and 2003, my brother and I felt terribly isolated. As leading edge baby boomers and the children of older parents, we were the first of our friends to go through the drawn-out process of watching a mother or father grow more helpless with each passing day until the role reversal put us squarely in charge of everything. Once in charge, we had to rely on each other as never before — sometimes perfectly in synch, other times at each other’s throats.
At work, the assistance available to new parents did not readily extend to our situation, which was as laborious as child care but without the joy or the promise for the future. When I asked for a four-day week here at The New York Times, exhausted from my dual labors, the person in charge of such matters, who readily agreed, noted that I was the first employee to make such a request but surely wouldn’t be the last.
How right he was. Today, in the newsroom at The Times and at places of business everywhere, middle-aged men and women in growing numbers are juggling their jobs, their parents’ increasing needs, frequent emergencies and all the other moving parts of their lives. They look stunned and very tired. I remember it well. Because I chose to write about aging and caregiving in the wake of my mother’s death, gaining a level of expertise I didn’t have when I needed it, they come to me with questions.
How can they find a reliable home health aide? What should they look for in an assisted living community? How long is the waiting list at top-notch nursing homes? How onerous is the paperwork for applying for Medicaid? Is it worth spending money for the guidance of a geriatric case manager? How do you persuade a parent that it is no longer safe to drive, or that the time has come for live-in help at home? What can be done about siblings who won’t carry their weight? Or about siblings who disagree over end-of-life or financial decisions?
The experience of fielding those questions inspired this blog. I intend for it to be a source of information and community for grown children faced with these new responsibilities, for the elderly adjusting to unwelcome limitations and dependency, to employers interested in easing the burden, for professionals in the field and for anyone else who wants to chime in. Whining is permitted. Wisdom, and humor, are especially welcome.
But most of all, I hope you will tell me, and each other, what problems you face and how you have solved them; what changes in American health care policy, in the workplace and in the community would make your lives easier; what has surprised and inspired you; and how your family has changed, for better or worse, as a result of this intergenerational experience.