When Mom & Dad stay home — and need care

Years ago when my grandmother was dying — a process that seemed to consume her for a very long time — her children took turns having their semi-invalid mother live with them for a period of months. Grandmother was not an easy patient. She spent most of her days talking about how everyone she loved was dead — which used to make me wonder where my sisters, my long-suffering mother and I stood with her. But Grandmother’s decline was before technology complicated such events, and pretty much all that was needed was to put a borrowed bed somewhere, try to keep her comfortable and entertained and call the doctor if she needed anything. Most of her six children had at least one at-home family member who could handle Grandmother’s care for a few months without straining the family budget or everyone’s patience and good humor.

Caring for aging family members today is not so simple. Few families have a stay-at-home member able to juggle regular routine with patient care, such  care now often calls for high-tech equipment and/or high-cost drugs and interventions, and doctors don’t make house calls every other night.

In an informative and enlightening ‘Encore’ feature, Wall Street Journal writer Anne Tergesen follows the adventures of several families wherein siblings have become caregivers to aging parents.

Family cohesiveness is a tall order at any time of life. But as parents grow frail, brothers and sisters often encounter new obstacles to togetherness—at precisely the time they most need to rely on one another. Sibling rivalry can emerge or intensify as adult children vie, one last time, for a parent’s love or financial support. And even as parents grow dependent on children, the desire to cling to old, familiar roles can create a dysfunctional mess.

Today, with the economy and household finances in disrepair, such strains are more pronounced. According to a recent report by the National Alliance for Caregiving and AARP, about 43.5 million Americans look after someone 50 or older, 28% more than in 2004. In comparison with 2004, a smaller percentage—41% versus 46%—are hiring help. And more—70% versus 59%—are reaching out to unpaid help, such as family and friends.

Experts say it’s crucial that families figure out ways to work together, to work through their differences, for the common goal of caring for a parent. If they don’t, their parents will suffer—and so will they.

“Family caregivers are the backbone of the long-term-care system in this country,” says Francine Russo, author of a new book about how siblings can cope with aging parents, “They’re Your Parents, Too!” Siblings who work together, she adds, can help preserve not just one another’s health and sanity but also a “last link to their first family.”

There is, fortunately, a lot of support for family caregivers, through sources listed above, the Family Caregiver Alliance and other local or national groups. There are also helpful tips, many of which are outlined in Tergesen’s article: use new technologies, seek help, be flexible, keep lists, and laugh a lot.

The latter was what saved my family from collapse during Grandmother’s stays in our home. Grandmother would today be easily identified as clinically, chronically, severely depressed. My sister Mimi and I devised a game, after the first few days of jockeying for position as the one not to have to spend the afternoon with Grandmother. Whoever came up with the most hilarious joke to tell and see if we could make her laugh, or the most bizarre question (“Did Uncle James really go to jail, like we’ve heard?”) to prompt a family story, would win. I don’t know if this technique has real merit but it worked for us. We laughed a great deal, and Grandmother got to tell a LOT of previously untold family stories. Some of them were even true.

Siblings Overcome Conflicts to Care for Aging Parents – WSJ.com.

Helping Mom die

Flight #12 had not even left the gate in San Francisco yesterday before the conversation was underway. The man in seat #16F was talking to his new friend in #16E about his trip: another of many undertaken by himself and his siblings to their mother’s home in the long process of packing up, sorting through, tossing out, agonizing over. The scene is a familiar one to millions of Americans: aging, often isolated mom; far-flung, often cash-strapped, over-stressed children; a bewildering assortment of issues to be dealt with, ranging from health to housing to family dynamics.

I, of course, am the mom. Well, not #16F’s mom, and currently in good health and of relatively sane mind. But 76, with children across the continent and a dizzying amount of Stuff to be dealt with if my husband should have the crass inconsideration to die first and leave me to deal with it. (Actually, he’s been very good about making arrangements for disposition of his Stuff, but still, there are those piles and boxes and shelves of miscellany and cupboards of chipped dishes. And closets full of clothes from the 1950s and still perfectly wearable… but I digress.)

My sisters and I were fortunate that our dad looked after our mom as she slowly died, swearing they had a fine conversation the night before although dementia had long stolen her ability to converse; my father created his own realities. Twenty years later, the town of Ashland, VA, with the assistance of Randolph-Macon College, looked after our dad, because indeed it takes a village. But fewer and fewer of us have the traditional village, and more and more of us have the complications: dementia, physical issues, personal problems, too little financial and emotional resources, too much Stuff.

There is help. There are community centers and assisted living arrangements, there is the new Villages concept (more about that one in the next week or so) and an array of other anti-isolationist possibilities; there are nonprofits of every sort, from the Family Caregiver Alliance to multiple physical/emotional-needs groups to my alltime favorite, in name at least, the National Study Group on Chronic Disorganization. God willing, we may even get health care, but thanks to those earlier, similar battles we at least now have Medicare and Medicaid.

But too many of us still put it all off, and it falls to the children. We cling to the past in the form of too many boxes of old photos and letters and opera programs; we drive too long and invite fender-benders or worse; we think that old chair is worth too much for a garage sale; we forget to take the pills.

The issue, of course, is not about dying; it’s about living. Living as well as possible for as long as possible, as closely as possible to what we would choose for ourselves. But here’s what happens eventually: mom dies. It’s tough, but it’s probably okay.

I gave my card with the True/Slant website on it to the nice people in #16E and #16F; maybe they’ll check in. When I get back home, though, I think I’ll clean out some files.