Facing the inevitable with care, compassion and knowledge

By Lisa Ferguson

It was the phone call that Amber Sandhoff never expected to receive.

One afternoon in 2007, while driving home from her job as an account executive at KLAS-TV Channel 8, her cell phone rang. On the line was a caseworker at a California hospital, explaining that Sandhoff’s 66-year-old father was in grave condition, battling a serious liver ailment coupled with congestive heart failure. Federal privacy laws prevented the worker from providing additional information.

“I finally just said, ‘If this was your dad, would you be on the next plane?’ and she said, ‘Yes,’” Sandhoff recalls. “He was lying in the hospital. I’m an only child and he was separated from his wife, so I’m it.” She spent the next eight weeks flying back and forth between Las Vegas and San Luis Obispo caring for her father, whom doctors speculated had between six weeks and six months to live.

One thing was certain: Neither father nor daughter had plans in place—financial, legal, residential or otherwise—for his immediate or long-term care. Sandhoff began frantically researching topics online including advance medical directives, power of attorney documents and healthcare benefits. What she found, for the most part, were a bunch of “shoddy-looking” websites that lacked reliable information. “I was really frustrated.”

Her father went on to recover from his illnesses, but the experience inspired Sandhoff, who now resides in Colorado, to create the website parentyourparents.com. Filled with articles, blogs and resource information, the site is designed to help adult children and other caregivers assist their aging (and often ailing) loved ones in transitioning to the next phase of their lives.

Initially, the website’s elder care information was specific to Las Vegas, a city Sandhoff says offers “excellent services” for seniors. The site has since expanded to include cities in every state across the nation. “There are resources for people if they have financial constraints. There are assistance organizations and service organizations and senior centers, so we try to cover all of the bases … for somebody that’s looking for help for their parents, whether it is at the beginning stages or at the end stages” of the care-giving process, she explains.

Also available on the site are home safety check lists for seniors; vital information sheets for keeping track of insurance policies, funeral and burial plans and other pertinent data; and “conversation starters” to open dialogues between parents and adult children. Sandhoff, who serves as CEO of parentyourparents.com, says the latter may help others avoid the types of crisis-fueled decisions she and her father were forced to make about his future. “A lot of it is (about) communication,” she says. “Some family members are really open about it, and some people just aren’t.”

Conversations about an aging parent’s care—be it their medical, financial or residential options—can’t begin soon enough, according to Dr. Mark Edinberg. A psychologist in private practice who is affiliated with St. Vincent’s Medical Center in Bridgeport, Conn., he has worked in the field of gerontology for 40 years. A former professor at the University of Nevada, Reno, he authored the 1988 book “Talking With Your Aging Parents.”

“It’s the kind of thing that people hesitate to do, but … the earlier the better,” Edinberg says, and suggests broaching the big issues at a neutral time, “Thanksgiving, Christmas and Passover don’t work.” Topics should be framed “as a general concern, so that (the parent) can adjust” to the ideas presented. Meanwhile, adult children must remain “calm on the inside going into the conversation, so that may mean putting your fears on the back burner and letting your hopes lead. Be thoughtful about that.”

How to begin such discussions? “What goes on the plate first is, ‘We need to look at your future because we are all involved in it,’ getting in the idea that this is a family concern and not just an individual concern,” he says. That’s where the assistance of a buffer, such as an extended family member, trusted neighbor or clergyperson, may prove helpful. “Sometimes people need a reminder that the family cares and also is going to be involved.”

The difficulty of these conversations for adult children can come from several sources, chief among them being faced with a parent’s mortality. Asking Mom or Dad whether their will is prepared “is sometimes more difficult than asking them personal questions about their health,” Edinberg says. Then there are the “subtle issues of control, meaning infringing on a person’s right to manage their own affairs,” which may include taking car keys away from a parent who is no longer able to safely operate a vehicle. “That can be very uncomfortable for both parties,” and often leaves adult children wracked with guilt.

Edinberg’s advice: Refrain from stepping into the “parental role” despite the circumstances. “When we think of parenting in this context, we’re not thinking of all of the good things—nurturing, caring, giving, taking care of. You’re thinking of all of the awful things that no one would ever want to do to anyone, and you don’t have to do those.”

The key to having a conversation regarding an older person’s care, he says, is “being clear about what your intents are.” Planning for the future is “something that you’re doing with the other person. … If you’re going to do something for someone, they’re not going to like it.”

The issue of personal finances can be especially difficult to broach. Because people are living longer today than in years past (often with costly, chronic medical conditions), the need to make funds stretch for additional decades has never been greater. “People are torn between financing their kids’ futures and potentially having to cover some of their parents’ needs, even though they’re not legally responsible,” Edinberg says. “This is really tough and if people are not planning, it’s even worse.”

Serious consideration must also be given to the decision of where Mom and/or Dad will call home as they age, says Elinor Ginzler, director of supportive services at the Jewish Council for the Aging in Rockville, Md.

“If you, as the adult child, walked up to your dad and said, ‘By the way, Dad, we’re moving you,’ he would look at you like you’re crazy, as he should, because all people want to stay in charge of their lives,” says Ginzler, who previously spent 14 years working for AARP, serving as its director of livable communities. Research shows that “the older we are … the more we want to stay in the setting that we’re in. It’s that sense of comfort and familiarity, and it’s powerful.”

Some older adults can continue to reside in the house in which they raised their own family. As years pass and care needs change, in-home care workers can be hired to assist with a variety of tasks, from tending to medical issues to tackling light housekeeping work and even providing companionship. Others may opt for active-adult communities, where residents live independently “in an environment where they’re going to be surrounded by folks who are very similar to them,” Ginzler explains. In such communities, “Usually you find a pretty nice looking clubhouse. There may be a golf course, there may be boating activities, there may be fitness paths.”

Another option is assisted-living facilities. Residents typically live in small apartment-type dwellings and have access to common areas such as dining rooms where meals are provided, as well as additional support services “from laundry to cleaning of the house, all the way through to help with bathing,” Ginzler says. Because assisted-living facilities can vary greatly in terms of the amenities offered and price, she advises visiting several places before settling on one.

Meanwhile, continuing care retirement communities (called CCRCs) provide several residential experiences under one roof, which change to meet residents’ needs. For example, within a CCRC, a healthy adult can begin living in a condominium-type space, and eventually transition to an assisted-living residence or one that features skilled nursing care without ever relocating from the property. Such facilities “tend to be more expensive” than other residential options, Ginzler notes.

It’s also common practice for aging parents in to settle into the home of an adult child and his or her family, which may include a spouse and grandchildren. This option requires careful consideration and lengthy conversations well in advance of moving day, since family dynamics will certainly come into play in such an arrangement.

“If you’ve clashed with Mom all of your life, why would you think that moving her into your house would (make the situation) any different? In fact, it would probably be harder,” especially if guidelines are not agreed upon and followed by all involved, Ginzler says. After all, “They’re not moving in with you, they’re moving in with all of you.”

Among the issues up for discussion: Will the parent sleep in a guest room or a special suite? Will he or she be responsible for helping with household chores or childcare duties? Will Mom or Dad do their own food shopping and cook meals? Are they expected to shoulder some of the utility or mortgage costs?

“You really have to keep those lines of communication open, but it can work,” Ginzler says, noting the countless situations where having an aging parent in the home “has been incredibly valuable for the intergenerational connectivity that it brings” to families, especially those with young children.

“One of the things that you absolutely have to keep in mind at whatever level of engagement that you’re in with your parents is that these are the folks who raised you and that dynamic is the foundation for how you have to move forward,” Ginzler says. While it is valuable for an adult child to feel as though they’re giving back to a parent when he or she most needs the help, “What’s going to work best is if you’re genuine, and if what comes from you is coming from the heart.”