Anything called “the conversation” is difficult to have. Parents have “the conversation” with their teens about sex, drugs, alcohol and any number of other issues. Fifty or so years later, it’s the kids’ turn to have “the conversation” with their parents. The kids are no longer kids; they are adult children to aging parents. But maturity doesn’t always prepare them for dealing with their parents’ declining health.
Joanna Shea remembers having “the conversation” with her father. “He had heart disease and my siblings and I knew that he had limited time,” Shea says. “I was the one who said, ‘Dad, we want your wishes to be granted if anything happens to you. Not that it’s going to happen tomorrow or next month. Just IF. We don’t want to be fighting about how you want the funeral service to be. We don’t want to be fighting about who gets your belongings. We want to do everything the way you want it. But for that to happen, you have to tell us what you want.”
Logic was her ally, Shea says, and her father was receptive to “the conversation.” He complied, outlining his wishes while he was still able to do so. Not all adult children can be so even-handed in coping with their aging parents. Shea’s advantage comes from her special training. She is the social service senior administrator for the Delaware Division of Services for Aging and Adults with Physical Disabilities.
DSAAPD provides a wide range of services for seniors, the disabled and their caregivers. Adult day care and home delivered meals are under DSAAPD’s purview as are legal, medical and financial services. In 2010, DSAAPD created the Delaware Aging and Disability Resource Center to be a one-stop shop for information, counseling and support. DADRC is part of a nationwide network of resource centers and receives support from a variety of local and national organizations.
Shea says that one-on-one service is provided at resource centers throughout Delaware. DSAAPD also offers information through its Guide To Services For Older Delawareans and Persons With Disabilities, available in print and online.
Alzheimer’s is one of DSAAPD’s main focuses. In 2015, the U.S. Administration for Community Living/Administration on Aging awarded DSAAPD a three-year grant of more than $890,000 to support its Delaware Alzheimer’s Disease Initiative. The new DSAAPD Alzheimer’s Toolkit is one of the first projects to result from the grant. “The focus is very much on the families of people with Alzheimer’s, because the disease takes a huge toll on them,” Shea explains. “Endless patience is required because it’s like dealing with a child. Our No. 1 piece of advice is to get support from groups of professionals and other people coping with their parents’ Alzheimer’s. There’s no reason to go it alone. Help is available.”
On the opposite end of the spectrum are seniors who are quite healthy in body and mind, but could use extra help—or so their children think. One issue that becomes a bone of contention: driving. “It’s a big symbol of independence,” says Maggie Ratnayake, director of the Brandywine Village Network, an aging-in-place initiative from Jewish Family Services of Delaware. “Family members often call us because they are noticing decline in their parents, particularly if they are not driving with confidence,” Ratnayake explains. “That can lead to them not going grocery shopping as often as they should or not going to social events and then becoming rather isolated.”
Brandywine Village Network provides seniors with transportation, light housekeeping and bill paying. Some services are performed by volunteers and others require payment, but those providers are screened by Brandywine Village Network and form what Ratnayake calls “an in-house Angie’s List for older adults.” Brandywine Village Network is available in northeastern New Castle County and will soon be available in Sussex County.
Although housekeeping, transportation and bill paying sound like tasks that most people would welcome help with, some seniors have trouble admitting that they need assistance. “The adult child often tells us that their parent is declining, but is very resistant to change,” Ratnayake says.
Frame conversations around parents’ goals of maintaining their independence, Ratnayake suggests. As an example, she offers this exchange: Do you want to go to the grocery store? Great. Let’s find ways to get you there safely. Do you want to do all of your grocery shopping in one weekly visit? Great. Let’s find someone to help you carry those heavy bags into the house. “Come at it from a collaborative point of view,” she says. “If you say, ‘We’re taking away your car keys,’ you won’t have much success.”
Have these conversations in stages so parents don’t feel overwhelmed, Shea suggests. And, get all of the siblings involved. Parents shouldn’t feel that their kids are ganging up on them, but when it’s a matter of overcoming resistance, there is power in numbers. Stay positive, Shea advises. The message should be that everyone wants to support Mom and Dad. “Even if they live in California, siblings can have a role and contribute,” Shea says. “But get yourselves together first. Call a sibling meeting and make an agenda with responsibilities. Does someone have power of attorney and if not, who should it be? Who will handle Mom’s finances? Who wants to take care of groceries? Lawn care? Everything. Make a list and let people take it home and think about it. You can tweak the plan before you present it to your parents.”
Longer-term decisions need to be made with aging parents well in advance of their decline. As a framework, Shea suggests Five Wishes, a planning document created by Aging with Dignity, a nonprofit organization. Five Wishes is exactly what it sounds like: five decisions that people can make about their futures in case of illness, incapacitation and death. “It’s not as intensive as a living will, but it is comprehensive,” Shea says. “I did it with my mother. It’s tough. I cried through the whole thing. But now all four of us kids know what Mom wants us to do and we’ll feel good about doing it.”
Aging in place is not a choice for all seniors. Many need assisted living, memory care units and nursing homes, or specialized rehabilitation following surgery. Newark’s Churchman Village is one facility of choice and Nadia Caprice is usually the first person families’ meet when they arrive for a tour. Caprice is Churchman Village’s director of admissions and marketing and a trained social worker. “Overwhelmed” is how she describes the adult children she meets.
“The first thing I do is decrease their anxiety level,” Caprice says. “I ask them to share exactly what’s going on with their parents. People say, ‘Mom is falling more. She’s being hospitalized more. Can you help me care for my mom or dad?’”
It’s a heartbreaking question and Caprice understands the difficulty of relinquishing care of ailing parents. But that’s an emotional reaction, she says, because the medical aspects are pretty clear. Older adults with balance issues, any form of dementia and a variety of comorbidities are usually safer in controlled settings staffed by medical professionals. And adult children remain very involved, Caprice says. “If a medical decision needs to be made or a situation arises, my colleagues call a family meeting so that everyone can be informed and on board with the next steps,” she explains.
Finances also weigh heavily on adult children, Caprice says. Navigating Medicare, Medicaid and other parts of the system can be difficult. Churchman Village has a business office that helps residents and their adult children go through the process, which can take from six months to a year.
“Most adult children are unaware of how lengthy the process is and that it’s on the family to figure it out if the parent cannot,” Caprice says. “A lot of documentation is required and there are a lot of appointments to make.”
For those reasons, Caprice tells adult children that they must maintain their own health, both physically and mentally. “I educate people about having positive health habits and taking care of themselves,” she says. “Know that your loved one is protected. Now protect yourself so that you can be healthy and strong for your parents—and your own children, spouse and other people you love.”