When her 87-year-old mother was hospitalized with flu-like symptoms in January, Karen Hickey, 62, of Bensalem, Pa., went into juggling mode. “My sister and I told my mom not to worry about anything, we had it all under control,” recalls Hickey. “Then we’d go out in the hallway and say, ‘What are we going to do?’ We panicked.”
Hickey had plenty on her mind that week: her full-time job, her mom’s suddenly faltering health, and her 94-year-old dad, back at the home where she grew up. After two strokes and an above-the-knee leg amputation in recent years, the World War II hero was now partially paralyzed, and, outside the twice-a-day visits from home health aides, relied mainly on his wife for his day-to-day care.
While physicians identified some heart problems in her mom and worked to resolve them by installing a pacemaker, Hickey and her sister took turns staying over at their parents’ house to tend to their dad at night. They recruited an elderly aunt to sit with him when they couldn’t during the day. They alternated days off from work so one of them would be available when their mom and/or dad needed them. They called their brother in Virginia and told him they needed him there to help out as soon as humanly possible.
The family made it through the experience intact. But the week left Hickey acutely aware of the fragility of her parents’ living arrangements, and it made her wonder whether they needed more support. It’s a question an increasing numbers of adult children are having to ask themselves as their aging parents are living longer and dealing with the subsequent decline and disabilities that threaten their independence.
In some cases, grown children find themselves switching roles with their parents as they take on the responsibility of overseeing their loved ones’ needs. For many, it’s a brave new reality. And since ignoring it won’t make it go away (unfortunately), Real Woman consulted with experts and women who have recently traveled this formidable road to identify some important takeaways that can make the journey smoother for everyone involved.
Talk Early and Often In aging and athletics alike, the best defense is a good offense. Experts agree that talking regularly with your parents about their plans and wishes for the future will ease pressure later on when a health crisis or gradual decline arises. “It’s important to have these conversations even before you notice changes in your parents,” says Brian Carpenter, Ph.D., a psychology professor at Washington University in St. Louis who specializes in family relations in later life. “Families should get comfortable talking about growing older and their expectations for what they would want to have happen so that when there are changes, children can bring it up but it won’t be a surprise,” he says.
A neutral way to broach the issue, Dr. Carpenter advises, is by mentioning a news story or an experience involving a neighbor or friend (“Did you hear that Eva fell in her house last week?”), offering an observation (“Her health seems to have declined in the past few months.”), and seeing where your loved one takes the discussion.
Hilary Murray, managing director at Buckingham Place Adult Day Center & Home Health Care, Monmouth Junction, N.J., suggests finding a time when both you and your parents are calm and in good spirits to guard against defensive dodging or a quick downturn in the conversation. “Devote some time to serious discussion, and then enjoy each other’s company over tea or dinner,” she says. “Sometimes it’s good to have these conversations outside the home in another environment, perhaps when they’re visiting you in your home or out to dinner, when everyone is relaxed.”
When a diagnosis or age-related deterioration hits home and threatens the independence a parent holds dear—like driving—be prepared for the conversation to take a sudden turn toward the sour. “You have to grow a little bit of a thick skin and remind yourself that you are taking this step for your parents’ well-being and safety,” says Dr. Carpenter. “If you can explain to them that you are doing this because you care about them and you want what’s best for them, it can help in the long run. But it’s not always easy for parents to see that in the moment.”
An upside to the growth of our aging population is a swelling slate of resources available to help families navigate this increasingly common life stage. For example, if you are concerned about your parent’s driving, you can schedule an appointment at the driving school at St. Lawrence Rehabilitation Center in Lawrenceville, N.J., and your loved one can take a test and receive a professional assessment. “All you need is a physician’s referral,” says Murray. Oftentimes, an objective opinion will help put to rest protests that you are unfair or unrealistic in your observations.
Know Your Options
Options to assist older adults in the activities of daily living are expansive and customizable. Those who opt—and are able—to age in place or with a loved one can benefit from adaptive products like wheelchair ramps, stair lifts, shower rails, and seats that make homes more accessible. In-home assistance that ranges from an hour or 2 a day to 24-hour live-in care can be arranged through home health agencies. Adult day care programs are another option for older adults looking for a place to go during the day to participate in activities that promote their physical, mental, and emotional health (and for caregivers who can gain from a few hours’ break in their care-giving duties). When a move is preferred or necessary, options, once again, abound.
Amy Bryant, New Jersey/New York metro regional manager of the senior care referral service A Place for Mom, offers a rundown of some of the most common categories of care available (listed here in order of minimum- to maximum-level support):
Senior apartments, which mainly offer older adults an apartment building or neighborhood filled with peers age 55 and older, and maybe a community room and an organized activity here and there.
Independent living or retirement communities, which tend to provide hotel-like amenities such as housekeeping, laundry, meals, transportation, and activities.
Assisted living settings, which are licensed and offer care with bathing, dressing, medication management, and other daily activities.
Memory care settings, which primarily serve older adults with dementia. “It’s typically a secure setting, which allows the residents to wander about within the community or within a secure courtyard so that they are safe and accounted for,” says Bryant.
Skilled nursing facilities, which provide 24-hour nursing services to patients who need the highest level of care. While it’s common for older adults with deep roots to want to stay at home with the possessions and memories they’ve accumulated over a lifetime, it’s not rare either for seniors to welcome the simpler life, assistive services, and increased social opportunities that senior housing offers, according to Bryant.
Some older adults actually feel happier and more independent after a move because they find themselves less dependent on friends and family to do things for them when they can find the time. “Of course, it’s different for every family and situation,” Bryant says. “The important question the family should ask is what is the best option that will improve the quality of life for their loved one and meet his or her care needs within their budget? It’s really a variety of factors that families have to look at and decide on to determine what really is the best situation and solution for their loved one.”
But a decline in a parent’s health can limit or solidify options in a hurry. When patients at Capital Health’s Capital Institute of Neurosciences in Pennington, N.J., receive a diagnosis of dementia or Parkinson’s disease, they and their loved ones meet early on with social worker Victoria Pena-Cardinali, who provides information, guidance, and support on how to plan for anticipated changes in health and functional status.
While procrastination may be a temptation, putting off planning actually robs families of confidence and choices. “As soon as a problem has been identified, whether it’s dementia, Parkinson’s, or any other kind of degenerative disease, it’s never too early to begin to plan for future needs,” she says. “I do acknowledge it’s scary. But the more you learn and the more you educate yourself about the help that’s out there, the less anxious you will feel. It gives you power. It gives you power to make informed decisions when you can really think about what you’re doing and what you want.”
It’s important to keep in mind that, depending on the level of services necessary, senior care is very expensive. This spring, Elayne Baker, 52, of Spring City, Pa., moved her father from his split-level in King of Prussia, Pa. to a memory care setting in nearby Phoenixville, Pa. due to his worsening dementia. “Now I don’t worry about his being safe, I worry about paying for all of this,” she says. “And I worry that somebody will tell him how expensive it is.” Most care facilities will work with families on financial planning, but having an understanding of the basics is essential.
Applicants should know the amounts of savings, assets, and any monthly income, as well as debts. Long-term care insurance, which Baker was horrified to discover her father had stopped paying just months before she took over his finances, helps, although what it actually covers varies by policy.
Medicaid is sometimes an option, but because it serves primarily people who are poor, it generally won’t kick in until a person exhausts all other resources. Grants, subsidized housing, and sliding scales based on income are also out there to help older adults access the services they need. “There are a lot of complicated legal and financial aspects to this, so it’s a great idea to consult a lawyer who has some expertise in elder law,” says Dr. Carpenter. “They can be really helpful in looking at the family’s financial circumstances and figuring out how best to protect their assets and make sure the family will be able to help older adults manage their situation into the future.”
After her dad had his first stroke 5 years ago, Hickey learned from his friends about a Veterans Affairs (VA) benefit that ended up fully funding his in-home care. “It was a rough start because it involved a lot of paperwork and finding the right people to speak to, and then we had to get him down to the veterans hospital in Philadelphia for a visit,” she says. “But then everything fell into place.”
Over the years, her dad’s care needs have gradually increased, and, during her mom’s health scare in January, Hickey contacted the VA to apply for a live-in veteran care facility for both parents. Today, the application sits—completed but not mailed—in Hickey’s bag. Aware of her parents’ determination to stay in the family home, she can’t bring herself to send it in.
“If your parents don’t want to move, you can’t make them, and you don’t want them to be miserable. If they are happy in their home, you just make it work,” she says. “I never would have thought years ago that we’d be in this situation, having a parent bedridden for 5 years. It’s got its ups and downs, but we hope to have them with us as long as we can. We just take it one day at a time.”