In homes across the nation, weighty discussions surrounding the care of our aging loved ones are becoming more common and necessary. Long-term care for many is uncharted territory until the need arises, and that often comes along in an unfavorable manner.
AARP released an update to their ongoing study, ‘Valuing the Invaluable’
that reported adults aged 65 and older are projected to outnumber children under 18 by the year 2034. AARP's data tells us that in just a decade, caring for our aging population will become increasingly challenging for younger adults. In the same study, it was reported that the unpaid work of family caregivers is valued at an estimated $600 billion. This shift raises many pressing questions, most importantly– how can we ensure the well-being of our elderly loved ones while addressing the substantial financial and emotional burdens that come with it?
To shed light on the challenges and potential solutions, we met with Linda Dunno, Jeff and Linda Hale, and Todd Hunnicut who shared their personal caregiving journeys, lessons they learned along the way, and the valuable resources that have made it possible.
Jeff Hale, a retired higher education administrator, and his wife Linda, a personal care attendant for a local long-term care organization, are both AARP volunteers.
Jeff never anticipated that he would become a caregiver to his mother and now her primary decision maker now that she lives in a memory care facility to aid in treating her dementia.
Jeff and Linda Hale
He says the responsibility was thrust upon him when his father and brother both passed away in less than a year of one another.
In addition to grieving the loss of two immediate family members, Jeff was now tasked with ensuring the next steps taken would be suitable for everyone involved.
“It was a challenge shifting gears and largely complicated because my mom was out of state,” says Jeff. “I didn’t want to rush into anything. Finding the right doctors and the right facility is not an exact science.”
While Linda had some prior experience assisting her siblings long distance in the care of her parents when they had to transition to long-term care facilities, every situation presents its own unique and ever-changing challenges.
“Even once we moved her here, meeting her needs has changed a couple of times,” says Linda. “She experienced a fall and had to temporarily transition to the rehabilitation side of long-term care and then back again to an area that best fit her needs.”
During the process of establishing and maintaining care for his mother, Jeff says he had to lean into a lot of his own research at times and make quick decisions while taking on a trial-and-error approach.
Outside of the financial aspects, knowing where to start or who to ask for help is among one of the most overwhelming and stressful challenges for families embarking on the long-term care journey.
As Jeff and Linda have become more educated and experienced they recommend utilizing resources such as the Senior Resource Guide that can be found in many Allen County Public Libraries and AARP’s Long-Term Care Scorecard
“We frankly learned because we were asking the facilities, what are we forgetting, and in most cases they were helpful,” says Jeff. “I think AARP and the Fort Wayne community are trying to do more as far as informing citizens of resources and holding sessions to get the word out.”
While it’s easy to point out the challenges and the things that have gone wrong, Jeff says despite the horror stories that you hear about long-term care facilities, he is thankful that in their situation, all those whom they came in contact with have really cared.
“When my brother passed away, I was out of state and I had to tell my mom by phone, that staff at that facility was in the room and made sure that that went well,” Jeff says. “I wish that there was more appreciation for the people who work in this profession.”
Linda Dunno, retiree and Volunteer President for Indiana of AARP, began her caregiver journey nearly two decades ago with her mother and father, when her parents lived in Florida, and she resided in Maine. Frequent airplane rides were a norm as she provided crucial support to her parents during moments of need.
Her mother eventually entered hospice care before her passing in 2011, and her father moved to Fort Wayne to be closer to Linda and her sister.
With her father now 99 years old, Dunno has watched him face numerous challenges as he has aged, from the loss of driving privileges to decisions about medical care and living arrangements.
“We've had some horrendous examples of what can go wrong, but we’ve also had wonderful situations,” says Dunno. “I think that's been my greatest concern is making sure he's getting the quality of care that not only is he paying for but is treated with respect.”
She remarks, that even with all that she has learned through AARP as a volunteer and president, being a caregiver is not easy especially when it comes to making the most informed decisions and advocating for your loved ones.
“My advice to most people is to get to know the director and staff of wherever your loved one is staying,” says Dunno. “Building a good working relationship with them makes it easier to discuss if there is an issue, but also makes you comfortable in discussing when they are doing a good job. I think they need to hear that too.”.
Dunno admits the financial aspect of long-term care in her father’s experience hasn’t been as burdening as she knows it can be for some.
“Dad had saved and he had good insurance and of course, he has his Medicare,” she says. “It hasn’t been a financial burden other than watching their savings dwindle over the years. We know how hard he worked but he didn’t want to live with us.”
Before retiring Dunno's job in management gave her the ability to work from home and a flexible schedule. Unlike her sister, who worked full-time in a factory and had limited time off and vacation days.
More family caregivers are in a position similar to Dunno's sister and have to find ways to balance their full-time careers and the responsibility of not only caring for their elderly loved ones but maybe even their own children. In extreme circumstances, those who do not have the necessary support systems in place may even lose their employment.
According to ‘Public Has Mixed Views on the Modern American Family’
, a study conducted by Kim Parker and Rachel Minkin, two-thirds of participants said, “Adult children felt a great deal of responsibility to provide caregiving and financial help to elderly parents who needed it.”
“As far as putting a personal monetary value on it, I guess we don’t think about it,” says Dunno. ”Of course, there are expenses like gas to visit and we purchase snacks and other personal items for him, but it’s our father. The invisible costs are absorbed into my responsibility.”
Although many will feel responsible and desire to do whatever it requires to make their loved ones happy and comfortable, with 70 percent of adults aged 65
and older needing long-term care at some point in their lives, it may not be feasible, especially without help.
As Dunno and her sister consider their own long-term care plans and the financial implications involved they hope they can remain in good health and help take care of each other.
“When you stop and think that you could be spending anywhere from $5,000-$10,000 a month, depending on the care that you need,” says Dunno. “If you could spend or redirect that money into making your home more adaptable and having someone come in on a regular basis, I think that’s the option we’re going to take. As nice as some of these facilities are, there’s no place like home.”
Genworth’s Cost of Care Calculator
projects in the state of Indiana long-term care services, could increase anywhere from $117 per day for community and assisted living to $420 per day for a private room in a nursing home facility.
Dunno emphasizes the importance of putting a plan in place, whether that be for aging loved ones or yourself, it’s never too early to begin addressing those conversations. She says AARP’s Prepare to Care
pamphlet is the ultimate planning guide.
“It literally walks you through step by step and you can put in any information that your family is going to need,” she says. “It also allows you to sit down and make a lot of decisions for yourself before it’s no longer an option.”
Long-term care facilities may serve as a preference and necessity for some, as was the case for Jeff’s mother and Dunno's father. However, most aging adults prefer to age in place and remain in their homes or with their families and communities for as long as possible.
Organizations like Aging & In-Home Services of Northeast Indiana, Inc. (AIHS)
play a pivotal role in supporting that option. AIHS, established in 1974, is a nonprofit, social service organization geared toward promoting dignity, independence and advocacy for all older adults, people with disabilities and their family caregivers.
While AIHS offers a variety of services for seniors and individuals with disabilities ranging from health, wellness, and community engagement, Todd Hunnicut, the Family Caregiver Program manager at AIHS, assumes a key role in administering the caregiving support that makes aging at home more feasible for all involved.
Jeff Hale and his mother
Hunnicut echos that one of the most common challenges that caregivers face when seeking support is simply knowing what support is out there and then accessing it, especially in their already busy schedules.
“We aim to do both things,” he explains. “We want to educate caregivers on the type of support that is available and then we help them tap into those resources so not only does it help them take care of their loved ones but also so that they can take care of themselves and get well deserved regular breaks from caregiving.”
While caregiving is a labor of love, the ongoing stressors it involves result in both caregiver burnout and compassion fatigue
, sometimes exacerbating conditions such as anxiety and depression. In many cases, the caregiver can become preoccupied with the care of their loved ones and may not realize their own health is declining.
“We want to give caregivers at least an eight-hour break a week,” says Hunnicut. “We know that they will be better caregivers if they are able to take solid physical and emotional breaks from caring for their loved ones. Whether that's getting them funding to do that in the home or accessing their own natural resources like family members and encouraging them to reach out for help.”
When it comes to the 2034 demographic shift, Hunnicut says AIHS is continuously improving and expanding its services to best aid the aging and disabled community. As experienced throughout the COVID-19 pandemic, with an increased demand for services, resources were quickly diminished leaving long periods of waiting before those resources were able to replenish.
“We’ve been hiring wonderful workers that are able and willing to go out in the community and assess people's needs,” says Hunnicut. “In some cases, we’re even providing the care in home, which is something we’ve never done before. We also recently started a Hospital to Home program to help those with dementia transition home.”
Hospital to Home continues the AIHS philosophy in supporting both carer and caree by providing aid for daily living activities such as housekeeping, meal prep and even care coaching for the caregiver.
Todd Hunnicutt, Family Caregiver Program Manager for Aging and In-Home Services of Northeast Indiana
These services, like 'Hospital to Home,' deliver a dual benefit by not only providing essential support for families in need but also alleviating the strain on long-term care facilities and institutions. This innovative approach signifies a paradigm shift in caregiving, aiming to enhance the quality of life for aging individuals while affording caregivers the assistance they require.
“We've got telephone-based, computer-based, virtual-based, we've got in-person, we'll come out to your home, we'll help you get services started in an adult day service,” says Hunnicut. “Any way we could do it, I think we're doing it! We’re always looking for other opportunities, too.”
In Hunnicut’s final remarks, he says he wants readers to know that AIHS is available to help with anything family caregiver-related.
“Aging affects everyone regardless of social identity or even socioeconomic status. We understand that it can be confusing. We're here to make it less confusing.”
This story was made possible by AARP Indiana.