Greater Access to Long-Term-Care: A Call from the Panini Generation

As I was recently arranging care for my ailing father-in-law, a friend texted me that I was in the “sandwich generation.” I texted back “No, that doesn’t quite capture it. A sandwich can be light and fluffy – it is more like a panini – hot pressure squeezing on both sides.” She replied: “Ha! You said it!” She too has two school-aged children and aging parents who are in need of help.

Indeed, my day job and personal life have been on a collision course these past six months. In February, my mother-in-law was hospitalized for a week following a catastrophic heart attack that ultimately took her life after five days in the ICU. My father-in-law’s dementia has worsened and we recently moved him into assisted living.

Between these developments, my mom took a spill at home and broke her hip and wrist, and spent nearly six weeks in an inpatient rehabilitation facility. While my knowledge and understanding of the health care system certainly have come in handy (e.g., explaining to my father, who has a PhD, the difference between observation stays and inpatient stays), I would have preferred not needing to bring my professional expertise to bear to the benefit of my family.

We are fortunate in many ways: three years ago my husband and I were prescient and insisted that my in-laws move from central Pennsylvania to Maryland to be closer to us and my sister-in-law. My father-in-law has long-term care insurance that should cover part of his assisted living bill. My parents live in a one-story home in a nice climate so they should not need to be relocated – at least hopefully not for a while.

Our parents all have good health insurance, are native English speakers, have graduate-level educations and some savings. Yet, my husband and I still find that our parents need a lot of assistance – from translating an EOB (explanation of benefits, which might as well be in a foreign language), to helping inform a health care decision (yes, you should see a specialist for that problem), to managing all the paperwork to file a medical claims appeal, to getting a good lawyer to help update personal affairs “just in case.”

It is not uncommon for me to be calling my parents (using a hands-free device, of course, don’t worry mom) as I make the mad dash home from work to pick up a child from after care. These drive-time calls are to check in on them – to share the latest about the boys’ lives and their successes in soccer and karate – and also often the only time I have during the week to make a non-work related call. I have taught both my parents how to text so that helps with quick communication in between calls. When schedules allow, we enjoy doing video calls with the boys and my parents so they can catch up and bridge the time and distance between our visits. Yet, being squeezed in between two generations is stressful – I often don’t feel that anyone is getting my full attention or support.

I am an only child, so I feel a particular responsibility to stay closely connected to my parents. I am glad to be able to help them. It is the least I can do given they gave me life and a good life at that. While my husband teases me often that I am not technologically nimble, on a recent visit home, I was thrilled to help my parents with a variety of tech-related matters.

I also was glad to be an extra set of hands around the house – lifting and moving things, helping with errands, interpreting medical bills and other health information, and otherwise tackling their “honey do” list. I was fortunate to be able to take a week to visit and help them while my husband “held down the fort” with our high-energy 8-year-olds at home. But the experience has led me to wonder how the millions of aging Americans across the country are managing many of these same issues and how their family members are faring with their own “panini” experiences.

Specifically, I have spent a lot of time lately wondering and worrying about the lack of resources, physical and financial, that our nation has to provide quality long-term care to the aging generation. Since I navigated this recently with my father-in-law who has Alzheimer’s, I know first-hand that even in the greater Washington D.C. metropolitan area, there are long waiting lists and that quality facilities are very expensive. For people with age-related dementia and other debilitating health conditions, the quality of the providers is essential. These individuals are particularly vulnerable and can easily be duped or abused or can put themselves, unknowingly, in harm’s way.

Some people can or want to remain in their homes but need some assistance, help that often is not covered by some long-term-care policies, others need facility-based care, and some may move in with their family-members. Some families may want to provide care and housing to an aging parent but don’t have the time, resources, or home-environment to support the loved one’s specific needs. Others may not be in a position to be of assistance until “the kids leave for college,” then trading one generation for another – grandparents moving into their grandchildren’s rooms, is not as rare as it used to be. Some people don’t have family and don’t have resources. Where does that leave them?

Unfortunately long-term care is expensive as is the insurance to cover it and too many Americans cannot afford a policy and/or will not be able to afford the care they or a loved-one may need. In addition to the time sensitive health care issues facing the nation such as opioid overdose and mental health, policymakers must turn their attention to the long-term care challenges that are upon us as a nation.

With the rate of dementia and debilitating chronic conditions expected to rise among the oldest generation, we cannot afford to wish the problem away. The problem will not only continue to squeeze my generation but if left unaddressed will place a choke-hold on the nation. We need Congress to make this a priority and hold hearings on affordable quality long-term care so that the private sector and policy makers can begin to tackle this issue. By opening up this discussion and taking a closer look at all ideas, we can begin the hard work of easing the financial burden on families who are caring for seniors.

Doing so will help ensure that our children don’t become a second wave of the panini generation.

This article originally appeared on the Morning Consult blog.

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Ilisa Halpern Paul

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Ilisa Halpern Paul has more than 20 years of experience in government relations, advocacy, and policymaking in non-profit, academic, federally funded, and government settings. Ilisa leads the firm’s Lobbying & Advocacy team as managing government relations director and is president of the District Policy Group. Ilisa’s practice centers on advising hospital and health systems, medical technology companies, national patient advocacy organizations, health professional societies, and other health care related entities with respect to advancing their federal legislative, regulatory and programmatic policy agendas. She works with clients to establish and strengthen relationships with elected officials and federal agencies, develop and implement government relations and advocacy programs, craft effective grassroots campaigns, establish coalitions and third-party stakeholder partnerships and effect the outcomes of appropriations measures, authorizing legislation, and federal regulatory actions.
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