Help for Family Caregivers

While traveling to Erie, Pa., for a town meeting on family caregiving, I was reflecting on my family roots. A little more than 100 years ago, my Lithuanian grandparents immigrated to America and made Shenandoah, Pa., their first hometown. My grandfather worked in the coal mines and my grandmother, fluent in six languages, worked various jobs while raising five children - one of whom was my mom. My grandparents taught me about hard work and perseverance, and my parents taught me all I'd ever need to know about unconditional love and family caregiving.

Family Caregivers in Pennsylvania


In Pennsylvania, family caregivers are the keystone of the state's long-term care system, helping their mothers, fathers, husbands and wives live independently at home - as opposed to in costly nursing homes. Each year, an estimated 2.7 million Pennsylvania caregivers provide nearly $20 billion in unpaid care for their older loved ones.

The recently released AARP Scorecard, Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers, found that Pennsylvania ranks 42nd in the nation regarding its support for older Pennsylvanians and their family caregivers. While some improvement to provide better, higher-quality programs and services has been achieved in the past several years, the pace of change is too slow to meet the rising demands of future generations.

elaine pa

During the town meeting, one panelist put it this way: "They can't build facilities fast enough to meet the demands of boomers - and I'm one of them! We need new options to provide care at home." Here in Pennsylvania, and in many other states, there are commonsense solutions that can be achieved to support family caregivers as they:

  • help keep their loved ones safe at home
  • perform medical/nursing tasks, and
  • juggle work and caregiving

Family caregivers keep their loved ones safe at home

Room for improvement: The vast majority of older Americans want to live in their homes as they age, but many seniors and their family caregivers need some help to make aging in place a reality. While states across the country, including Pennsylvania, provide services at home and in the community, resources are often too scarce, if available at all. States should make available more:

  • home health services by skilled professionals like nurses and physical therapists
  • respite care and training for family caregivers
  • help with household tasks
  • transportation and meals, and much, much more

Action needed: The good news is, providing this care at home costs states just a fraction of the price tag for institutional care, like nursing homes. By shifting resources toward care at home and in the community - and away from costly institutions - states can help more of their residents live at home as they age. That's the setting older Pennsylvanians prefer.

During the town meeting, I heard from many family caregivers who are working hard to help their loved ones live independently at home. Roberta, a caregiver from Erie, had this to say:


Family caregivers perform medical/nursing tasks

Room for improvement: Part of supporting family caregivers is making sure they have the information and training they need when their loved ones go into the hospital and as they return home. Today, almost half of the nation's 42 million family caregivers perform complex care responsibilities for their loved ones that were once provided only by medical professionals. These medical or nursing tasks include:

  • managing multiple medications
  • providing wound care and managing special diets
  • operating monitors or other specialized medical equipment

Action needed: This year AARP developed the Caregiver Advise Record Enable (CARE) Act, which is now law in Oklahoma. By passing the CAREGIVING-CAREAct-OnePager-Design-NATIONAL 2-18-14, Pennsylvania - and other states - could ensure:

  • The name of the family caregiver is recorded when a loved one is admitted to a hospital or rehabilitation facility.
  • The family caregiver is notified if the loved one is to be discharged to another facility or back home.
  • The hospital must provide an explanation and instruction about the medical tasks - such as medication management, injections, wound care and transfers - that the family caregiver will perform at home.

Family caregivers juggle work and caring


Room for improvement: Each day family caregivers face loss of pay - or loss of their jobs - if they need to care for their loved ones. Yet they still do remarkable things, juggling their work and caregiving tasks. In Pennsylvania, as in many other states, family caregivers are in need of stronger workplace protections.

Action needed: Policies like family leave and paid or unpaid sick time give family caregivers the opportunity to manage their caregiving responsibilities - without having to choose between their jobs and their loved ones.

caregiving forum in pa

Special thanks to AARP Pennsylvania for hosting the town meeting for caregivers; to Traci Teudhope, the wonderful town hall moderator from WJET-TV; the panelists; and all of the family caregivers who took time out of their busy day to join us.

Follow me on Twitter  @RoamTheDomes for more news on caregiving and other AARP  advocacy initiatives across the country.

For family caregivers, keep in mind: You're not alone.

Search AARP Blogs

Related Posts
December 11, 2018 10:07 AM
In an election year filled with partisanship and political fights, it’s no surprise that many Americans feel that their voices aren’t being heard or that the issues that affect their lives aren’t being addressed. But, many outstanding elected officials work hard every day to make a positive difference for their constituents.  That’s why AARP recognizes state legislators, governors, and other elected officials – from both sides of the aisle – who have stepped up and worked together to write, support, and advance common-sense policies that help older Americans remain in their homes and communities and retire with confidence. AARP is proud to announce our fifth annual bipartisan class of Capitol Caregivers, who fought this year to increase support for family caregivers and their loved ones, along with our fourth annual bipartisan class of Super Savers, who championed policies that enhance retirement security.
December 05, 2018 01:06 PM
Caroline is a mother of two children and a preschool teacher who unexpectedly became a family caregiver for her father after he suffered a major stroke. Her father, Tom, now deceased, lost the use of his right side and his ability to speak. Multiple surgeries and rehabilitation treatments later, he was able to live at home with the help of nurses. But it was up to Caroline to provide daily care, such as overseeing appointments and handling certain nursing responsibilities, like managing his medications. “I became the person my father could rely on more than anyone in the world,” Caroline said. “I became his safe place and his best friend.” In communities across the country, family caregivers like Caroline are caring for older parents, spouses and other loved ones, helping them to remain at home – where they want to be. Their tasks are done out of love and commitment, but are not easy. That’s why AARP is fighting for family caregivers and their loved ones in every state. In 2018, AARP advanced new policies to provide more help at home, flexibility at work, training, relief and more, which will benefit over 30 million family caregivers. Here are a couple highlights:
November 27, 2018 08:55 AM
A few months ago, I wrote a blog about the vital role that transportation options play in what we at AARP call “livable communities” – great places to live for people of all ages. Being able to get around is critical to earn a living, raise a family, contribute and stay connected to your community and enjoy life. And, having alternatives to getting behind the wheel of your own car is particularly important for older adults who want to stay in their homes and communities as they age.