National Family Caregiving Month

We celebrate the heroic family caregivers every November in the United States. This year’s campaign is urgent. Many family caregivers have reached their breaking point and others are close behind.

Pandemic’s Impact on Residential Care

Coverage of the nursing home deaths and infections from this virus are harrowing. In fact, since the first known outbreak in February in Washington state, many other states have undergone similar tragedies. The ripple effect is fewer admissions to residential facilities across the board. While I am a strong advocate for hospital at home, family caregivers are not receiving the level of training to succeed at tasks done by trained professionals in our healthcare system. Nationally our attitude toward the value and position of the family caregiver as an ancillary during a hospital stay is totally misguided. Family caregivers must be treated as active and valued care team members in order for this new discharge strategy to succeed.

Congregate Senior Care is Boarded Up

It is tragic to see all of the senior centers, respite, and adult daycare centers right now. The resurgence of this virus has decimated this vital source of social care for our seniors and working caregivers. Our national strategy targets people with multiple chronic conditions and advanced age at greatest risk thus gathering in groups is seen as too risky. Ironically, the adage of “what doesn’t kill you will make you stronger” is not the case here. In fact, social isolation is actually just, or more, detrimental for seniors.

Home-Based Care Redesign

Without safe residential and congregate care, where our vulnerable people able to find the help they need? At home. The rise in telehealth service is replacing medical care. Nurse coordinators are reaching out with virtual case management to identify and intervene quicker when an issue is identified. Insurance companies, healthcare providers, and social services are innovating to keep seniors engaged and safe. Fall prevention technology and remote patient monitoring augment the telehealth visits and care management calls. We are past due to include the home care services that focus on the social determinants of health as part of this new home-based aging system. It won’t happen soon enough for all of our seniors. The redesign will need to change government policies and move bureaucracies out of their comfort zones before this happens.

Shouting from the Bottom of the Well

While we wait for federal changes to government-funded programs, our family caregivers continue to bear the heavy burden of daily care. It’s a Catch-22 really. Rarely do family members have the luxury of walking away from painful situations just because ‘the system’ let them down. Insurance, governments, and care providers point fingers at one and another as the weakest link that fails our most vulnerable every day.

Rarely do we pay family members for nursing, homemaking, personal care, respite, transportation, home modifications…should I go on? Most family caregivers find the system too frustrating and time-consuming to engage. In fact, a very small percentage receive subsidized services. Waiting lists for needs-based services continue to grow as state government income dries up during this pandemic economy. No money coming in means fewer slots for services.

What Caregivers Need Right Now

The Rosalyn Carter Foundation conducted a family caregiver study. Here are their conclusions:

• Increased access to peer support. In light of the increased social isolation being experienced by caregivers, this is needed now more than ever. Access to peer support could be increased through the continued development and promotion of remote caregiver support groups, support services that are inclusive of auxiliary caregivers, and programs that train and support peer specialist counselors for caregivers.

• Creating more comprehensive virtual community-building resources for caregivers to combat isolation and perceived loneliness. This would potentially further empower caregivers to seek help and additional support and would aid in the organization of community-based caregiver advocacy groups.

• Increased awareness, access, and availability to respite options. Additionally, formal in-person respite services could be supplemented with virtual options. Practical support should be increased, including food assistance, supplemental childcare, and educational support, home health workers, and home cleaning services.

Add Your Voice to the Conversation

Fifty-three million of us identify as family caregivers that come from every demographic and ethnic group. We live in every community; many are your neighbors right now. This pandemic has made a difficult job next to impossible with rising rates of poverty, mental illness, and physical exhaustion.

The caregiving crisis fails to compete with images of abuse and neglected children or abandoned animals that tug at your heartstrings on the television. Our vulnerability lies within us, our families, our work lives, and our communities that don’t make the news except when the very worse has happened. Join our movement #RAISEcaregiving. Thank you.