Being a caregiver is hard, but resources are available to help make it easier

Being suddenly thrust into the role of caregiver can be overwhelming. But resources are available.

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, neither my wife, Susan, nor I were familiar with this disease. The words that accompanied the diagnosis — chronic, progressive, incurable — were stuck on a loop in our minds. I was to become a patient, and Susan a caregiver.

In the early days after my diagnosis, we both worked full time. I think we lived in the moment, ignoring how our lives would be changed by IPF. But those changes began in the fall of 2017 when I left my role as a corporate executive as my disease progression began to interfere with my ability to carry out my responsibilities. About a month later, the company that employed Susan was sold, allowing her to retire and step into the role of caregiver.

It was a new role for Susan, but she embraced it. Together, we found some resources that helped us find our way, and I want to share them here.

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Support groups

The Pulmonary Fibrosis Foundation (PFF) hosts a monthly virtual support group for caregivers.

PFF Caring Conversations meets via Zoom on the first Tuesday of every month. The group is intended to give caregivers a place to connect, exchange ideas about the caregiver role, and learn about other resources. Rick Tidwell is an active participant in the PFF group and cares for his wife, Heather Kagel.

“Sometimes only a caregiver can answer a caregiver question, and this group has so much experience and knowledge,” Tidwell said recently. “The caregivers in this group have been through so much that it gave me confidence I could handle the role.” He has been handling the role for more than seven years.

A search for virtual support groups using the PFF support group search tool reveals several other options. PFF also publishes “Caregiving for a Patient with Pulmonary Fibrosis: A Guide for Family and Friends,” which is available in English and Spanish.

Insurance

I enrolled in the Federal Long Term Care Insurance Program (FLTCIP) and also purchased supplemental long-term care insurance through Genworth in my late 20s, and used the programs following a recent hospitalization.

The FLTCIP elimination period was 90 days, and the Genworth supplement had no elimination period. My Genworth policy covered my home health aide, a licensed practical nurse, for as long as I needed assistance. The time Genworth covered was applied to the FLTCIP elimination period.

Medicare provides limited support for caregivers unless a specific medical order is required for home care. It also provides for caregiver education when medically necessary. Other services, depending on the patient’s needs, may be covered by Medicare, and a patient’s care team can help them determine what is medically necessary. Patients can start this discussion with a social worker at a PFF Care Center Network site.

Patients should also look into any private insurance they might have. We should use any coverage we have to our advantage.

Other government programs

If the patient receives care from the U.S. Department of Veterans Affairs (VA), the caregiver may be eligible for support from the VA Caregiver Support Program.

A Google search for caregiver support with the Virginia Department of Social Services turned up Virginia No Wrong Door, which provides links to other services in the Commonwealth and online guides for caregivers. Also, a site managed by the Virginia Department of Aging and Rehabilitative Services provides links to other resources across Virginia, and includes a link to a guide for caregivers titled “Taking Care: A Resource Guide for Caregivers.”

Both sites emphasize that caregivers need to take care of themselves. Susan experienced my journey from the caregiver’s perspective and I saw how difficult some days were for her.

November is National Family Caregivers Month. Being a caregiver is hard. I hope some of the resources listed here help every patient and caregiver make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.