Oftentimes caregivers need an advocate

I was recently visiting a client who had retained me as a patient advocate. While there, I had the opportunity to chat with the client's family caregiver, and you know what? I realized the caregiver needed an advocate, too.

I've written before about the stresses family caregivers face, how they can take care of themselves and how others can support them, but it never occurred to me that a patient advocate might be a source of support, not only for a patient but also their caregiver.

Advocacy for caregivers is receiving national attention, and for good reason. In its latest "Valuing the Invaluable" report, AARP estimates family caregivers provided 36 billion hours of unpaid care worth $600 billion in 2021. On average, a caregiver pays more than $7,000 out of their own pocket to take care of a loved one in transportation costs and other needs.

Becoming a family caregiver can be a temporary situation or a permanent responsibility.

It can happen unexpectedly, such as when a loved one is recovering from a stroke or heart attack, or it can evolve gradually, like in cases of dementia. What starts out as helping occasionally with shopping or housekeeping becomes almost a full-time job as a dementia patient's cognitive abilities decline.

On top of that, according to AARP, about a third of family caregivers of older loved ones live in a household with children or grandchildren. About two-thirds work full or part time, and their work lives can be cut short by caregiving, meaning their Social Security and savings will take a hit.

Why do family caregivers accept these responsibilities? Necessity is one reason. Cost is another. Hiring an individual or company to provide in-home care can be expensive, and there aren't enough people to do this kind of work, especially in more rural areas.

But we can't discount motivators like love and loyalty. Caregiving is one of the toughest jobs there is, and yet is one of the most rewarding.

Many caregivers face stresses from lack of support, financial concerns and physical and emotional burnout. We can support them by providing respite care, meals and help with housework, but be sure to ask first what they need and want.

Needing an advocate, though, is a different kind of support. Some issues a trusted advocate could help with are:

• Getting documents in order, such as HIPAA releases and advance directives.

• Obtaining better access to health care professionals and more detailed guidance.

• Providing referrals to elder law and financial professionals.

• Sharing sources of community support.

• Giving reassurance that they're doing a good job.

• Spotting emerging health issues, both in the patient and the caregiver.

• Accompanying the caregiver and patient to doctor's appointments and emergency room visits.

I don't think a caregiver would necessarily need an advocate indefinitely, but maybe just to get them through a rough patch. If you or someone you know is struggling with some of these issues, there are sources for finding an independent patient advocate in your area, including Greater National Advocates (GNAnow.org) and the National Association of Healthcare Advocacy (nahac.com).

I mentioned earlier that family caregivers are finally receiving attention on the national level. President Biden issued an executive order in April directing the development of caregiving resources for children as well as older Americans. In line with the executive order, the Centers for Medicare & Medicaid Services (CMS) announced a proposed rule in July that would allow health care professionals to be paid by Medicare for time spent training family caregivers.

The National Alliance for Caregiving (caregiving.org) is a nationwide nonprofit alliance of organizations that advocate for caregivers. One of its policy goals is to advance the goal of a "unified caregiving strategy to support family caregivers across the nation." You can sign up to receive resources and news updates.

AARP (aarp.org) is also on the caregiver advocacy bandwagon, working through state legislatures to improve availability of resources, alleviate some of the financial concerns caregivers face and improve the health and well-being of caregivers.

Family caregivers are some of the most loving and dedicated people I have met in my practice as a private patient advocate. They're strong, too, and a lot of them don't think they need help. My response to that is, "Yes, you do. All you need to do is ask."

• Teri Dreher is a board-certified patient advocate. A critical care nurse for 30+ years, she is founder of NShore Patient Advocates (northshorern.com). Her new book, "How to Be a Healthcare Advocate for Yourself & Your Loved Ones," is now available on Amazon. She is offering a free phone consultation to Daily Herald readers; call her at (847) 612-6684.