Caregiving for older Americans is growing exponentially, with the aging of America. And Americans report that patients and caregivers find the duties of caregiving are overwhelming, a recent study found.
We’ve gotten several appeals recently for resources, so here’s a roundup of things we know. This is heavy on the “older Americans” view, but it also has great resources for caregiving for not-older Americans.
Must-use resource: Senior Health Insurance Information hotline — federally funded volunteer counselors who can help you understand the ins and outs of Medicare. Use the “Find Your Local Ship” button to find yours.
A basic and very important question: Is the person insured by traditional Medicare or Medicare Advantage, the privatized version? Depending on coverage, options can vary greatly. Prior authorization plays a big role in Medicare Advantage; less so or not at all in traditional Medicare. Our roundup and explanation here.
A Caregiver Starter Pack that Susannah Fox, a health and technology strategist, created for a friend who got dropped into caring for her aging, “very-ill-but-hiding-it mom.” “Good comments section, too,” she notes.
NPR’s Caregiver Survival Guide, also recommended by Fox, features advice from people who have served their family members. Fox adds: “I wrote about my favorite quotes in this post and it sparked a good conversation in the comments.”
The Ring Theory is a Los Angeles Times essay for people who are “going through something,” as Fox writes. The principle is: The person who is ill is at the center of concentric rings. “The closer rings contain their loved ones, the further out rings contain neighbors, colleagues, distant family, etc. If you are in an outer ring, you don’t complain or dump stress onto people in smaller rings. Comfort IN. Dump OUT.”
Archangels — these are people who are trying to help folks with the burdens of caregiving. I have not used them myself, but I know some of the people involved.
Area Agencies on Aging there’s a button here to find your local one. They can be very helpful.
“We had no idea what was coming: Caring for my aging father,” a New York Times essay (gift link).
Program of All-inclusive Care for the Elderly (PACE) is a Medicare and/or Medicaid comprehensive medical and social services program available in some states. It is designed to let eligible older adults who need nursing home-level care meet their health care needs in the community, by giving them coordinated care and support services, instead of having them go to a nursing home or other care facility). If you join PACE, a team of health care professionals will work with you to help coordinate your care. It does not work in all states. Here’s more information about joining. Conditions: Be age 55 or older; be certified by your state as needing a nursing home-level of care; be able to safely live in your community (with PACE’s assistance); be located within a PACE service area (currently available in the District of Columbia and 33 states); not be enrolled in certain other programs, including hospice services.
Respite care is short-term care for someone to give a caregiver respite. To find respite care programs in your area, visit the ARCH National Respite Locator or call 703-256-2084.
The Alzheimer’s Association has a number of resources for caregivers and families.
Leslie Kernisan, a board-certified geriatrician, writes about caregiving for older adults at her blog at Better Health While Aging. Find it here.
We did a project on this topic, focusing on the Detroit area, in 2022. It’s a bit dated but has valuable information. Find it here. One surprise: Government listings of providers were inadequate at best.
Consult with other families and patients who have similar needs. Peer-to-peer help is one of the best ways to approach health care. Look for an online group or a neighborhood group involved in, say, elder care or cancer care, or a group servicing blind people or those with a rare disease. A collection of peer-to-peer resources for specific conditions and illnesses can be found on this page at Susannah Fox’s website, on the “Patient-led innovation” page.
“Caregivers juggle meds, meals, money, and so much more. Here’s how they stay organized,” a New York Times Wirecutter roundup of tools to help caregivers. (The New York Times does not allow gift links on Wirecutter shares.)
CaringBridge was founded to make it easy to build community and to set up things like a mealtrain or transportation volunteers and other kinds of help when going through illness. A similar site: LotsaHelpingHands.
Hera Health: Find a senior health care expert, covered by Medicare. I just tripped over this company recently. I don’t know how good they are, but if they can do even a piece of this, then maybe they will be of assistance. A friend tells me that they do not operate in all states.
You may be thinking about getting a medical alert system. We covered this a few years ago. Here’s the story; it’s a little bit out of date, but it’s got some good information.
The Senior Medicare Patrol helps Medicare beneficiaries and their families combat fraud, waste, and abuse. Local resources are available on the site.
Hiring a caregiver
Hiring a caregiver can be complicated: There are different categories, including “medical,” “nonmedical” including personal care, and companion-homemaker are some of the common categories. Another is “skilled nursing.” Costs vary widely. Here’s a study about that and here’s a calculator to help you sort through your options.
These represent only generalities, and your local situation will certainly vary: New York City or Seneca Falls, N.Y.? Des Moines, Ia., or Kellogg, Ia.? These resources may not tell you specifics, and may not tell you the difference between short-term rehab for someone in her own home or long-term care for an Alzheimer’s patient with severe dementia.
There are a number of local providers, and also some national groups. Doing the research for this can be mindboggling. Note that our Detroit project found that government lists of providers can be out of date and fragmentary.
You can also check to see if the agency has a record on the Better Business Bureau or Trustpilot websites.
Residential options
Centers for Independent Living roundup from the Administration for Community Living, a U.S. Government website.
Nationwide star ratings for home healthcare providers, nursing homes, hospitals, rehabilitation facilities and other care providers are calculated by the Centers for Medicare and Medicaid Services, under the name “Care Compare.” Find them here. Find explanations here and here.
The Eldercare Locator is a public service of the Administration on Aging (AoA), an agency of the U.S. Administration for Community Living. Find it here.
A U.S. veteran may be able to qualify for services not available to others. There is also a program called “Aid and Attendance Benefits” under American Veterans Aid. There are also homes for veterans offering various levels of care.
There are some listings for adult family homes, assisted living and so on at Room And Care. They seem to be mostly active in the Northwest.
State resources may be extremely valuable here. For example, the New Mexico Health Care Authority’s Division of Health Improvement licenses and inspects assisted living facilities and nursing homes; at the agency’s Health Facility Provider Search website, you can look up a facility’s survey, or inspection, reports.
Senior living advisers are people who help sort through options. They typically are paid by the place that is selected for residence — assisted living, nursing homes and so on. They can also be known as a senior care consultant, an elder living advisor or consultant, senior housing consultant or advisor. Here’s some information about them.
“Older adults turn to ‘Golden Girls’ congregate housing and home-sharing programs,” The New York Times (gift link).
End-of-life care
“What experts wish patients knew about hospice and other end-of-life care,” University of Michigan Medicine.
Consider finding a death doula. INELDA is the International End of Life Doula Association. Their site is a clearinghouse of information and includes a directory of end-of-life guides. Susannah Fox, health and technology strategist and death doula, wrote in an email: “When talking with friends about death doulas, I explain that different guides take on different roles, depending on their expertise, experiences, and the needs of the people they are serving. Some doulas specialize in non-crisis end of life planning, helping people to set up their estate (there’s a lot more to it than simply having a will), planning care for when a terminal diagnosis hits, working on legacy projects, etc. Other doulas specialize in helping to set up home hospice, sitting vigil, managing the hands-on caring for a body after death, etc. There are as many specialties as you can think of, from LGBTQIA notaries (so people estranged from their families can be sure their friends have legal rights over their bodies & stuff when they die) to spiritual guides to help you run a non-denominational pre-death funeral for yourself. There are dementia specialists, cancer specialists, etc. The trick is finding the right one when you need it, so I encourage people to think about their end of life plans in advance.”
“My husband was kicked out of hospice for dying too slowly.” KFF Health News.
Fraud, waste and abuse in hospice practice has been on the rise. Here’s a reference on hospice fraud, from the Senior Medicare Patrol.
“Hospice fraud allegations are likely to hurt innocent people,” KFF Health News reports.
Emberlight: Center for Conscious LIving & Dying is a nonprofit in North Carolina based on the idea that death is a human passage.
A Death Cafe is a gathering where people drink tea or coffee, share snacks and discuss death.
