Family Caregivers Need Support; Are States Meeting the Need?

One day my toddler decided that she was going to push “Gamma” in the wheelchair. She went to the tippy-top of her toes, reached her hands high to grab the handles and then p-u-u-s-s-h-e-d. It clearly wasn’t going to happen without some assistance, but she didn’t see it that way. After several frustrating attempts she looked up at me and said, “Help, Mama, help…”

Choula PhotoI am one of 42 million Americans who care for an older adult. I also work full time and have a family. My mom’s early-onset dementia, compounded by multiple chronic conditions, has sent me into a tailspin in the five years since her diagnosis.

Initially, I was in a state of crisis: financially, emotionally and mentally. During this time I became a first-time mom and now have another baby on the way. It took me a while to admit that I couldn’t manage on my own, that I needed help. I discovered that having a functioning, reliable system in place to support me (the daughter and caregiver) as well as my mom was essential to my well-being and ultimately her care.

A report from the AARP Public Policy Institute, the 2014 Long-Term Services and Supports Scorecard, rates states on how well they deliver services and supports to older adults and their family caregivers. Specific caregiver support indicators include:


  • Legal and system supports: As one of the 58 percent of family caregivers who are employed, I find there are days when I can’t be in two places at once. I work in one of the several states/cities where paid sick days are mandated. Thankfully, I still get paid when I have to take my mom or daughter to the doctor or stay home when they are sick. I also have a manager at work who allows a flexible schedule, but unfortunately not all caregivers have the same advantages. Many must use unpaid leave, and many others are not allowed time off to care for certain family members.


  • Nurse delegation: Many families rely on home health aides to help the caregiver continue working. But in many states, even with an aide, the caregiver has to leave work to come home and give medications, injections or tube feedings. That defeats the point of having an aide, right? There are many states where nurses can delegate these tasks to family members but not a paid home care aide.


  • Elements of caregiver well-being: Many days (mostly nights) I feel overwhelmed – 55 percent of family caregivers feel the same. While it’s rewarding to care for my mom, it also is difficult. No wonder almost 50 percent of caregivers report experiencing a lot of stress.


My baby girl is still too small to push “Gamma” in her wheelchair without help. However, now she knows where to go for support to make that effort possible.

But many families don’t.

We need to spread the word about how family caregivers can get help, as well as make more supports available.

The LTSS Scorecard shows family caregivers how their state ranks in providing needed support. At the risk of adding one more thing to their already long “to-do” lists, I hope that family caregivers will use this information to educate policymakers, share their personal stories and demand improvements.


Photo: Rita Choula


Rita ChoulaRita Choula is a project administrator with the AARP Public Policy Institute’s Office of Strategic Initiatives. She manages a caregiver initiative, funded by major foundations, that seeks to provide nurses and social workers with tools to better support family caregivers across settings. She focuses on the areas of assessing the needs of diverse family caregivers and the development and implementation of caregiver assessment, support and services at federal, state and local levels.

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Barrier to Home Health: Doctors

The health care industry acknowledges that seniors thrive better in a home setting then in an institutionalized elder care facility. Concomitantly, while the industry espouses this professed principle, medical doctors often serve as the front-line barricade in permitting this principle to evolve to fruition. Many physicians require aged patients to come to doctors' offices for continued physical monitoring in lieu of these services being carried out in the comfort of the aged patient homes by skilled, trained and qualified home health care workers.

Elderly patients eventually reach a feeble stage where physician office visits pose a significant emotional and physical burden. It takes hours for my elder care worker and I to dress my mother, to extricate her from an emotionally comforting home environment, then transport her to doctors' offices, sit for periods in waiting rooms, see physicians and then transport mom home, by which time she is starving because we must restrict her food and coffee intake before medical appointments to preclude accidents on-site, such as bowel incontinence.

Mother is at the feeble age where she has little control over her urination or bowels. Many physician office restrooms are single stalls only. Even if the elder care worker and I succeed in getting mom to the restroom "timely," we may find the door locked and occupied by another waiting room patient.

The issue of bowel incontinence places us in an anxious state over the possibility of having to change mother's Depends filled with fecal matter while in the doctors' public toilet facility, or worrying about fecal drops remaining in the public waiting room area. That scenario is an abominable situation elder care providers seek to avoid since it creates increased risks of spreading viruses to waiting room patients if the restroom or the waiting areas are not swab sufficiently afterward to killed bacteria from urine soaked Depends or from fecal matter that occurs during the course of changing the Depends and discarding the fecal filled ones.

This situation also presents a possible health hazard to hospitalized patients in physician offices housed in hospitals where bacterial viruses may spread rapidly between floors to in-patient rooms.

I do not believe that many physicians have the level of empathy to know fully all the ramifications they are imposing on feeble elderly patients and on their adult children attempting to fulfill the demands of physicians who believe that office visits for the advanced aged must continue forth.

Physicians have geared the current health care system to their convenience, often at the expense of a successful outcome for their feeble, elderly patients. This must change because a crisis is coming.

With advancements in medical science, burgeoning new and innovative rehabilitation technologies and the proliferation of new designer drugs people are living longer and most will desire to remain in their homes. Unfortunately, the current system controlled by physicians advances multiple doctor office visits for these physically frail patients over these doctors approving home health visits.

Additionally, an impending wave of aging baby boomers poised to flood the current doctor exploited system only exacerbates the cry for systemic change as many of these aged baby boomers will choose to remain in the comfort zone of their homes, too weak physically, too feeble emotionally and too aged mentally to make ongoing multiple doctor postulated office visits. These aged baby boomers will become the new benign medically neglected as a result of the current system in place controlled by physicians who have final say over home health services.

It is disconcerting reading and listening to a health care industry championing elder care in the home while simultaneously throwing up roadblocks to aged recipients, to their adult children and to their elder care workers, all seeking desperately to avoid placing their loved ones in an institutional setting.

Jerry W. Doyle

Alexandria, LA.