Red Lake Nation News - Babaamaajimowinan (Telling of news in different places)

30 Times More People Receive Care in Their Own Homes than in Nursing Homes!


March 20, 2019

While there are 1.4 million people being cared for in nursing homes today, according to the National Alliance of Caregiving and AARP, there are 43.5 MILLION people being cared for by caregivers in their own homes. That’s a multiple of 30 times more people receiving care at home than in nursing homes. How can that be? This has got to be the best-kept secret in the history of health demographics!

For virtually every disabled, chronically impaired, or aging individual, there exists at least one caregiver volunteering to place themselves between that loved one and even worse disaster.

Since significantly more caregiving occurs in the family home than in nursing homes, a fair question might be: What occurs within those home walls?

While nurses are limited to a maximum of twelve hours per day, no such regulation is mandated for caregivers—many of whom regularly perform complex medical tasks while untrained and dangerously close to burnout themselves. Caregivers regularly find themselves overwhelmed with the abusive behavior of a mentally ill loved one. Although disturbing pictures of elder abuse often appear in a drive-by reporting, abuse inflicted on a caregiver by an impaired loved one rarely makes headlines. Ask any caregiver if they’ve been cursed, grabbed, struck, or choked by a loved one. The answers are shocking.

While a significant population, the numbers simply don’t support the conventional caregiver description of an “aging” issue. Disabilities, addiction, trauma, and chronic illness affect vast numbers. Tens of millions of Americans regularly throw their wallets, bodies, and emotional well-being into the path of loved ones with addiction and mental illness in hopes of protecting them. That’s what caregivers do, even if they don’t think of themselves as such.

Arguing with addiction is just as pointless as arguing with Alzheimer’s. The chronic disease of alcoholism can cripple families with the same viciousness as cancer, albeit with the added component of shame. Although the opioid crisis receives headlines, the caregiver surrounding the addict receives little mention. Who points the traumatized loved ones to safety?

In Hawaii’s recent medically assisted death legislation (Our Choice Our Care Act), “patient” is mentioned 156 times and “death” 24 times. The term “caregiver,” however, goes unmentioned. Yet caregivers have a significant stake in the medically assisted death debate. The absence of their loved one’s suffering (or abusing) does not automatically ensure serenity. Years may be needed to help heal what some now realize is a PTSD effect on caregivers.

Caregivers don’t have lobbyists, they are lobbyists. While advocating for someone they love, who advocates for them?

Signing the RAISE Family Caregivers Act President Trump called for the Secretary of Health and Human Services to create a plan to “recognize and support family caregivers” before July 2019. While appreciated, timely help doesn’t always require (and can’t always wait for) government to act.

Political leaders, clergy, and media can collectively use their podiums to address this massive group—today. Just as people in front of hurricanes are pointed to safety, so can caregivers be directed to seek medical care for themselves, attend support groups, seek counseling, or call a friend. While storms can’t be fought, those in their paths can be repeatedly directed to safety.

Privately offer thoughts and prayers, publicly, however, offer clarity and specific actions. During the dozens of times when law enforcement arrived at the home of Parkland shooter, Nikolas Cruz, did anyone address the mother of this disturbed young man and clearly communicate the importance of her seeking care for herself? The message of “…He [Cruz] may not make it, but you have to…” is harsh, but three months after Cruz’s mother died, his rampage left 17 dead.

Do caregivers know they need help or feel guilty for seeking help? What does help look like to a caregiver? These questions and more must be clearly and repeatedly answered for caregivers.

The goal is not to relieve caregivers of their challenges but rather to strengthen them during and after carrying those challenges. That help doesn’t require legislation, but it does require awareness and clear communication from those with platforms. The conversation must be reframed to help all parties understand that healthy caregivers make better caregivers.

Annually providing more than 400 billion in unpaid labor, caregivers represent an indispensable yet nearly invisible workforce. With the loss of identity being an early casualty in the caregiver journey, it comes as no surprise that so many remain overlooked.

As a nation, however, we better equip ourselves to address healthcare, end of life issues, addiction, and impairments of all kinds when strengthening and engaging the home family caregiver since inevitably, someday virtually all of us with either be one or need a one.

Peter Rosenberger hosts a nationally syndicated radio program for family caregivers. For more than thirty years, he’s cared for his wife who lives with severe disabilities. He is the author of 7 Caregiver Landmines and How You Can Avoid Them @hope4caregiver


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