The Cost of Caring

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“It’s paradoxical that the idea of living a long life appeals to everyone, but the idea of getting old doesn’t appeal to anyone.” —Andy Rooney

“It sure doesn’t pay to get old, but it does cost.” This was the last line of several text messages between my younger brother and myself while discussing the possibly of our mother’s transfer from and assisted living program, at around $5000 a month, to a skilled nursing home at around $18,000 a month.

As our mom continues to struggle with the profound challenges that life at 91 presents, we find ourselves in the land so many caregivers understand all too well: the land of finances, Medicaid spend down, rehab costs, ER visits, moves from facility to facility, all while trying to maintain our mom’s dignity and right to a life free of unnecessary red tape.

As a mental health professional who has worked with caregivers both individually and in support groups, I have a profound respect for their courage and resilience. Due to previous family experiences with the role, I also understand that there is a distinct difference between helping someone else navigate these waters and going through them personally. As a result, I’ve watched as my advocacy on behalf of both caregivers and their loved ones has transformed into advocating on behalf of my family members. Additionally, as someone on the cusp of 65, I have a personal stake in how our society treats its aging population.

Like many caregivers, I’ve had multiple contacts with truly remarkable kind and caring souls. Whether they be professionals, or strangers who have gone out of their way to provide comfort, these interactions help to restore one’s faith in humanity. However, one of the reasons their acts of kindness leave such an imprint is that they often are outliers while the norm ranges from indifference to outright neglect.

As caregivers, we often must step aside from our direct roles in caring for our loved ones and turn the task over to helping others, knowing full well that no one will see them as we do and honor the life they’ve lived—especially when they display behaviors we know to be out of character. Thus, the stark realization that moving a loved one to an assisted living center, or higher level of care, does not end the worries or responsibilities. Many of us develop a “What now?” twitch every time the phone rings or a message alert dings.

When these struggles have the added layers of “How are we going to pay for this?” as we consider the sheer absurdity of the costs of growing old, and its impact on the quality of life, one can feel hopeless.

Meeting these challenges through deep dives into the worlds of Medicare, Medicaid, Long-Term Care insurance, etc. can provide some sense of control and relief. Others rely on serendipitous discoveries that illuminate the path ahead. Herein lies much of the angst caregivers feel: How our loved one’s age and are cared for should not be left to chance encounters and accidents of fortune.

The fact that, according to U.S. News & World Report, 1 in 4 Americans over the age of 50 are now family caregivers should give our nation pause to consider how we want to move forward in caring for the elderly. A good start is to back away from the urge to repeatedly survey whether caregivers experience stress related to their roles: They do, it comes with the territory. While advising caregivers to be ever watchful for burnout, compassion fatigue etc., has its place, it should not obscure the fact that financial concerns routinely rank as the leading cause of caregiver stress. While it may be true that “money cannot buy happiness," any caregiver whose faced the soul-wrenching realization that “we can’t afford that” knows that it can buy peace of mind.

Personally, and professionally, as I shuffle my way toward the “golden years,” I fear it turning into fool’s gold—leaving me both emotionally and financially bankrupt. Professionally, I will continue to offer support, advocacy, and comfort for those on the caregiver journey. Personally, I will hold out hope that someone with the same intentions will cross my path and tell me “We’ve got this.”