Adina Saperstein, Roberta Saperstein, and Sara Saperstein Frug, circa 1982, and in 2011 on Roberta’s 65th birthday

My sister Sara and I became ‘caregivers‘ years before we were aware of the term, or the community and industry offering support for people like us. As Gen Xers, we navigated the caregiving and social service bureaucracy earlier than we should have - well before we found our own footing in adulthood.

Our mom is only 66, but due to a complicated illness she has already paved the path of care options: home care; group homes; assisted living facilities; and finally a nursing facility that has stretched its capacity to provide her with comprehensive care.

Almost a decade ago, when her illness made it impossible for her to live on her own, we started exploring the options. Sara managed her finances, and for the first few years I managed things on the ground – first informal home care, and finally moving her into her first assisted living facility.

Of the six homes she has been in since then, almost all have lasted less than a year.  Like clockwork, we would get a call telling us that she had been hospitalized for one reason or another, followed by another call from the home telling us that they would not be able to take her back.  By then I was living overseas, so Sara had to drive from upstate New York to Washington, D.C., find another facility, and move her.  With each move, the room got smaller, and more of her possessions were lost or migrated to various forms of storage.

Finally, in 2008, we found what we hoped would be a long-term solution.  But finding appropriate care was only half the battle.  The other half is paying for it.

The average cost of nursing homes in this country is $5000-$6000 per year.  Because of her special needs, hers have cost close to twice that. Financially, it’s the equivalent of sending three kids to a private university, simultaneously and indefinitely.

Mom’s income – social security disability checks combined with alimony – couldn’t begin to cover her monthly expenses.  First we went through her savings: proceeds from the well-timed sale of her apartment after we had exhausted home-based care options, and what was left of her modest inheritance from my grandparents.  Then we paid the penalties to liquidate her share of our dad’s retirement accounts, transferred to her in their divorce.

Meanwhile, as her medical and care needs got more expensive by the month, we confronted a looming and daunting Medicaid application.

We’d known this was coming, and had even made contact with an elder law attorney to help us navigate our options.  But we were also in denial, and thoroughly overwhelmed with our own lives.  By this time I was back in the US but traveling internationally 40% of the time for work.  Sara was in the midst of the sleep deprivation torture of new motherhood.  We were just figuring out how to be adults ourselves, and certainly weren’t prepared to take on complex financial management, legal maneuvering, and care coordination for our mom.

We were also in territory dominated by taboos. Medicaid is not something middle class families want to think about, much less talk about.  When we started the process, I couldn’t even define Medicare and Medicaid.  We had no reference point, no idea where to start. The process made us feel totally incompetent, triggering a lifetime of insecurity and anxiety.  It affected every area of our lives.

But there was a flipside.  As we navigated her financial affairs, we confronted the cycle of emotional baggage that haunted our relationships with her, and hers with her parents.  As we coordinated between lawyers, social workers, and professional caregivers, we opened new communication channels with her and each other.  As we confronted decisions we were not remotely prepared for, we strengthened our patience and compassion.  She reciprocated more and more.

Making peace with our mom, and our responsibilities and limitations in relation to her, helped us to make peace with ourselves. It’s a journey we hope to share with our peers as our generation starts confronting our parents’ aging and mortality.

We started Veneration to provide the reference point we needed during that process, for our generation and the ones to follow. Our hope is to provide a compass – and eventually a roadmap – through the maze of aging in a culture that wants to avoid it.

We’d love to hear your stories.  Contact us here:

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