Update: 2025 (Part 1)
It’s been a while since I’ve updated this blog. A lot has happened over the past two years—some good, some not so good. (So much, in fact, that I’m dividing this update into two parts for easier reading.) Most recently, this past June, Dan moved again.
In my last update (2023), I explained that Dan had left the waiver home he’d lived in for two years and returned to Harbor House.* Like so many nursing facilities, Harbor House never fully recovered from the upheavals of COVID. Even after lockdowns ended, the pandemic’s aftershocks remained. Chief among them: difficulty attracting and keeping qualified staff.
COVID had shown many frontline workers—especially CNAs—that there are easier jobs, with equal or better pay, outside of nursing homes. As a result, nearly everyone we knew at Harbor House had left. Administrators, nurses, and CNAs were replaced by a churn of strangers who seldom stayed long. Even with wages raised to attract and keep new hires, there were stretches with no administrator or director of nursing at all. Caregivers were overworked and undertrained, and without stable leadership, Harbor House became an unstable and overall unhappy place.
For a time, nurses and CNAs were brought in through traveling or temp agencies. Many of these agency staffers were excellent—sometimes far better than the new “permanent” hires. But because they never stayed long, Dan was continually being cared for by people he didn’t know and would never see again. For someone like Dan, who can’t speak and needs time to tell new caregivers what he needs and who he is—his awareness, his personality, his sense of humor—familiarity is everything. Instead, he grew frustrated, and his IED episodes became more frequent and intense, which only widened the gap between him and his caregivers.
I did what I could to help. I tried to introduce Dan’s new nurses and CNAs to him, to explain his background and routines, to humanize him. But more often than not, those caregivers were gone before any connection could form. I tried working with the social services staff, but without steady leadership, they couldn’t bring about lasting or meaningful change.
Meanwhile, conditions worsened. Agency staff were gradually replaced by cheaper “permanent” hires who, from what I observed, seemed less engaged with residents and their families. Call lights in hallways flashed unanswered, while CNAs scrolled on their phones at the nurses’ desk. Budgets, always tight, grew tighter still. Meals grew less nutritious and less appetizing—a stream of hot dogs and cheap hamburgers for both lunch and dinner.
By spring of this year, Dan was calling me at night with increasing urgency, asking me to phone the nurses’ desk to get him basic help. On each visit, he looked unkempt, miserable, and more dispirited. I asked several times if he wanted me to look for another place to live, but he always declined: better the devil you know….
I felt helpless—watching my brother’s quality of life erode and not knowing how to stop it.
(Continued in Part 2)
*As in my book, I use pseudonyms here for facilities and for everyone outside our family to protect privacy and avoid potential legal issues.