I first got involved in healthcare for the same reasons that drive so many others to do the same. I wanted to make a difference. I wanted to help people.
I worked for five years in the long-term dementia units of various different nursing homes, and during that time I formed deep, genuine friendships with hundreds of residents. All of them lived with a vast array of different cognitive conditions, including Alzheimer’s, vascular dementia, and TBIs, and all of these disparate personalities were united in a common struggle: the fight to retain their humanity against the backdrop of a megalithic institution, locked into a system that treats people as dollar signs.
Spending so much time in a nursing home, either as a resident or a worker, changes a person. It changes one’s outlook on life, death, and health. It colors in the outlines of a jagged shape that society would prefer not to look at.
I’ve watched people struggle to retain their identity amidst the blur of Alzheimer’s. I’ve held people as they died. I found ways to communicate with people who’d lost verbal language to aphasia, I’ve cared for them when they were sick, and I’ve caught them when they fell. Working in the dementia unit, I struggled day after day to give each person a bit of myself, to show them that they deserved the same respect and love as anyone else.
So many people. So many stories. So many memories that bring tears to my eyes as I remember all of the amazing people who I’ve seen die, and as I remember all of the people I wish I could have helped more.
I remember the stubborn, fierce woman who kept pushing her wheelchair along until she was nearly 100, never letting down her guard, always making sure that no one pushed her around. I remember a man who would eat nothing but scrambled eggs three times a day. I remember an old electrician who used to open up the bottom of the telephone and pull it apart, always in search of an impossible solution to a problem that he couldn’t quite diagnose.
These people will never leave my thoughts. The same goes for the people that I worked with — the nursing staff, the administration, social services — all of them struggling day-after-day to be there for the residents. I’ve never seen people who work harder and put so much effort into fighting for the rights of others.
But the truly agonizing thing about nursing homes is the facelessness of the system that all of these residents live in, locked into a bureaucratic structure where the bottom dollar matters more than human individuality, and where countless people spend the rest of their lives inside tiny shared rooms, hoping for a day where they can finally go back home. A day that, for too many, will never come.
The reality of nursing homes in the 21st century is something we should face as a society, together, and find productive solutions for. Especially as an aging society, with a massive wave of Baby Boomers racing toward a point where huge decisions will have to be made sooner instead of later.
Nursing homes in the United States are overstuffed with residents, understaffed with underpaid caregivers, underfinanced, and constantly having to cut corners to make ends meet. It’s not unusual for two caregivers to have to take care of 30+ residents over the course of one shift. Imagine trying to take care of that many people—each with their own unique set of needs—in the space of eight hours, racing between rooms amidst the blaring symphony of call bells. Caregivers are responsible for providing each resident with such support as toilet assistance, walking, trimming nails, hydration, giving showers, checking for wounds, making sure the resident gets their proper exercise, and they also must be each resident’s primary line of communication to the world.
The overarching structure that nursing homes were built on is fundamentally flawed, immoral, and unsustainable. It was formed based on the horrific notion that disabled residents didn’t deserve basic human rights. Financial concerns mean that facilities are incentivized to pack in as many residents as possible into smaller and smaller rooms.
In order for nursing homes to get better, the entire system must undergo a complete upheaval. We need new ideas. New approaches. New solutions, centered on the individual needs of each resident — because yes, they matter. Every single one of them.
We can’t be satisfied with a system that’s “good enough,” when we can do better. These people deserve better. Just take a look at something like Hogewey in the Netherlands, an outdoor “dementia village” that strives to allow maximum independence for its residents. The creators of Hogewey took a long, hard look at the systems that already existed, and they decided that those systems weren’t good enough. That’s what we need in the United States, and all over the world.
Every person deserves the same rights and privileges. But those who are impacted by a cognitive disability have often lost the ability to openly communicate their needs. The people who live in nursing homes today, the dementia patients suffering from cognitive diseases that have already robbed them of so much, aren’t being heard. At this very moment, they are suffering within the confines of a system that doesn’t treat them as the unique individuals they are.
Many of these people have lost their voice, but if we listen carefully, we can help them get it back.