My entire life, my grandmother walked before the women in my family, making everything look easy. She was the matriarch, serious, but with a quirky sense of humor. Gram never said “I love you,” perhaps a product of her Finnish roots. She was strong, and she was independent. And then she got dementia. That was when the program I’d known in an abstraction called “Meals on Wheels” became a rudder holding my family steady. It was a lifeline, and for a time we desperately needed it to survive a quickly approaching storm.
The story of my grandmother is far from rare. At the time I write this, 2.4 million elderly and disabled people across the United States receive a hot, nutritious meal daily through the program. It sounds so simple, but in reality this meal is far more than food. It is daily support that’s desperately needed to stay not just afloat, but also out of the hospital or nursing home. And if President Donald Trump has his way, this lifeline could lose millions of dollars in federal funding.
At first, Gram’s dementia had begun showing itself in her repeating stories. She had a tale for every part of her life in her past. She rescued animals. She raised three children. She devoured books. She worked as a nurse for decades. She volunteered at several organizations with a frequency that I assumed all adults did until I grew older and realized most people took days off when they weren’t at work. She had lived a life fueled by her own curiosity and strength. Throughout my younger years, watching her was the closest I had ever come to seeing someone living truly fiercely.
But then, her stories were repeated a little too frequently. In the backyard last summer, I held my breath as she began to tell me about the same owl she had talked about hours before. I listened. I looked up at the sky and wondered if she was telling me about the past because she knew what uncertainty was in her future. And I wondered if I was going to be brave enough to face that future by her side, knowing I wasn’t going to have a choice either way.
Later, on my way back to my home a few states away, as I thought about it and cried, one refrain kept repeating itself in my head: I am scared. Simply and completely.
Then, in the fall, her stories started to lose their threads of reason. Suddenly new acquaintances were melding into old figures of her past. More and more, the plot lines stopped being coherent. Over dinner, I’d meet eyes with other family members as she talked, trying to communicate silently the confusion, the grief we felt without letting her know. It was as if we were watching her walk toward the door without saying goodbye. We were helpless to guide her back. Her mind was leaving us without ever taking a step.
Finally, it was time for help. My grandmother had lived on her own ever since my grandfather died in 1996, and she liked it that way. No—she insisted on it that way. My mother shouldered the weight of bearing the news that changes needed to be made. The kitchen faucet had been left on too many times, flooding the linoleum. The cat wasn’t being fed with the same regularity. She needed help, and so did my mother, who at that point was caring for her daily on top of her full-time job as a nurse.
On one of her good days when she was lucid, my mom sat down with my grandmother and told her about the days when she was unreachable, how scary it felt. My grandmother looked her in the eyes and seemed to realize all at once the reality of beginning to lose her mind, and the future of becoming a burden on her daughter. “That must be hard for you,” she said, mourning her own life and her daughter’s pain.
They made a plan. The car would be taken away, and she would get visited three times a day: by a home health aide in the morning, by Meals on Wheels for lunch, and by my mother after she got out of work. Each of these visits was crucial in ensuring that she could stay home and also stay safe.
For my mother, Meals on Wheels meant that there was someone knocking on my grandmother’s door every day at the same time, checking on her to make sure she was safe. They had my mother’s contact information if for any reason Gram failed to answer. Every day, she had reassurance that someone was looking out for her mother, helping her keep this balancing act together. Her mother was safe, fed, and cared for, while still being able to live at home.
That meant my mom could go to work. Without that program, the whole system would have fallen apart, causing my mother to either quit her full-time job to care for Gram, or to send her to a facility prematurely, denying her these last few months on her own.
For those months, we knew what was coming, but none of us wanted to speak it out loud. The matriarch of the family, with her stories and her strength, would have to move to a nursing home for the rest of her life. The independence she cherished would be gone, and she would be confined to days she didn’t choose, to a life she had never hoped to live. But for those short months with Meals on Wheels, she got to live at home with her cat named Regis. She got to fully live out the twilight of her independence.
They don’t tell you before something like this happens that when someone you love becomes reliant on others to stay alive, every day feels like a tightrope walk, a careful balance to keep everything in place and everyone afloat. Every day has the potential to undo everything. So, every day you hope the world is a little kinder than you’ve been told it is on the news. You start to pray to whatever could be listening up there, just in case it might tip the scales in your favor.
“Here, here is my heart,” you tell the world. “It lives in this woman who some people don’t think is worth their tax dollars. She is everything to me, and please, just part the waves for her to reach tomorrow.”
Every day, that knock on Gram’s door from Meals on Wheels was a sigh of relief for my mother who was working a couple towns away. Every day, that knock meant that each of Gram’s family members scattered across the neighboring states could keep going about their days with a little less worry for her weighing them down.
The people of Meals on Wheels couldn’t have known how many hearts were tied to this woman with her straight-faced jokes and the cat she had to hold back from the door, but we were there, each day, so grateful.
Gram was fed. She was visited. In fact, she was even excited to tell us about the meals she got each day and the people who came to bring it. It was a bright spot in her otherwise uneventful day. She knew she couldn’t drive herself somewhere else, and this weighed on her, but the Meals on Wheels delivery was something she could look forward to. And that was truly invaluable.
After a few months of visiting nurses and Meals on Wheels, those final months of Gram’s independence came to a close. A compression fracture in her spine led to a hospital stay that extended into a rehab visit, and ended in a permanent residence at a nursing home. Now, Medicaid pays for her nursing home, a fact that lingers in my mind. Does Trump know that Meals on Wheels delayed her permanent move into a nursing home, a far more expensive alternative?
Gram cost Medicare around $7 per day for her Meals on Wheels lunches (in addition to around $25 per hour, nine hours per week for her home health aide). Now that she has moved to a nursing home with her care being funded entirely by Medicaid, she costs taxpayers $400 per day. It isn’t hard to do the math to see that the time that she was given Meals on Wheels home care to delay her move to the nursing home saved the government money, as well as helping our family keep their full-time jobs.
So now, we are in a new phase of relying on others to care for our matriarch. Now, we ask for the nursing home staff for her to stay afloat. We visit. We listen to her stories. We know that each day is a tightrope. We keep walking.