Having A Family Member In A Nursing Home Right Now Is Pure Hell

The agony of worrying about my grandma’s mental and physical health keeps me awake at night.

“I want you to know that even though we are limiting how often we touch residents right now, your grandmother wanted a hug — so I gave her one,” the nurse told my sister on the phone last week. “I was wearing my full PPE and a face shield. But I think she just needed someone to hold her for a minute.”

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My grandmother, Betty, has been a resident in a long-term care facility since January 2018. She suffered a massive stroke that left half her body paralyzed and rendered her mostly unable to speak due to apraxia. She required long-term care beyond the capabilities of anyone in my family, and she’s been living in a cramped room with another resident named Jenny.

“Jenny is our resident social butterfly, so we’re hoping she brings your grandma out of her shell a little bit and helps her get acclimated here,” the activities director explained at the time my grandma was “moving in.” And social she was, that Jenny. Always fluttering from room to room, delightfully chatting up anyone she could as she shuffled around with her walker. She was always dressed to the nines, always had some sort of wild task she would ask us to do because what Jenny lacked in boundaries, she made up for in being utterly amusing.

My grandma — who never emulated Jenny’s extroverted nature but was known, on occasion, to attend a group viewing of Sister Act — is at permanent risk for aspiration now due to the partial paralysis of her face and neck muscles. This means she can only have foods that are soft and easy to chew and swallow, and all of her beverages must be manually thickened due to dysphagia. My Julia Child recipe-loving grandmother despises the Sloppy Joes and stuffed peppers from the cafeteria, but hasn’t lost her taste for sweets. Often, the nurses and aides at her facility will sneak an extra ice cream cup on her dinner tray. Sometimes I bring her favorite chocolate with me on my visits, and I love watching her sigh with joy as it melts in her mouth.

Those are the small moments of her new reality that I hold on to, because nothing feels normal about visiting a loved one in a nursing home. Nothing. And now I have no idea when I’ll be able to bring her a favorite treat, an embroidery magazine, or entertain her with stories of her only great-grandaughters.

I have no idea when I’ll get to lay my eyes on her soft face, weathered with years of love and stress, ever again.

My grandma’s nursing home “locked down” before any statewide orders were issued in Pennsylvania at the onset of the coronavirus pandemic. No visitors, no one but staff going in and out as of March 12. I felt relief they were taking things so seriously, given the fact that the people inside were the most vulnerable to the virus. But it meant that I had no control over when my next visit would be, and had to make peace with the fact that I last saw her in mid-February when all of this was on the horizon but could not have been accurately predicted at that time.

The facility alerted our family of the first confirmed case of COVID-19 in late March. While it may seem like a forgone conclusion and something we should have prepared for, it’s impossible not to feel the chilling possibilities of what that news could mean inside every nook and cranny of your heart and mind.

We took turns calling the home to speak with nurses and staff who could tell us the most up-to-date numbers and how our beloved Betty was doing. It wasn’t until last week, when my sister called for the latest inquiry, when the full scope of this nightmare became imminently tangible.

“Jenny died,” the nurse quietly told her. “She was one of the first to contract the virus. We didn’t have adequate testing at the time, but there’s little doubt it was COVID.”

The nurse, generous with information that she didn’t have to share but knew it was important to us just the same, explained that Jenny died in the room she shared with my grandma. It’s unclear how long Jenny battled the illness, but the nurse said my grandma was, understandably, thoroughly traumatized by the entire ordeal.

It wasn’t very long after Jenny died when my grandma reached out for that hug.

All I could think about was my sweet grandma, far from her cozy country home that always smelled like tea, lavender, and Clorox (and it was always a little too warm inside to be comfortable for anyone but her), who was unable to speak or explain how awful it was witnessing what Jenny must have endured.

And I thought of Jenny, in her late nineties but in picture-perfect health, who did not deserve to end her near-century on this earth in such a cruel, gruesome way. I was overcome with grief and worry in a way I haven’t known before.

There is no way to isolate the residents who are confirmed positive. Staff members, who now have adequate protection for the time being, have also contracted the virus. Several obituaries of current residents have been published in the past six weeks. And my grandma, whose life was turned upside down two years ago with the worst health crisis she’s faced in over 80 years, is now extremely vulnerable to this vicious disease.

So far, she hasn’t shown symptoms of COVID-19. I know that can change at any time. I also know that her facility won’t be getting the “all clear” for visitors anytime soon; likely not even this year. I know that the spring visit we had planned where she would meet my second child for the first time cannot happen.

It’s what I don’t know that kills me. When I’ll see my grandma again, if she’ll ever meet my baby, if she’ll ever see my oldest daughter, with whom she shared a magical relationship, again. I know it kills her too. We’re sending an iPad to her so she can wave to us through the wonder of technology and see the faces of the family she loves and misses so much.

It’s not the same as giving her the hug she so desperately needs — that I need. I lie awake at night wondering if she’s staring at the empty bed beside her, worrying if she’ll be next. I have anxiety-filled dreams where I panic about getting to say goodbye to her if she gets sick and can no longer hang on after 83 years of fighting to be here. I write to her and, selfishly, pray a frontline worker who has two minutes to spare will read my words to her and show her the pictures of my girls I include with each three-page letter.

It’s torture, being on the outside of a nursing home when someone you love so wholly is trapped there as a pandemic wages its unrelenting war inside. I’m constantly drowning in “what ifs” and I cannot stop them from bubbling up every single day.

I just hope she knows I’d do anything to hold her for a minute.