In 1949, E.B. White captured the whole of New York City in a 7,500 word piece called, Here Is New York. My daughter downloaded the book to our shared digital account last week. "You might like this mom," she emailed me, "it will just take you an hour." She was right, the book was beautiful and short, and it made me homesick for New York City -- and I have never even lived there.
The beauty and simplicity of E.B. White's words haunted me for days, until I finally realized why. Parts of his book -- the parts where he describes the loneliness and lack of privacy in the city, sadly reminded me of my grandmother's nursing home. "I am curiously affected by emanations from the immediate surroundings," E.B. White wrote about New York. "The place resounds everywhere with loneliness and isolation and the romance of what has been lost." I get it. The nursing home resounds with this loneliness and isolation, yet there is no counterbalance of energy and excitement that E.B White finds in New York.
When I open the front door of the nursing home to visit my 99-year-old bubbie, I let in some much needed fresh air to the foyer where she takes her visitors. Though it is furnished with grand furniture set up in intimate conversation areas, there isn't much conversing going on amongst the "regulars" there. When I visit, I pull up a light orange plastic chair from the staff kitchen so I can be close to my bubbie. If I sit in one of those comfy chairs -- more than 18 inches away from her wheelchair -- she will not be able to hear me.
The morning I visit, in another area of the foyer there is the woman I have seen before, but never met, sitting beside her caretaker. I avert my eyes. I only know it's a woman because I have been told so. She is huddled under a wool hat, wool sweater, sunglasses and a pile of blankets in her wheelchair. She is unable to close her mouth. "She's dead," my grandmother tells me with a clear look of disdain -- like someone should have seen to it that she was disposed of long ago. "Just no one has told her so." But seemingly, just to prove her wrong, the woman cries out in pain as her caretaker straightens her out, presumably to make her more comfortable. With that task done, the caretaker settles in on the comfy chair beside her, talking softly on her cell phone.
An alarm pierces the stilted air when a former (I am told "brilliant") college professor, suffering from late-stage Alzheimer's, walks out the door. His caretaker has forgotten to turn off his alarm, yet again. The alarm screeches, for a full 30 seconds, before an aide (in no obvious hurry) comes over and puts in the re-set code. In that 30 seconds, you are not sure whether you want to pull your hair out, or if you are thankful for the moment of distraction.
A taxi pulls up. For about 10 minutes, we watch as a man, very, very slowly emerges with a walker, the taxi driver patiently helping him. I am told this man comes to call every single day to visit his wife on the second floor (she does not come down to the lobby). We watch him as he shuffles slowly, oh so slowly, over to the elevator -- a living reminder of the "passage of time and the swing of the pendulum," as E.B. White might say. I am awed by his devotion to his wife.
There is no sense of connection when residents suffer from Alzheimer's, cannot close their mouths or do not come out of their rooms. There is no privacy when you need help going to the bathroom. There is no fun when there is neither nature to enjoy, commerce to distract you and everyone around you is a stranger, and bound to remain so. There is no passion. There is no adventure, no generation of heat, no physical majesty, no visible symbols of aspiration and faith saying the way is up. When the only way is down, there is an irritability and tension that persists, because there is nothing to offset it. My grandmother takes her meals in her room, not the community dining room, because she can't stand "old" people. I don't blame her.
In the nursing home, there is not even a faint vibration of what E.B White senses in New York: "great times and tall deeds." There is no feeling that you can experience rejuvenation by shifting location. The feeling of "stuck" permeates the place. It is high in purpose and important in its furnishings, but there is nothing grand about adult diapers, sponge baths, rotting teeth or thinning hair.
I leave after an hour, wondering why anyone would live in a nursing home if there were other options available. But unbelievably, with every marble intact, my grandmother in fact made that choice.
"Writing is never 'fun,'" E.B White is quoted as saying. I generally don't agree; in this encore career, I wouldn't do it if it weren't fun. But there is nothing fun about a nursing home, and there was not much fun in the writing about it either.
When an ill person brings up subjects that make you feel uncomfortable, it's natural to want to squelch the discussion or rapidly change the subject. However, it's very important to listen unselfishly and avoid responding with, for example: "Let's not get into that right now. Can't we discuss something more pleasant?" or "Do you really think it's helpful to dwell on this topic?"
Whether the patient asks a spiritual or theological question that catches you off guard or she wants to know about the side effects of a medication, it helps to learn how to be noncommittal without seeming evasive. You don't want her to think that you don't care or that you're hiding something, and you definitely don't want to offer misinformation that might do more harm than good.
Even for people who weren't very spiritual or religious throughout most of their lives, it's natural to experience spiritual anxiety during a serious illness. And it's also natural for this anxiety to lead to questions that caregivers might find difficult or even overwhelming. If your loved one asks, for instance, 'What's next? Will prayer help? Why did God let this happen to me?' it's best to call in a qualified cleric.
Just as most of us are not comfortable with chronic illness, we are also not comfortable with crying. When tears appear, we tend to whip out a tissue and murmur something along the lines of, "It's okay. Don't cry." From now on, continue to pass the tissue when your ill loved one starts to tear up, but don't pressure him to stop sobbing. Tears are a natural emotional release for emotions ranging from anger to sadness to fear, and can be very therapeutic.
When your loved one is uncomfortable, upset, or worried, you might be tempted to utter platitudes like, "Everything will be okay," "I know how you feel," "God has given you a long life," or "It's God's will." While we hope that these phrases will be a quick fix to problems we'd rather not deal with, the truth is that they're trite and meaningless. What's more, sugarcoating reality doesn't fool most people, and it certainly doesn't spark positive change.
Anger is a natural human emotion, and it's important to recognize that chronically ill people have a lot to potentially feel upset about. Understandably, many patients are angry that they are so sick. Plus, their pain and energy levels might make them less patient or less able to handle stressful situations. Therefore, it's not unusual for caregivers to be on the receiving end when their loved one's fuse blows for any reason.
Understanding how and why an illness is getting worse and more painful is intellectual. But experiencing it is a very visceral and emotional thing. The patient needs for you to connect with him on a heart-to-heart, gut-to-gut level, not just a mental one.