I have stopped counting the questions. My mother asks me once again whether I will bring food for Yom Kippur, the recent Jewish holiday of atonement. I explain yet again that I am taking the train into the city from my home in the country two hours away rather than driving, so I can’t carry food easily. I repeat to her that I will buy groceries near her and make holiday meals for us to share.
Barbara's mother as a young woman.
Sadly, the repetitive questions often annoy me. I try to keep my cool. And when I’m calm and rational, I know it’s just one more sign of her aging at almost age 99. This also means that I must assume more responsibility and deal with the painful reality that I am watching this person whom I love decline.
Caregiving is tough. As it stands, my mother and I have become a pair, engaged in what has become a difficult slow dance. On most days it feels uncomfortable to dance with the same partner intimately all the time. Some days I just feel like sitting out a dance or two. I know I am not alone.
There are legions of women either younger or older than I, who are caregivers for aging parents and other relatives who may have made it into their nineties, even advanced nineties or centenarian years like my mother through sheer luck, because of advancements in medications and technology, having practiced healthy habits, or having a good gene pool. It is estimated that some 55,000 people have hit 100 or older, just 0.02 percent of the population. And most, like my mom, live on borrowed time with less memory, more physical ailments such as hearing loss, incontinence and lack of motivation (or energy) to care about good hygiene.
Keeping her comfortable and engaged in daily life has become tougher. I am in charge of her life and all that it entails. But at the root of all this caregiving is a promise I made to my late dad to take care of her and which I relayed to my mom.
Unfortunately, it’s impacting my daily life and even health. I race around to shop and cook her favorite foods, buy supplies, pick up some large print books at my library, and then jump in the car and drive the two hours to the city to make a delivery. However, if she runs out of something—food or panties and I cannot come into the city, I now have a backup. Many of the area shopkeepers have become my friends, out of necessity, and have loads of sympathy for my situation. I quickly call one of the neighborhood stores and have whatever delivered.
It doesn’t stop here. Other tasks I’ve taken on include her financials. I go over them online daily since the numbers are too small for her to decipher. I make her doctor appointments and escort her to them, check with the pharmacist, check off that she has gotten a flu shot and new pneumonia and shingles vaccines. I take her to the hygienist and take calls from her friends and family when they can’t reach her. Sometimes, she doesn’t hear the phone. “Is she with you?” the one will ask who worries and calls me. They have been friends since the early 1940s and their marriages to men who went as singles to Grossinger’s when the Catskills originally was a magnet for Jews who weren’t always welcomed elsewhere.
At the same time, it’s becoming more difficult to take her on an outing or pick her up and bring her to my house in the Hudson River Valley, which I typically do for most holidays and special occasions. This year I went to her for Yom Kippur, and for the first time ever, we did not sit together in temple. She tires too quickly and has found it hard to make it the short distance to her shul, attend the evening Kol Nidre service or the next day’s afternoon memorial service, Yizkor. After services, I had planned to sit outdoors on her building’s terrace overlooking the East River and talk about her late husband, my father, or whatever she wanted. Our conversations are briefer now, and mostly about the past. However, the point is to be together, so she doesn’t spend a holiday alone. For me it means just the two of us without other family members to enliven conversations.
Most days spent together I try to stop myself from losing my patience about almost everything even before I walk into her apartment and yell “hello, I’m here” since otherwise she might not hear me. Once a fastidious housekeeper, she leaves a dirty knife on the counter after using it rather than placing it in the sink or dishwasher. She leaves her discarded mail on a chair in piles by the front door rather than throwing it into a garbage can or walking it to her floor’s trash room. She has been told walking is good for circulation, even with her walker or cane, rather than lying in bed waiting for others to take charge. I lose patience that many days she stays in her nightgown, a scarf wrapped around her neck, even when it seems hot to me and the air conditioning is turned off. I encourage her to “dress” for our modest meals to make her—and me--feel better.
And then I lose patience when she asks me again if we can get rid of our lovely cleaning lady. She would prefer to make do with her aide, whom I hired after more than six months of battling that it was time to bring in an outsider to help her—and me. When the discussion again heats up, I explain the matter is “not negotiable,” a term I have come up with to use as if I am dealing with a precocious child or teenager yearning to be independent. “You need and deserve both,” I say. And when I’m very impatient, I add, “Let’s not rehash this. I live two hours away and can’t come in more. I work.” I’m not sure if she hears my explanation.
Fortunately, there are bright spots. On certain days, she might revert to the younger Mom I knew—who put others first, complimented me on how I looked or some recipe I prepared, told a story for the first time or remembered an old one I had never heard. And occasionally, I am proud of myself for thinking up a new activity we can share such as reading a book out loud to her, starting a new chapter each time, I visit. It’s too late for her to master an audio system where she must remember what buttons to push when. Or I show her on my Smartphone the photos my younger daughter takes of her two young sons, my mother’s great-grandchildren, who are a lifeline. And she agrees to the plan to start City Meals on Wheels, which brings food directly to her door, five days a week to ease some of my cooking and add another friendly face in the mix.
Yet, when we go out in public, she continues to amaze others. “She was born when?” the bank clerk asks when I show her license to help with an account. She adds, “Wow, you don’t look that old.” Or I hear from those who repeatedly tell me, “oh, you are so lucky,” I smile and reply “yes, I am.” I know I am for sure, but when honest with myself and my most trusted few I wonder selfishly how I continue our dance and take on more responsibilities and resolve crises.
And when I am not with her, I call her every morning to ask how she is. “It’s good to hear your voice,” she always says, going on to ask, “How’s B.,” the boyfriend, “and L., the younger daughter, and adds, “where’s J.?” my older daughter. She remembers everyone’s name. That’s good, I think to myself.
In fact, I know my mother’s mind still works well when she and I agree that the Sonia Sotomayor autobiography I started to read to her becomes tedious with too much detail about her life growing up in the Bronx. She rereads books, reminding me I’ll never be lonely if I have a book. I buy the new edition of Little Women to read to her and honor the 150th anniversary of its publication. We talk about TV shows she might like since that is her main entertainment. I buy the New York Times and share its contents to keep her engaged. “Cuomo won easily,” I explain after the last New York Democratic Gubernatorial primary. Then I know she will tell me again that his father Mario used to live in her neighborhood and she saw him at a local restaurant.
I try to focus on the positive moments and shut out any complaints—another urinary infection or her request to her doctor to give her “something,” because she’s lived too long. She says it so respectfully, reminding him that her late husband was a doctor. “I can’t. I don’t want to go to jail,” he says compassionately. I echo the sentiment, He looks at me caringly, knowing how tough this is for all.
When she periodically utters orders and doesn’t say please, I remind her. “Can you say please?” Doing so lets me know that I am appreciated for all that I do. She responds meekly, “I forget, I mean to. Bless you. I love you,” and then I feel guilty. I escape for walks out in fresh air, to a museum or friends’ homes or hide indoors behind my laptop and work.
Friends suggest assisted care, but I know she loves her sunny apartment and seeing younger people in the lobby or on the terrace when she ventures out. And I now worry that it’s too late to manage a new environment. She, herself, explains, “What would others want with an old lady?”
When I share and sometimes cry to my closest friends how hard all the responsibility is they tell me how I am the best daughter. “Nobody has ever treated a mom the way you do,” one says. Another adds, “I could never do what you do.” I think neither of those statements is true. In decades past, she would have moved in with me, but my two-story older home has no bedroom and full bathroom on the main level. If I really were so dutiful, I believe I would move in with her--temporarily. At least I then wouldn’t have to drive or take the train back and forth. But I also know that doing so might stress our relationship more.
My two daughters offer gratitude, “Mom we’ll do this for you some day,” J. says. L. concurs. And the truth is that I don’t want an award, or to hold them to a fleeting promise or have them repeat all the same steps to this dance.
For now, I want my mother to live with the dignity she deserves after all her years. And I simply want to muster more patience and empathy, so we both appreciate the time left to do our slow dance in step together for a long, long time.
Tips for others who care give
- Make a list of what needs to be done daily regarding cooking, cleaning, safety, hygiene, medications. If it helps, make a poster with the list and a place to check it off daily or do an Excel spreadsheet A Medic Alert or similar device is crucial because of possible falls, for example.
- Find what you are willing to take on and farm out as much as you can with other necessities.
- Try to have conversations; loneliness is a big problem. Ask questions, bring up topics. The elderly love to talk about the past.
- Try to be present when you can, another way to ward off loneliness.
- Find what gives pleasure, whether large-print books, books on tape, old movies, doing puzzles together.
- Take care of yourself, time away is important.