Calling Florence Nightingale! But It’s Also Time to Care for the Caregivers

It’s inevitable. At some point in our lives, as our parents and partners age, a very close friend or one of our children might get injured, have an illness or need a replacement part. We must step into an important and big job for which we never went to school to learn, have no degree in the specialty or in many cases, no experience. It’s called caregiving.   

Right now, skilled caregivers are hard to find and terribly expensive. That’s when loving family members usually step in. It’s no easy task and can often morph into a full-time endeavor. Many caregivers, who begin eagerly to help, find it’s more than they bargained for as guilt emerges and burnout looms. 

As caregivers for our mothers and partners, we know it’s important to be prepared—to set boundaries and find ways to take care of ourselves while we take care of others. In our book, Not Dead Yet (pages 64 to 66) we give self-care tips for the caregiver. 

Richard Lui, the American journalist and MSNBC and NBC news anchor, was a caregiver for his father. In a documentary he produced titled, “Unconditional: When Minds Hurt, Love Heals,” Lui takes a poignant and realistic look at the challenges of caregiving. He says, “More than 53 million family caregivers aren’t paid and don’t get trained.”

In an op-ed in the Washington Post (May 22, 2023), Emily Kenway writes that she never imagined she would become a caregiver. She was living the independent life of many 30-somethings, focused on work and love. Then, her mom got cancer—and she quickly learned that the hidden world of family caregiving should be seen as an expectation, not an exception. 

Dr. Robert Levine, husband of the actor the late Mary Tyler Moore, recently released a documentary about her titled, “Being Mary Tyler Moore.” The film is about how he cared for her as her type one diabetes took its toll, including her eyesight. She died in 2017 after they were married for 30 years. She was 80 years old.

Some caregiving can be short-term. Perhaps, a parent, spouse/partner or a child has a broken arm, hip or knee replacement, cataract or bunion surgery, regular chemotherapy treatments which require us to drive them and often sit by their side. And when a loved one is incapacitated, this means doing the grocery shopping, cooking, cleaning, helping them with physical therapy and exercise to get stronger, laundry, and entertaining them when they’re stuck in bed and sad.  

On the other hand, some caregiving is long-term. Perhaps, a partner has MS or Parkinson’s that requires constant care, on and off. It can be exhausting and often a one-way street of giving of time, money and energy. 

Here’s our checklist of 12 points to help any caregiver get through the paces, which may need to be adjusted depending on the age, severity of the health condition, and disposition of your charge. 

1. Be positive. Approach the “job” with a smile. Try to be upbeat and perky. Unhappy? Don’t show it to the patient. However, share your woes with a confidante or a good therapist. And know deep down that in most cases you’re lucky to be able to experience this one-on-one relationship, though at times it will drive you almost insane.
2. Try to turn lemons into lemonade. If the person is cranky or whines, and it’s driving you crazy, deflect. Figure out some activities that may bring smiles—looking at old photos together, turning on classic movies or their favorite music, calling or zooming with relatives they rarely get to talk to and certainly never see. Try doing a jigsaw puzzle together, taking a walk if they can walk—even in a wheelchair, or cooking a favorite food they have loved. Hate to cook? Bring in takeout. Read a book if the person’s eyesight is going, which Barbara regularly did with her late mom. Or play an audio book and sit and listen together.
3. Set boundaries. It helps if you can establish a set routine. Think about when you had a new baby and tried to get the newborn on a schedule so you felt you had a modicum of control. It also helps the patient know what to expect, if they can remember, “Oh, yes, it’s time for our tea and cookie period,” which can be a good diversion.
4. Know when to take breaks. Don’t think you have to be glued to the hip of your charge. You each may get sick of each other and need to do your own thing. It’s perfectly acceptable. Think of paid help who get time off. Otherwise, you will burn out more quickly and you will need a caregiver, too.
5. Know when to break and escape. Few can perform this kind of help every day and all day, so tap other family members or friends to help for a few hours while you decompress and do something for yourself. Or, find some professionals you or the patient can afford to pay for a few hours. And reach out to food providers too such as Meals on Wheels in New York City, which provides free meals to the elderly. It’s not a five-star restaurant experience but it’s mostly edible and fresh. Want more gourmet? Most food places have gift cards, and many will send or deliver. Zabar’s in Manhattan is a favorite of ours in case you wondered. We love its bagels, cream cheese, rugelach, babkas and rye bread. Citerella’s is another with great lobster rolls and other fish, fresh fruit and sweets, just to give you some ideas. Or go to a local food store or caterer and ask the person or store to prepare a special meal, with enough leftovers for multiple nights or lunches.
6. Learn to keep your mouth shut. If the person is in great pain or deteriorating mentally, they may take out their frustrations and unhappiness on you—the soul of goodness. Practice not saying anything back when insulted about your actions, food prep or appearance. Just leave the room. It’s not the real person talking, or we hope not. And if the person is so insulting you cry, that’s fine. Just try to do so out of their sight. Sometimes you may need to speak up; do not feel guilty. It goes with the job responsibilities.
7. Find humor somehow. Laughter is the best antidote, particularly when you see no light at the end of the tunnel. If they wobble when you walk them down the hall, make it fun. Wobble with them. Don’t take everything so seriously. Watch a funny movie, read a funny book, look at New Yorkermagazine cartoons including Roz Chast.
8. Reward yourself. There’s no reason you have to be a martyr. When you “get time off,” head out for that expensive latte or pastry; buy a bottle of wine—just try not to drink it all at once; take a walk; treat yourself to some clothing item you’ve wanted forever but do so within reason so you’re not piling on debt, or go to a great art exhibit or concert when you’re supposed to be caregiving or working. Talk to yourself and say out loud that you’re doing the best job possible. You might say this to an ungrateful patient as well. Rally the support of your closest friends and family to come in and keep you company, as much as they add to the patient’s life.
9. Accept help. When offered by friends or family, accept it with certain guidelines. They might want to share food, “babysit,” or take the person out for a walk. Bring over a book or magazine or whatever, accept it graciously. And you can suggest something else. For example, if you don’t want another plant in the apartment or home that you’ll have to care for, speak up. Offer gratitude and then say what the person or you may need or want, within reason. “We have too many plants. How about a pair of warm socks?”
10. It’s okay to express how you feel. At one point after taking care of her husband for five years while she was working full-time, Margaret lost it and screamed at her late husband one night, “This is hard. At least you could thank me!” He did. She felt so much better and appreciated.
11. Never explain. You don’t need to share with nosey relatives and friends what you’re doing. And when some may say you’re crazy for being so selfless, you don’t need to respond, unless you want to. Barbara was asked indirectly why she was driving in so frequently and, as her mother declined, staying at her mom’s for days. She didn’t want to share with all, except for a few. Certain questions are best not answered or answered with a simple, “I’ll get back to you.” as the “Good Wife” learned to do on the popular TV show, and which Barbara began to echo.
12. Be a role model. And, yes, taking on a role can be a good lesson for friends and family. After Barbara’s daughters saw how attentive she was to her mother, one explained, “We’ll do it for you some day.” That wasn’t the reason Barbara did it, but it was nice to hear.