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I’ll just say it: I think we need a National Caregivers’ Day. Not only should they receive boxes of chocolates and bouquets of flowers, but friends should step in and take the entire day for them, if they can.
It’s hard to imagine any job more exhausting, more tedious, more without a moment’s relief, than constant caregiving. And with the rising numbers of elderly and disabled, caregiving is falling upon more and more shoulders. If you haven’t already experienced it, you may. As a matter of fact, I feel such admiration for this unheralded group that I wrote a tribute song to caregivers for my upcoming musical about cancer.
And this demanding task doesn’t compare to all the young parents whose healthy babies interrupt their sleep, and who need everything done for them. Babies are light weight and easy to pick up. Babies have a learning curve and eventually become independent—they improve and it gets better. When someone has a progressive disease, they diminish and it only gets worse.
I recently learned of a woman whose husband had Lou Gehrig’s Disease, or ALS. As you may know, ALS affects motor neurons in the brain and spinal cord, making muscles weaker, leading to progressive paralysis. Today there is no prevention or cure. For three years this woman, even with some daytime nursing help, was her husband’s main caregiver.
And it was burning her out. Day after day she devoted her hours to the care his physical body’s needs, including a breathing machine. And, as tiring as it was, when night came that’s when the real work began. Sleep-deprived and growing irritable, she soldiered on, committed to the obligation she felt to care for him. He had stopped speaking and even his eyes looked vacant. She felt sorry for him and sorry for herself.
Basically, she says she forgot she was his wife. Then one day she remembered how much she loved him, and she decided to show it a different way. She patted him. She kissed him. She spoke to him the way she used to. She told him stories and talked about their friends and family.
And a crazy thing happened. He started to speak again. When his friends came over, they were stunned that he was able to have conversations with them. They talked about their children, news of the world, golf.
Even in his last stages of the disease, he talked. The simple belief that he was loved and cared about made all the difference. Both he and the woman were blessed with this gift because of that key decision she made, to remember how much she loved him, and to show it. It gave them a better ending when the time came. They were both strong in their faith and she didn’t feel remorse. She knew it was his time, and she knew they had made the most of their remaining days together.
Couples who maintain the honor and love of a happy marriage not only give dignity to the ill partner, but to the caregiver who gave that respect. Service enlarges our souls, and so often when one partner passes, the other feels completely lost, so accustomed to giving and now not having that blessed opportunity.
How often do we breeze through our busy days without actually connecting, without making sure our loves ones know we truly do love them? Lack of connection, the absence of feeling you matter to somebody, has been identified as a source of depression, addiction, violence, and a host of other emotional problems. I’ve been seeing articles about the importance of hugging, singing lullabies to babies, reading to our children—the internet is replete with studies about the importance of connecting.
Caregivers must also give themselves permission to meet their own needs. In her book, Self-Compassion, The Proven Power of Being Kind to Yourself, Author Kristin Neff, Ph.D., suggests caregivers avoid compassion fatigue by getting a massage, taking a nap, going to a comedy club, listening to a soothing song, stretching, taking a walk, dancing, and so on. As friends of such over-extended servers, we can offer to spell them long enough for them to re-charge.
Adults need affection, as well. Surely, if we can turn off our devices at the temple or when we go to the movies, we can turn them off for a couple of hours to interact with the people we love most. If someone in your life has been sullen or has pulled away, or just seems frustrated with life (and that’s all of us at various times), let’s take notice and be there to listen and understand. Let’s extend the very love the Savior asked us to, and be the kind of caregiver he was. Yes, we attend to physical needs. But we should also attend to the heart and soul.Hilton’s LDS novel, Golden, is available in paperback and on Kindle. All her books and YouTubeMom videos can be found on her website. She currently serves as an Interfaith Specialist for Public Affairs.