Not every aspect of caregiving is burdensome – the role also provides a strong sense of intimacy.
"There are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers."
These wise words were said by former First Lady Rosalynn Carter. There are approximately 65 million family or friend caregivers in the United States – 29 percent of the adult population. You yourself might be a member of a large but barely recognized group. It's time we opened the door on yet another closet, and help people who are members of the same community find and support one another. This support is key in finding your way in the , which can be lonely, isolating and overwhelming.
Who are the Caregivers?
You might know a co-worker who rarely speaks about taking care of her elderly, frail mother at home. Perhaps a friend cares for a , but keeps his struggle private. Or a relative takes care of a child with complex special needs, but is unable to share her feelings of exhaustion and even resentment, for fear of shame and/or criticism.
I hear these stories day after day. I recently encountered a mom and sister of a patient who had been on life support for many weeks. They were walking down the street near the hospital. Their bedside vigil had been 24/7. Now, thankfully, the patient was stable but still very ill.
Just days earlier, I encouraged these devoted and frightened family caregivers to pay some attention to their own needs – sleep, getting outside to take a walk, taking a much-needed break to have a cup of coffee, talking to other people, re-fueling – so they could resume their roles at their loved one's side, holding her hand and encouraging her with their words and touch.
Now I was happy to see them outside on such a beautiful day. I greeted them and commented on how cheerful they appeared.
"Well, I feel kind of guilty saying this, but we're on our way to the wine store," the mother told me. It seems they were looking forward to eating some good Italian food when they realized they had no wine. "I'm so glad to hear that," I responded, knowing that this tasty meal would re-energize them to continue their caretaking.
But people are often reluctant to take some time away from their loved one and attend to their own needs. I find it's astonishingly common for caretakers to sacrifice their own needs for those of a sick loved one. Many people assume it's the right thing to do, and feel those around them expect it.
Recently, the wife of an 80-year-old cardiac bypass patient confessed to me that she had gone to her chiropractor and stayed for over an hour in her "self-pity mood." In the absence of someone to share her stress and worries with, she told her chiropractor in detail what she had been going through. After leaving the office, she turned back to apologize, feeling guilty for burdening someone with her concerns. Her actions were quite understandable – but perhaps she can give up the strong "front" that she feels she needs to display, and risk making herself vulnerable to a friend or relative that she can trust with her pent-up feelings. She did not realize that venting was not only what she needed, but also good for her sick husband.
People need to give themselves permission to take a break. It's important for caregivers to retain a sense of self, and not get lost or forgotten as they journey on in their caretaking role. Everyone needs a respite, a time out and a moment to take a deep breath. At this time of year, as the days grow longer, it's wise to spend time outdoors, and enjoy some daylight outside the confines of the hospital, rehab facility or home environment. It's remarkably easy to lose focus of one's own requirements, furthering already heightened .
Finding ways to nourish your own soul in whatever style works for you can restore some semblance of a "normal" routine and provide balance while you are immersed in caretaking. You have a right to attend to yourself while juggling all the many balls you have in the air. Your dedication to yourself, as well as the person you are caring for, will benefit you both.
It may be helpful to create an "I'm Taking Care of Myself" list, a reminder of activities that contribute to a sense of calm. Every is unique – no two are alike, and each person will respond to a different modality.
Caregivers should reflect upon what has made them in the past. Here are some suggestions.
Physicality works for some:
Connecting with others may be restorative:
Find enjoyable outlets:
Soothing activities:
If your caregiving role involves a loss of sleep, consider whether there's a family member or friend, neighbor or member of the faith community who might be willing to step in for a night. Sleep deprivation can lead to additional problems that a night off might stave off.
Hopefully, by not ignoring your desires, you'll feel an increase in the psychic and physical strength needed to continue with your responsibilities as a caregiver. The goal is to feel more patient, less frustrated, more compassionate and less resentful. Without these small recharging pit stops, the caregiving role can have the capacity to burn you out – leaving you depleted and impeding your ability to continue.
Finally, it's equally important to acknowledge that not every aspect of caregiving is burdensome. The intimacy that this role provides offers the family caregiver an opportunity to share some very unique moments with the . Exchanging stories, life reviews, reconciling old conflicts and wounds, or just holding hands and simply being with the person: These times can provide fertile ground for truly loving experiences.
At a particularly poignant funeral I attended recently, the adult son of the deceased ended his eloquent eulogy to his dad with these words, "Thank you dad for allowing me this gift of taking care of you."