The care and humanity of caregiving
Monday, February 24, 2020
Daniel leans over and gently kisses Sara’s head as she lays in the hospital bed. She is in the final few hours of life and her breathing has grown agonal and labored. “I’m here with you, Sara, and you are not alone,” Daniel assures her tenderly. For 10 years now, he has been by her side through all of the ups and downs of her journey with breast cancer.
Maria spots me as I enter her husband’s ICU room and breaks down in tears, taking my hand and pulling me in for a much-needed hug. Her husband Carlos was transferred down to the ICU after having become septic during his lengthy admission for chemotherapy to treat a recurrence of leukemia. She has been at the hospital for days now and looks exhausted and exasperated by this latest setback.
Frank guides Veronica through the produce section of the local supermarket. I spot them across the store and smile at his gentle, attentive way with her. I used to counsel them both when Veronica was first diagnosed with Alzheimer’s and they were adjusting to life with their new reality. Veronica is now more forgetful and dependent on Frank as evident by his need to help her navigate through the store.
Daniel, Maria and Frank are just three of the close to 40 million Americans providing care to a loved one. At any given time, 16.6% of all U.S. adults are actively serving as a caregiver to a person living with a disability or long-term illness like cancer or dementia. From a financial perspective, these informal caregivers provide unpaid care that amounts to $450 million per year. The figures are astounding. and they will continue to rise as the baby boomer population continues to age.
Caregiving is receiving more and more attention because of the growth in numbers, the impact on the U.S. economy, the psychosocial impact of caring for a friend or family member and the rates of depression, anxiety and distress among caregivers. Recent studies have demonstrated higher rates of anxiety, depression and unmet needs among caregivers, leading to a greater recognition of the need to assess and treat them along with those for whom they care.
Almost all of us will serve as an informal caregiver at some point in our lives. The relationship is an utterly unique one characterized by allegiance, empathy, protection, advocacy, witnessing and companionship. Many note that the care relationship is a mix of fulfillment as well as stress and burden. Creating space for all of these experiences is vital and professionals can make a tremendous difference by normalizing the positive and negative aspects of caregiving. To care is to sacrifice; to care is to become vulnerable; to care is to give; and to care is to bear witness to suffering.
Care can also usher in new meaning to a relationship. Husbands caring for wives often experience a new dynamic in their marriage. Adult children caring for a parent may find great satisfaction in being able to give back to a loving mother or father. Caregiving can also open old wounds and challenge already strained relationships. All of these experiences show the complex nature of supporting someone who is ill.
No matter the quality of the relationship or the perceived burden of caregiving, resources are becoming more and more available. Whether you are a caregiver yourself or you support caregivers, the following resources are invaluable. Take some time to peruse them and do not hesitate to lighten the load and enrich the caregiving experience by engaging these supports, for well-being and balance come from feeling heard, connected and cared for.
- Family Caregiver Alliance: www.caregiver.org
- Caregiver Action Network: www.caregiveraction.org
- Alzheimer’s Association — Caregiver Resources: www.alz.org/help-support/caregiving
- CancerCare Caregiver Resources: www.cancercare.org/tagged/caregiving
- "The Soul of Care: The Moral Education of a Husband and a Doctor" by Arthur Kleinman
- "Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End" by Tia Powell, M.D.
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