Becoming a caregiver for someone aging or seriously ill is usually something we never expect to experience. It's often an unfamiliar role that can become overwhelming. It may consume increasing time, mounting financial resources, and management of medical decisions or procedures that we never anticipated we could handle. We can become so swept up in the process of intensifying care that we don't have time to consider how it may have upended roles we used to play before illness or age necessitated our help. In fact, we may become caregivers so gradually that we don't even realize that's who we are now. Caregiving can slowly transform our relationships into bonds built around illness or aging that nurture a compassion we never knew we possessed.
As we become caregivers we naturally direct increasing amounts of energy to the support of another. When the needs of another are at a maximum it may seem illogical to put energy into wrestling time for ourselves but creating time for self care is the most important thing we can do to stay grounded and become better caregivers. Time for ourselves helps us recharge and balance. Time away from our caregiving situation helps us gain perspective. Support yourself by researching the problem that drew you into this role but, more importantly, support yourself by turning to friends, seeking professional support groups, reading about the experience of others in your position, and insisting on making personal time independent of your new role. Maybe that's as short a break as watching a movie with friends, taking a walk around the neighborhood each day or simply enjoying a long shower. Self care ultimately enables us to bring our best to the aid of someone else.
As we're drawn into a caregiving interrelationship with someone, usually a loved one, it's common to have feelings of isolation. Though we may feel alone, at times, in our circumstance, it may surprise you to know that 42% of the U.S. workforce cared for an aging parent or friend in the past five years! In fact, half the U.S. workforce expects to care for aging parents in the coming five years and one in four of us aged 49-64 currently face the maturing experience of becoming caregivers for ailing parents or partners and injured, sick children and friends.
As more and more of us engage in caregiving, statistics emerge that sketch a very human picture of the average caregiver. She's employed and entering midlife. She's white, Asian, Latina, or African American. According to an AARP Family Caregiving report, she cares for her mother after work and offers at least 20 hours a week in support. To honor her responsibilities she may change her own life. She may cut back on working hours, change jobs, or retire early. And, besides the immediate strain, she'll face consequences far into her life from her decisions and experiences right now. She may later face impacts on her earnings or career trajectory and trouble with her own health and well being.
Her caregiving journey will include main transitions: starting out/realizing help is needed, learning how to help, giving increasing help, and letting go. Each stage carries learning and new awareness and every transition brings more maturity and greater emotional investment. It isn't uncommon for both patient and caregiver to seek mental health support to manage the strong feelings that they'll encounter. Caregiving is transformational. The website CAN, offering caregiver resources catered to particular circumstance, was the inspiration of two women coping with their own roles as family caregivers.
If you're becoming a caregiver for an aging or seriously ill loved one you're entering a new world of change. You're witness now to the frailty of someone you love and you live in an environment of increasing vulnerability and need. You may come to know exasperation and heartbreak, exhaustion and hidden wells of strength. You may experience a range of feelings or have times you can't imagine life afterward and times you feel like "afterwards" will never come. Your caregiving relationship is unique yet aspects of your circumstance are shared by millions of people in the country. I hope you meet people with the capacity to understand and have friends who will listen and offer support. When you become a caregiver you step up in someone's life with the profound gift of time and love. Remember to care for yourself and you'll find the energy and strength you need to go the unknown distance with someone in need.
Update 3 March: Because caregiving experiences can be drastically different depending on the circumstance and your relationship to the person you care for I'm including a few strong links on the subject with more targeted focus.
A wife and psychotherapist talks about the sometimes special strain of caring for a husband.
Caring for a spouse after the age of 70. How does it differ for men and women?
Supporting a friend who has cancer with light caregiving.
Good tips on how to talk with and help friends that are coping with cancer (and terminal illnesses).
Children who become their parent's primary caregiver.
Great set of blogs about caregiving at the end of a loved one's life. These blogs cover a range of topics including life after caregiving and what to do when caregiving experiences or your feelings about them become too intense to manage.
Update May 2013 This site, created by a couple who both faced serious health challenges, writes: "If caregiving was classified a sport, it would be an EXTREME sport because it requires dedication and commitment second to none."
Update June 2014 Very good article on tips for avoiding caregiver burnout. The article is specifically addressing Alzheimer's caregivers but the tips apply to most people who are in home caregivers.
Update March 2015: Lovely and honest tribute to family caregiving
Update May 2016: "The dollar value of the informal care that family and friends provide for older Americans totals an estimated $522 billion a year—more than total Medicaid spending ($449 billion in 2014), according to Chari and colleagues (2015)." Just one of the findings of new research on family caregivers.
