I’ve been a caregiver for more than 18 years: nine years as my mother’s caregiver, seven years as my twin grandchildren’s guardian/caregiver, and two years as my disabled husband’s caregiver. This experience has taught me that caregiving isn’t for wimps. We need physical strength and mental courage in order to be caregivers.
Caregiving is challenging.
Time question. Although you understand your loved one’s sudden or chronic illness, you aren’t a fortune teller, and don’t know how long she or he will live. Therefore, you don’t know how long you will be a caregiver.
Life on hold. Many family members put their lives on hold in order to become caregivers. Dreams that seemed so clear a few weeks ago begin to fade. Gail Sheehy, author of Passages in Caregiving, describes caregiving as “a collision between conflicting stages of life.” (p.12 )
Financial worries. Many caregivers have the same question, “Will I have enough money to pay the bills?” Health insurance and government regulations make it difficult to answer this question. And the bills keep coming.
Caregiving has pitfalls.
Anticipatory grief. Everyone experiences this grief—a feeling of loss before a death or dreaded event happens—yet many have never heard of it. Feelings of sadness and loss can take over your life. You feel like a black cloud is following you. Worse, people ask why you’re grieving if nobody has died.
Burnout. According to the American Institute of Stress, burnout is a progression of feelings that goes from enthusiasm, to stagnation, to frustration, and to apathy. Never-ending caregiving tasks contribute to burnout and it develops slowly. Eventually those with burnout lose their compassion.
Compassion Fatigue. This is a form of burnout and it comes on suddenly. You’ve hit the caregiving wall and don’t think you have the strength to do it anymore. In contrast to burnout, those with compassion fatigue retain their compassion for others.
Ambiguous loss. Pauline Boss, PhD, pioneered the research on this topic and coined the term. According to Boss, ambiguous losses lack a clear ending. As she writes in her book, Loving Someone Who has Dementia, “Loving a person with dementia in real life . . . has no clear ending, and that is our real challenge—to stay empathetic and connected in a real life story that remains ambiguous.” (p. 84)
Caregiving affects caregivers.
Fatigue. If you get up in the night to help your loved one, getting enough sleep is impossible. Interrupted sleep isn’t restful sleep. Before you know it, you are in sleep deprivation.
Stress creates health problems. According to a Mayo Clinic website article, “Stress Symptoms: Effects on Your Body and Behavior,” stress can cause headaches, muscle/chest pain, upset stomach, anxiety, over-eating, under-eating, and other things.
Caregiving is a different journey. You may think caregiving is a linear journey, but author Gail Sheehy sees it differently. As she notes in Passages in Caregiving, “It feels like we are going around in circles, thinking we have resolved a crisis only to have it return or be superseded by a different, unexpected crisis.” (p. 21)
How can we cope with these factors?
We can take care of ourselves, ask for help, keep a sense of humor handy, model kindness and respect, continue to learn, fine-tune communication skills, and savor the time we spend with loved ones. Caregiving is love in action—always has been, and always will be.