No Two Families Are Alike, But Guilt Is Universal
While every caregiving situation is unique, each offers common lessons
Leah Eskenazi, MSW, is the director of operations for the Family Caregiver Alliance, whose mission is to improve the quality of life for caregivers through education, advocacy, research, service and support.
One woman at our table had just described moving her mother to California from New York to better oversee her declining health. She described her mom as a lifelong "free spirit," highly emotive, extremely intelligent and, unfortunately, never concerned with saving money. Her new apartment in an assisted-living building and the extra personal care she needs have been paid for by her daughters, depleting their savings and likely forestalling their own retirement plans.
(MORE: Should Your Family Pay You to Care for a Parent?)
Another friend talked about how she rushed to be with her dying father, who was in the last stages of Alzheimer's disease. His third wife, whom my friend described as "a saint," welcomed her support. While waiting for her dad to pass, though, my friend found out that her mother, who lived alone in another state, had landed in the hospital after a fall. Forced to choose between equally compelling emergencies, she went to the bedside of the parent who required immediate help, the one who had always been there for her when she was growing up.
Yet another member of our group told of driving six hours each month so she could provide respite to her brother who, having nowhere else to live, had become their 88-year-old mother's primary caregiver by default. This friend has a large family, but habitual alcohol use had taken its toll on the siblings' ability to care for their mom. She regrets not being able to better keep her family together and detests their regular squabbles over their anticipated inheritance.
How is it that, despite the uniqueness of our caregiving situations, we all share the guilt that comes from believing we are not doing enough?
The Feelings We All Share
Ask 100 people why they became caregivers and you'll get 100 different answers, but duty, love, safety and support are common themes:
- "My mom fell and broke her hip, but my sister who lived closest to her was battling breast cancer with two young children at home."
- "When my step-dad's onset of wandering forced his neighbors to help him return home almost daily, they demanded that I do something."
- "My spouse returned from a tour of duty in the military with a serious head injury and post-traumatic stress disorder."
Each friend's experience is unique because caregiving is so complex. It's about human relationships. It's an intricate dance performed every day, in thousands of different ways and places, between the caregiver, the care recipient, extended family, health practitioners, employers and neighbors. And each person in the mix, even within a group of siblings, has a different set of morals and values as well as a singular relationship with the patient. Caregivers, then, need and deserve to know that there is no one right way to perform their role and that they do not have to navigate this journey alone.
(MORE: How to Hold a Family Meeting to Plan Care)
Our team at Family Caregiver Alliance has crystallized some insights into those things that most commonly mold our experiences, sometimes subtly, sometimes forcefully:
- Duration Caregiving can last from less than a year to 40 years or more. In small doses, it's manageable. But having to juggle caregiving with the demands of your own life long-term can become a major challenge.
- Available assets When a care recipient has quality health insurance and the resources to pay for housekeeping, personal care, transportation and assisted living, it can ease many caregiver anxieties. Yet the presence of such assets does not always mean there's an absence of stress. All too often, family squabbles over how money is spent on caregiving can result in resentment ― and sometimes lawsuits. Expectations of inheritance or misappropriation of funds can scar family relations for life.
- Lost income Caregivers face a loss of income, as well as employer-based medical benefits, if they reduce work hours or leave their jobs. They may also deplete savings to pay for caregiving expenses and jeopardize retirement income because of decreased contributions to pensions and other funds.
- Support Most caregivers are ill-prepared for their role and have little or no support. More than a third provide intense care while suffering from poor health themselves. It's not unusual for a caregiver to seek out assisted housing for a family member because of their own physical limitations or inability to provide safe care.
- Illness demands Caring for someone with Alzheimer's disease, other dementia-related conditions or a brain-impairing disorder can be more stressful than aiding someone with a physical impairment. It can be a 24/7 job for many years due to the unpredictability of the care recipient's behavior.
- Location Caregivers in rural settings often face limited availability of home healthcare services, too few family practice doctors and virtually no convenient access to medical specialists except via video conference. The lack of public transportation can also compound the social isolation experienced by caregivers and their loved ones; this is only made worse by seasonal weather conditions that make roads difficult to navigate.
- Personal relationships The nature of a parent-child bond can influence an adult child's willingness to provide care and comfort. Giving back to a parent "who was there for me" is a much different experience than it may be for a child raised without affection or emotional support. That isn't to say that a negative relationship dictates an impossible caregiving situation. A sense of duty to a parent, challenging sibling or even ex-spouse can supersede a historically poor relationship and even offer an opportunity for healing.
- Cultural context Families bring their own histories, traditions and rituals to caregiving. In many cultures, there are strong assumptions that adult children will become caregivers, especially within groups in which daughters or daughters-in-law are expected to assume a primary caregiver role for aging parents.
Above All, Keep Talking
Recognizing and familiarizing yourself with the factors that shape your caregiving experience can give you much-needed perspective on your particular situation and help you find a way to be kinder to yourself, which many find to be the essential factor in successful coping.
(MORE: Are You a Caregiver or Just a Good Child?)
Like myself and my caregiving dinner companions, all of whom are baby boomers, you may find that just talking about your situation brings essential insights from others who are walking a similar path or will do so in the near future. Comparing notes can help you clarify, modify and improve your own experience. Your friends' paths will not be exactly the same as yours, but you can still reach out for help and guidance when you need it and offer it to your peers as well. No one should do this alone.
In December, the Family Caregiver Alliance will launch an updated website with all of its caregiving resources, as well as new tools to connect caregivers with each other and with specialized resources. Visitors will be able to locate services and support within their states through the group's Family Care Navigator and search for fact sheets, articles and advice based on their specific situation (Pre-Caregiving, New to Caregiving, Situational & Long-Distance Caregiver, Daily or In-Home Caregiver, Advanced Illness Caregiving or Post-Caregiving).