No Two Families Are Alike, But Guilt Is Universal

While every caregiving situation is unique, each offers common lessons 

By Leah Eskenazi
Originally Posted On January 16, 2014


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.

"You do so much for your mom. I should be doing more to help mine!" a friend said recently, as a group dinner conversation inevitably circled around to caregiving.

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.
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.
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.

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. 

Visit the Family Caregiver Alliance 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).