A family caregiver is typically an unpaid family member, partner or friend providing physical, emotional or social support to someone experiencing health challenges. AARP and the National Alliance for Caregiving estimate that there are 63 million family caregivers in the U.S.. The majority are women, and more than 90 percent are caring for adults.

Despite showing up to care for a loved one, almost 70 percent reported feelings of guilt in one survey.  Guilt is a universal emotion and involves a negative self-perception based on a deep sense of responsibility. It can be an uncomfortable feeling of regret or remorse and implies having a moral set of standards and expectations. Did I do enough? Am I patient enough? Did I let them down? Maybe a promise made (like keeping a loved out of a nursing home) could not be kept.

Guilt can be triggered by a variety of circumstances between a caregiver and the person receiving care, or even among the extended family. Every family has their story, their challenges and strengths, and relationships can be tested when there is a serious health condition and a loved one needs help.

The need could be short-term or extend over many years. It could involve occasional assistance with groceries and finances or daily personal care and medication management. More than 50 percent of family caregivers are still employed, and roughly a third are also raising a family.

When stretched thin, even a caregiver’s best may not be enough. When a difficult decision needs to be made, a perfect solution may not be available, and good intentions can collide with real-life limitations.

Impact of guilt

When stressed and exhausted, thoughts tend to become negative, and feelings of resentment, anger, and inadequacy can surface, affecting not only the caregiver but those around them. A long list of “coulda-shoulda-wouldas” can evolve into a pattern of harsh self-judgement and the work becoming thankless and debilitating.

If these feelings persist or worsen over time, this can lead to caregiver burnout. In addition to the emotional impact of burnout on a caregiver, there can be physical symptoms, such as sleep disruptions, changes in appetite or weight, fatigue and chronic pain. At the extreme, anxiety, depression, and feelings of hopelessness can make it difficult to perform normal daily activities.

When a caregiver role ends due to a death or a move to a facility, something called “post-caregiver syndrome” can be experienced.  Along with grief and loss of purpose, previous feelings of guilt may become worse or new ones surface. Feeling a sense of relief from caregiving responsibilities can also fuel a sense of guilt.

The interpersonal relationships

The underlying relationship with and the expectations of the person requiring care can also contribute to the potential for feeling guilt. This needs to be considered (and may require another article). The care being offered may be greeted with gratitude, or there may be resentment and resistance to any offers of help.

Seeing the need but feeling ineffective and powerless to intervene can certainly lead to frustration, concerns for safety, and guilt. If caring for a parent, family dynamics can be ingrained and re-surface. Maybe guilt was a motivator during childhood to keep order and control. Comments like, “After all I have done for you,” might be one extreme.

On the other hand, the wish to avoid being a burden can delay admitting that help is needed and bad things can happen, including caregiver guilt for the results.

When caring for a spouse, conflicts in the relationship can make the demands of caregiving more challenging and add to regrets. Some caregivers have shared that they wish they had spent less time on the tasks and more time just sitting, holding the hand of their loved one.

Not all guilt is negative, however, as it can also provide a clue between people who care about each other to make things right through communication, apologies or compromise. It serves as an internal guide to follow personal beliefs and values and avoid harm to oneself and others.

Coping strategies

The opposite of this critical self-judgement is self-compassion, which means taking responsibility for one’s feelings and actions without assigning any blame or shame. Recognizing that one is suffering, followed by the reaction to act and get support, is key.

What are the underlying beliefs that are feeding into any sense of guilt and remorse? Maybe they are not realistic and can be reframed. Shifting this self-talk and re-evaluating expectations may be the goal.

The turning point is to admit that even doing one’s best may not be enough, and it is time to set boundaries and share the load. When possible, there needs to be an honest conversation with the individual requiring care to discuss the situation, the feelings involved, and the options. Be prepared with the options. 

A caregiver support group can be incredibly helpful as a place to share these feelings with other caregivers who understand the role and can validate them. Realizing that one is not alone with these thoughts, connections can be made and stories told in a safe place.

Local groups can be found through the Alzheimer’s Association, the National Alliance for Caregiving, and the Family Caregiver Alliance, among others.

Build a support team if possible. Are there tasks that can be delegated or additional resources that can be accessed? It may be beneficial to take a “time out” to get a fresh perspective. Find ways to refuel through exercise, getting enough sleep, healthy nutrition, and continuing to socialize.

Admittedly, not all these suggestions are possible, but there are resources out there.  To find relevant resources for Rhode Island caregivers, check out the website for RI Elder Info at: rielderinfo.com/resources/for/caregivers/

The tricky piece is finding the right person, time or place to share and better understand these feelings, ideally before they become overwhelming and cast a shadow on the whole experience of caregiving. It may be enough to talk it through with a friend or colleague or it may take professional support.

A sense of guilt can simply mean that someone cared, not that they failed, especially when there were limited or no perfect options and they did the best they could.

Bonnie Evans, RN, MS, GNP-BC, GC-C, lives in Bristol and is a geriatric nurse practitioner, End of Life Doula, and certified grief counselor. She can be reached at bonnie@bonnieevansdoula.com.