Guilt Zaps Caregivers Too

Fatigue, fear & a life on hold add up to painfully mixed feelings for those providing care.

For the last year of Bill Lasher’s life, his only forays outside the house were to visit the doctor and to go out to eat. His wife, Beth, who cared for him until his death in 2009 from cutaneous T-cell lymphoma, recalls how eagerly he looked forward to her coming home from work to take him out. Beth, a counselor at an elementary school near their home in Dallas, also remembers her exhaustion from sleepless nights and full days.

“It was so important for him because it was the only way for him to get out of the house and get a normal environment,” she says, “but there were times that I … couldn’t do it. I felt guilty because of how important it was to him.”

As the treatment of cancer has increasingly moved into the outpatient setting, the number of families who add caregiving to already busy lives has grown to tens of millions. Guilt such as Lasher’s is all too familiar, says Eric Cohen, RN, OCN, program manager at Life With Cancer in Fairfax, Virginia.

“The person left behind also has guilt,” Cohen says, “as if somehow they failed their loved one. They think that they could have done it better, or gotten them to the doctor sooner, or ask [themselves] if they chose the right physician.”

According to a study in the December 2008 journal Psychosomatics, guilt occurs as a result of feelings of not living up to or violating one’s own internal values or standards about how to live or behave. In the cancer journey, that often comes from feelings of inadequacy in the perception of the care provided a loved one.

Indeed, the study quotes earlier research findings indicating that the shift in relationships from mutual exchange of helping to one person caring for the other can result in levels of psychological distress for the caregiver that are comparable to or greater than that of the patient.

The person left behind also has guilt, as if somehow they failed their loved one.

And, while the study found no differences in gender in caregiver guilt, those who were employed had higher levels than those who weren’t, with the highest risk group for caregiver guilt being younger caregivers such as adult children.

Guilt can also surround the difficult discussions around end-of-life issues such as Do Not Resuscitate (DNR) requests.

“They feel guilt if they didn’t have the discussions before their loved one died, and then they feel guilt after they die because they never had the conversation,” Cohen says.

Cohen encourages caregivers to find support programs where they can talk with others and be reassured. For Lasher, healing has come in the form of a dog she rescued named Beasley that she is training as a therapy dog. “Bill loved the therapy dog that came to the hospital and said he wanted to do that after he got well,” she says. “I am doing this in his honor.”