En español | "It was so hard to be with my husband at the end. It was a relief when he finally died," the 80-year-old wife confesses, a month after her spouse finally succumbed to a slowly spreading lung cancer.
But then she adds, with a stricken look, "I feel terrible about feeling relieved. It's as if I wanted him to die. I didn't!"
She pauses again before saying, quietly, "Not really."
Her words reflect the uncomfortable mixture of feelings — mostly sad, sometimes mad, but a little glad — that many family caregivers struggle with after a care recipient dies and caregiving suddenly ends.
The relief is real. Few caregivers miss having to be on edge all the time, awaiting the next cry in the night, a fall or some other medical emergency. Few miss the anguish of seeing a loved one suffering and being unable to provide a remedy. With the care recipient's death comes greater freedom and the leisure time to enjoy grandchildren, old friends and hours absorbed in a book or lingering over coffee.
But the average caregiver also doesn't shout these sentiments from the rooftops, for fear of feeling guilty or of being misunderstood. Just when she should be patting herself on the back for a job well done, she instead beats herself up for feeling relieved. Worse, she may be concerned that, consciously or subconsciously, she wished her ill family member dead and that that wish had the magical power to somehow hasten his demise. These feelings can complicate her grief and delay her post-caregiving adjustment to a less stressful and more contented life.
It is difficult to resolve the conflicting emotions at caregiving's end. But here are some ideas for alleviating the guilt they often cause:
Relief is earned
It's not just that the caregiving work is wearying — especially when it goes on for months and years — but that it often takes caregivers away from other life pursuits of great importance to them. They live in a constant state of tension, comparing who they were and how they spent their days before with the person they've become and the duties that now fill their hours. When those duties end, that tension abates as they contemplate resuming cherished activities and roles they'd set aside.
Relief is normal
When a caregiver accepts that harboring some negative feelings about caregiving (not the care recipient) is normal and expected, she is more likely to feel comfortable with the relief. Self-acceptance — for having done the best she could do under challenging circumstances and for being allowed to feel whatever emotions she feels about the experience — is the best buffer against guilt. That also means accepting that it is normal to feel contradictory emotions when the work of caregiving is finished. Upon learning that her husband, who had advanced dementia, was being transferred to a hospice unit to spend his last days or weeks before dying, a wife said plainly that she felt "sad relief."
Relief is not forgetting
Feeling relief when caregiving is over doesn't mean the caregiver is ready to throw a party to blot out the past. She can savor the time she spent with her dependent — even if she is openly pleased that she no longer has to face the daily grind and drudgery of providing him with further care. Some caregivers will try to honor the memory of the entirety of the care recipient's life (not just the last years of illness) by finding greater purpose and enjoyment in living. "I know he would want me to go back to volunteering at our church," said one caregiving wife.
Relief is not regretting
When a caregiver rejoices at the completion of this role, it doesn't mean she is sorry she chose to take care of an ailing loved one; rather, it means she is happy to have reached the finish line of a grueling marathon that she wasn't sure she had the heart and toughness to complete. It's not only relief that the race is over; it's pride that she ran a good enough race to fulfill her commitment to the end.
Barry J. Jacobs, a clinical psychologist and family therapist, is a member of the AARP Caregiving Advisory Panel.