Webster’s New World Dictionary defines guilt as “a painful feeling of self-reproach resulting from a belief that one has done something wrong or immoral.”
Those are strong words, especially when used to describe someone who cares for a family member or friend in the last season of life. Guilt is an ugly emotion that, unless resolved, rarely results in anything good or sustaining. Guilt in caregivers often comes from within, but can also be imposed on a person. It can be imposed by the person who is ill and requires care. It can be imposed by friends or relatives. It can be imposed by society and societal expectations. Wherever guilt originates, it can be devastating to a caregiver’s emotional well-being.
This is a story of a man we will call “Harvey,” and his wife, “Susanne,” who cares for him. Harvey has many health problems ranging from kidney malfunction to congestive heart failure. His most visible and possibly most devastating issue, however, may just be his dementia. This dementia causes him to do things that would make his former-self appalled.
He forgets how to dress himself, so he gets frustrated and angry at things like buttons and zippers. Susanne takes the brunt of this frustration. He forgets to open the toilet and the result is a mess. Susanne cleans the mess and Harvey. The clock has no meaning for him anymore, so he has Susanne up at all hours of the night and early morning. Susanne is exhausted. She tells me she doesn’t know how much longer she will be able to care for Harvey at home. And then she sobs.
The guilt takes over and pours out. In between sobs and hitches, she says, “I can’t promise him that I will always keep him at home—I can’t! But I have promised myself that I will keep him here. He has lived here for 85 years—never anywhere else—how can I take him somewhere else? How?”
The guilt that consumes her is almost visible in its shroud of hopelessness. All I can do is hold her while she sobs and assure her that any decision she makes will be for Harvey’s well-being and out of love.
Another story …
Irene has been active through her life and an indelible influence on her children. She has lived through the death of her beloved husband at a young age, and raised four children in the time before any help was available for parents trying to make ends meet. Irene worked hard and has never complained or asked for much at all. Now, she is very sick and her four children take turns caring for her.
Irene reaches a point when she can no longer swallow and is unable to take food, or even water. She sleeps peacefully with all four children at her bedside. There are tears. There is laughter. There are memories shared and made. And there is guilt. The four have talked about it and now one of them speaks, “We want to tell Mom to let go, to die, but we feel guilty. We feel guilty because we want to keep her here. We will miss her so much. We feel guilty because if we tell her it’s OK to let go and she does, then it will feel like it’s our fault that she died.”
In this situation, I can help these four wonderful caregivers walk through their guilt to a feeling of empowerment. Telling their Mom it’s OK to die becomes a life sentence, instead of a death sentence. It becomes a gift of sending, instead of holding back.
Most guilt is self-imposed. But, guilt is also affected by factors outside ourselves and often out of our control. Harvey’s frustration and anger feed Susanne’s guilt. She also listens to the voices of tradition and heritage—powerful voices, indeed. Irene’s children’s guilt comes from an inner struggle to hold on or to let go. Her illness and impending death bring that struggle out into the open where it first grows, but then can be talked about and resolved.
Caregiver guilt is a natural human reaction to the stress of caring for a loved one whose needs have changed so very much. The best way to deal with this guilt is to talk to a trusted friend, pastor or hospice professional. Guilt thrives in the dark. Once it is brought out, into the light, guilt can often be resolved to help caregivers through difficult decisions and difficult challenges.
If you are are caring for a loved one who is nearing the end-of-life, and need support, please contact us. We can help, more than you may know.
Janna Kontz is a chaplain at Hospice of the Red River Valley.
Other posts that may interest you:
Caregiver Burnout: Signs to Watch for in Yourself and Others
Signs that Death is Near: A Caregiver’s Guide
End-Stage Alzheimer’s Disease: Tips for Caregivers
Coping with Another Person’s Suffering
Ten Tips to Help You Handle the Challenges of Caregiving
Dear Santa … Top 10 Gift Ideas for Caregivers