Becoming a full time 24/7 caregiver for someone with any chronic illness, including advanced prostate cancer is overwhelming. Most caregivers find that they stop their own personal activities, including those that give them personal pleasure. Caregiving means subverting personal needs in favor of the needs of the patient.
This situation often leads to the caregiver having feelings of resentment and then shame and guilt for having those feelings. A common caregiver response is that the patient’s needs far out trump the caregivers, so a caregiver feeling of being trapped or sad becomes unforgiving and selfish.
Caregivers often do not feel comfortable sharing these feelings and they become shackled by what I have heard referred to as the “Mother Teresa” complex. These feeling become a type of prison which will quickly trap a caregiver leaving them with what seems little or no exit point.
I have learned from the many people who have shared their experience that dying is hard work. But I have also learned that being a primary caregiver is right up there in difficulty with dying. When the loved one is gone the caregiver is left behind to deal with the sadness and the feelings of misplaced guilt and anger.
Being a caregivers you will experience many emotions; love, hate, acceptance, criticism, gratitude and rejection are among them. Caregivers can experience all of these in a single day, maybe in a single hour. Dying is hard work and so is caregiving.
My hat is off to all you caregivers. Your love, understanding, acceptance and forgiveness is unsurpassed. We can never say an adequate thank you or I love you. Do remember we love you and appreciate your helping us both as we live and as we die, even if we don’t say it.
Joel T. Nowak, M.A., M.S.W.