I have been spending a fair amount of time thinking about the pain and wonder of care giving for the disabled and elderly. I recently placed my 45 year-old brother, Dan, in a nursing home. He has antiphospholipid antibody syndrome, or a disease that causes blood clotting. He has had at least 28. Despite this catastrophic loss of brain tissue, he still walks and talks, but is cognitively impaired and legally blind. He needs 24-hour support and care.
My husband and I became his caregivers after my mother's death and we came to know the agonies and joys of taking on this tremendous responsibility. My mother used to complain about how hard it was to care for a person with Dan's level of needs. I would frequently offer gentle support, but I would also make suggestions and sometimes admonish her for behavior that occurred between she and my brother that I thought was unseemly. After caring for my brother for 9 months (a short period of time relatively speaking), I now have a whole new appreciation for the struggle that she encountered. She would talk about her guilt and responsibility. She would follow suggestions to place him in a nursing home with reasons of family values and guilt given as to why she could not place him. I didn't understand this.
I learned, after my mother's death, that she was spending less time in the home as she felt less able and willing to care for this person she so dearly loved. She was becoming more withdrawn, experienced increased stress, and grew more depressed (caregivers under distress have a 63% increased risk for mortality over non-caregivers; Schulz & Beach, 1999). She had stopped talking to the family about what was happening for her. I now know her struggle and regularly ask her forgiveness for not understanding her situation. When you take on the responsibility of caring for another being who has tremendous needs and whose life can be in a precarious balance between life and death, you take on a new kind of stress that can only be understood by experiencing it.
My husband (my brother's main caretaker) slowly sunk into a psychological funk. Feeling as if he could never be away from the home for too long and having feelings that if something went wrong he would be blamed for the incident. My husband needed help, and when not working, I became the caretaker, thus never really having any time off. I became isolated, frustrated and thought my life as I knew it was over....and it was.
Caregivers make tremendous personal sacrifice. They have to fight for time alone, down time, peace, as sense of self. In some way it seems as if the caregiver and the caregivee become one. And the emotional and psychological roller coaster that comes along with that is quite difficult. After this experience, I can only extend the deepest appreciation for my mother and caregivers everywhere.
Now this is not to say that care giving doesn't have its upside. Dan made my husband and I laugh and reflect, he made us appreciate our own health and the importance of family and friends. We are indebted to him for that. But we also experienced great struggle. We encountered levels of frustration and guilt that we had not experienced before, at times we felt our lives had been stolen and we felt remorseful about our desires to have him gone - not dead - but gone.
After months of painful struggle and emotions that are difficult to describe, we made the decision to have him placed in nursing care. This experience contained both relief and dread. My husband and I both felt a strong sense of being all twisted up inside -- were we doing the right thing? Have we offended our values? Have we abandoned the one we love?
All in all, we currently feel that only time will tell. We have our home back and we can feel the stress slowly beginning to fade - yet, we both feel an itchiness, a gnawing sense of guilt and duty. We are both focused on being mindful and accepting of our own and Dan's feelings. We are keeping our values squarely in front of us by making sure he is getting good care, planning visits and addressing his needs. But we are also making sure we are taking care too, a self-permission that was difficult to give. We love Dan, but can only continue that love by also caring for ourselves. I hope that other caregivers will do the same. . .
See Robyn's Web site and her book The Mindful Couple and Acceptance and Commitment Therapy for Posttraumatic Stress Disorder.