This is one article in a series about long-term caregiving.
For nineteen months my wife struggled with metastasized cancer. I was her primary, and most often only caregiver, other than the night sitters from 10 PM to 6 AM. I did everything except cooking for which I had no experience. We lived off of purchased prepared foods.
There were two major cancer surgeries (lung, brain). Chemotherapy. Radiation therapy. Trips to the ER after her numerous falls. Seven different physicians. Many doctor appointments. Wheel chair in and out of the house, and in and out of the car. Daily visits to her for five weeks when she was in special care.
At home, my nights were of interrupted sleep. Daily lists of meds and when to give them. Schedule sitters. Visits from a visiting nurse, and a speech therapist, and a physical therapist, and an open wound nurse and an aide who came to bathe her. On and on. It seemed endless. And unpredictable.
After she died, I collapsed physically. Still could not sleep,. I was still listening for her call for help. Still had no appetite. Wanted to sleep for days but couldn’t. I could hardly move. I was overwhelmed with tiredness. Had no energy to do anything. It finally caught up with me: the physical stress of nineteen months of constant changes and emergencies and demands. After her death, it was two years before I regained my health and strength. It was a miracle that I did.
Long-term caregiving can be VERY exhausting physically. Even worse is ignoring the signs of body distress and fatigue–poor diet, no restful rest, no down time, always on call, living in dread.
If you are a caregiver, do not do what I did, forgetting your body and its needs. If you know a caregiver, reach out and help her or him put self care first. As someone said in our Caregivers Support Group: “even caregivers bleed.” Often, I will say in our weekly support group, “Outlive the person you’re taking care of.”
About the Author
Hugh Burns is a Licensed Marriage and Family Therapist and an ordained clergyman in the PCUSA. Hugh graduated from Presbyterian College and Columbia Theological Seminary. He leads DPC’s Caregivers Support Group and has previously served as a Clinical Chaplain in a mental health center and a hospital. You can reach Hugh by email, at firstname.lastname@example.org.