In 2013 the connection between my husband’s Dacron descending aorta and the real aorta failed. His health care team kept giving him transfusions but couldn’t keep pace with the blood loss. John was bleeding to death. He had three emergency operations and, during the last one, suffered a spinal cord injury. To promote healing, he was kept in an artificial coma for a month.
When John regained consciousness, he was paraplegic, and couldn’t control the lower part of his body. Though feelings returned to his right leg (the good leg), his left leg was weak and unreliable. After eight months of hospitalization for wound care, he was dismissed to my care, and came home to the wheelchair-friendly townhome I built for us.
A year passed and one day John received an appointment notice for therapy. John had been sedentary so long that I had my doubts about therapy. But dedicated therapists taught him to stand, stand and pivot, and walk several yards with the aid of a walker. It was a miracle and his therapists were miracle makers.
This is our fifth year in our townhome. John has been hospitalized twice for pneumonia, and once for pneumonia and pleurisy. In December of 2018, when a paid caregiver was with him and I was fixing John’s breakfast, I heard a thud and cry of pain. John had fallen. I called the fire department’s non-emergency number. When the team arrived and assessed the situation, they called for an ambulance.
Test results showed that John’s pelvis was fractured in three places. He was bleeding internally and had surgery to correct this. John spent six days in the hospital and was transferred to a rehab facility. This reactivated my anticipatory grief. I had experienced this type of grief before, yet this time it was stronger. Far stronger. Why was I grieving? Answering this question took several weeks.
I’m grieving for the active lives we once lived. John and I have walked on the Great Wall of China together, hiked the Inca Trail, and explored back streets of London. His hobbies—fly fishing in mountain streams, hunting with family members, traveling to far-off places—are gone now. Our walking program is gone too. John’s world is his wheelchair.
I’m grieving for the pain John has endured. His health care team tried several pain medications and all were ineffective. Finally, the team found the “right” medication and his pain was reduced. When he was transferred to rehab, however, his pain wasn’t under control. I worried about him and John worried about himself. A physician came to check on John and changed the dosage times of his medication. Her idea worked and John’s pain slowly ebbed.
I’m grieving for John’s despair. Using a Hoyer lift to go from bed to wheelchair, and wheelchair back to bed, caused excruciating pain. One person pushed John to roll him over, which caused more pain. Later that day John admitted, “I can’t take this level of pain anymore. I would rather die.” I wanted to sob but controlled my feelings.
Sometimes I grieve for the future. John’s life will probably be more limited. He may never regain the strength he once had and this discourages me. Then I think of our years together: dating for four years, our wedding day, having two daughters, growing our careers, and celebrating 61 anniversaries. John is the foundation of my life, my lover, my best friend, my defender. Each day I spend with him is a gift.
But we keep trying and loving and those are the most important things.
I’m experiencing the same grief as I care for my husband of 54 years. He was diagnosed with cortical basal degeneration in 2016. He has been unable to do anything for himself for 2 years. I have to lift him up from bed and get him into his wheelchair. I grieve for his lost independence and our lost dream of a golden retirement together. He is a young 75 and without this hideous disease he would still be very active. I struggle to find ways to make his day to day life as good as possible. It’s hard, especially since he now has much trouble speaking.