On being a spousal caregiver

William D. Black
Knoxville, Tennessee, United States

 

When I was 55 years old, and had been in the private practice of Internal Medicine and Nephrology for 22 years, my wife Barbara was diagnosed with breast cancer. At the time of her diagnosis she already had widespread bony metastases. Five weeks later, I came home one evening to find her sitting in the same chair she had been sitting in for thirteen hours. She couldn’t get up. She had a pathologic fracture of the pelvis. I took off work to take care of her. I became her caregiver for the next five years until her death. The number of hours I worked during those five years depended on how well she was doing.

During Barbara’s illness, I was very involved in her medical care. I was by her side when she went through regular chemotherapy, radiation therapy, a stem cell transplant, Pneumocystis carinii pneumonia, steroid psychosis, a total hip replacement, and treatment for a subdural hematoma. When we left the tertiary care center following her stem cell transplant, her oncologist called me a nitpicker. I think he felt bad about letting that remark slip out because he followed it up with, “All nephrologists are nitpickers.” For two weeks following her hospitalization for pneumonia, she had steroid psychosis. When none of her doctors would pay any attention to me about her obvious change in mental state, I called a psychiatrist I knew, and together, over the telephone, we agreed on a treatment plan. I started her on olanzapine, 10 mg daily at bedtime and a smaller dose during the day, as needed. She immediately began sleeping better at night, and within a few days her state of mind started improving. During her five years of illness, the single hardest thing we had to deal with while in the hospital was trying to get her medication given correctly and on time.

Barbara’s final trip to the hospital was for altered mental status, severe lethargy, and extreme weakness. I had to call for ambulance transport because she was too sick for me to take her in the car. During that last hospitalization, we found evidence of cancer in the liver. Further testing also revealed metastasis to the meninges. Her oncologist said that treatment for the meningeal involvement would kill her.

That last morning in the hospital, I helped Barbara up to the bedside commode. Later, in trying to get her back into bed, I almost dropped her on the floor. I called for help to get her back into bed. I realized that I could no longer handle her alone. We made arrangements for her to be transferred to a residential hospice facility. She was transported by ambulance.

After Barbara was settled in her room, I left to go home, shower, shave, and put on clean clothes. I had not cleaned up or changed clothes in three days. Barbara had not wanted me to leave her side. On my way out, I saw several familiar faces among the hospice personnel. In hindsight, I spent too much time chatting with them. Eventually, as I was getting into my car, one of Barbara’s friends came out and told me that Barbara had become very restless as soon as I walked out of the room. I decided that I had better hurry up and do what I needed to do. I drove home and showered as quickly as I could. While I was shaving, the telephone rang. Barbara had taken a turn for the worst. I was notified that if I wanted to see Barbara, I had better get back there right away. During the frantic drive back to the hospice facility, I prayed that Barbara would not die before I arrived.

When I returned to Barbara’s room, she did not look as bad as I expected, but I made up my mind that I was not going to leave her side again. Soon thereafter, Barbara calmed down. She rallied. She perked up and became conversant. I fed her a chocolate malt with a spoon. She sat up, and we had the nicest conversation with our younger son and his wife for about an hour. She was doing so well that I began to have serious doubts about what we were doing in a residential hospice. After that conversation, she lay back down and proceeded to die.

Barbara was about the same for most of the night. At 4:00 AM, I was awakened by a nurse coming into the room. Barbara had fever and was sweating. Axillary temperature was 101.4 degrees. It was more of a struggle for her to breathe. Barbara was given morphine and lorazepam for pain and anxiety. The nurse told me that Barbara had started the active process of dying, that it was the beginning of the end. I sat at the bedside and held Barbara’s hand. The nurse advised me to tell Barbara that she was free to leave, and so I did. But in reality, I lied!

At 7:15 AM, Barbara’s axillary temperature was 102.5 degrees. Her feet were cold. I told her I loved her. I looked at the Thicken Up, the thickening material to put in her liquids to keep her from aspirating. I realized we would have no use for it. At 7:40 AM, I told her once again that I loved her. She opened her eyes. I feel certain she knew I was there. My emotions were very unsettled. My judgment was impaired. I realized I needed to try less to control the situation and look more to the advice of the people at the facility. The nurse started the morphine pump. Barbara continued about the same for several hours.

At 2:40 PM the hospice staff gave Barbara a bath. Soon thereafter, our older son and his girlfriend came in for a visit. Barbara brightened up for an instant when she realized he was there and then cheered up again on recognizing his girlfriend. Later on in the afternoon, Barbara became restless and was given lorazepam. Her blood pressure was unobtainable.

Early the following morning, Barbara was given more morphine. Her chest was more congested. At 6:30 AM, I called our sons and told them that their mom probably had only a few hours left. She developed more difficulty breathing. At 11:30 AM, Barbara was having agonal respirations. Her husband, both sons, and their significant others were at her bedside. At 11:49 AM Barbara died.

Barbara’s funeral was more of a celebration than a time of grieving our loss. The pastor eulogized Barbara, describing her faith and sense of contentment as she approached the end of her life. The pain of losing Barbara was the worst pain I had ever felt. It was especially acute during the funeral. In spite of my pain though, I felt a sense of peace, knowing that I had done what I was supposed to do.

For several days after Barbara passed away, my emotions were meteoric. During her illness I had authored a book about dealing with life’s difficult circumstances: Finding strength in weakness: A study of tribulation and our appropriate response. In this book I wrote about how spousal caregivers, after the deaths of their mates, may look for excuses to feel guilty. I warned against too much introspection and excessive feelings of guilt over things beyond their control. But I could not help experiencing those exact same feelings myself. I began brooding inordinately over giving Barbara the morphine and lorazepam and how they may have contributed to her death. I even telephoned one of the hospice physicians for reassurance. During the conversation, he reminded me that the doses of medication used by the hospice staff were relatively small and that this treatment really did allow someone to die with much less suffering. I also remembered how Barbara had told me not to allow her to suffer during her final hours. I was finally able to work through those negative feelings.

A few months after Barbara died, someone recommended the book, Final Gifts, by Maggie Callahan and Patricia Kelly. It was a comfort to me. The book speaks of several terminally ill patients whose dying was delayed and whose suffering was prolonged because of unresolved issues with people they were leaving behind. After reading the book, I had the assurance that, when the right time came, Barbara was able to die in peace because she had no unresolved conflicts and no unfinished business.

 


 

WILLIAM D. BLACK, MD, FACP, graduated from University of Tennessee Medical School in 1967. He served in the United States Army in Vietnam (1969-1970) and at the Walter Reed Army Medical Center in Washington, DC (1970-1971). He completed his Nephrology training at the University of Tennessee Medical Units in Memphis in 1974. He is founder of Renal Medical Associates, PC in his hometown of Knoxville, Tennessee. The practice opened its doors on May 1, 1978. He has authored several publications in medical literature. He was a spousal caregiver for his first wife from 1997-2002. They were married for thirty-five years. During her illness he wrote a book entitled Finding strength in weakness: A study of tribulation and our appropriate response (Winepress Publishing). Dr. Black has remarried, and there are three children in his blended family and three grandchildren. Dr. Black retired from private practice on August 2, 2010.