My Story - Good wife Bad Wife

Ellen's Story

Kaethe’s story reminds me of my challenge to what it meant to be a “good” wife. During my late husband Ron's illness ( he had ALS) I struggled with the idea of myself as a “good” or “bad” wife. At twenty, when I said my marriage vows, I hardly considered what it meant to promise to be with Ron “in sickness and in health.” Did this mean that I was supposed to become Ron’s caregiver? How could I do this and care for my children, bring in a salary and take care of myself? I brought these questions with me to the hospital at Stanford where Ron had just been put on the ventilator.

Before taking Ron home from the hospital after he was put on the ventilator, we had several planning meetings with the staff. At the last meeting before Ron was to leave the hospital, my sister Joan and I met with a team of doctors, nurses, physical therapists, rehabilitation engineers, and a social worker who were there to put the finishing touches on our home care system. No one questioned ry whether Ron should come home. Our job was to make it happen. Others on this team may have been aware of the complexities of this decision not only for Ron, but for the entire family, but only the social worker spoke to me directly about this.

After the final meeting, he took me aside. He was the first person to ask me how I was doing. I was carrying a clipboard. My papers were askew, and I had a long list of questions that I had to get answered. I hoped this conversation wouldn’t take long.

“I’m doing okay.” I answered, in a hurry to get going with the things on my list. “I don’t have time to think about me right now. There’s just too much to do. I’m scared sometimes that this is more than I can handle, but we’re doing it.”
“Have you thought at all how this will change your relationship with Ron?” he asked.
“Not really.” I lied. “I just want to get Ron out of here and get him home. I know it will be different and hard, but I can’t think about that now. I’m focused on how we’re going to get $10,000 to pay for the wheelchair that people say we need. It has to be specially equipped so Ron‘s ventilator can be attached and it has to have a movable back so he can stay in it for a long time and work.”

I hoped that the social worker would let me get on my way, but he just kept talking.

“I know there are a million things for you to think about, but I want you to spend a little time talking with me about your role as caregiver. I don’t like to give advice, but it is my opinion that you should never become Ron’s nurse.”

Suddenly he had my attention. I listened closely as he explained that if I took responsibility for any of Ron’s nursing care, the nursing agency would no longer be legally responsible to provide a nurse for the 24-hour care that everyone agreed Ron needed. If I took on any of the nursing care, and if the agency had a problem getting someone for a shift, it would become my job to cover the time until they found someone. On the other hand, if they took on a 24-hour case and if I were not willing or able to do nursing care, they were responsible by law to have someone there all the time. The social worker warned me that many families he knew who took on the care of their father, mother, husband, wife or child quickly found themselves exhausted, ill, and in some terrible cases, responsible for a loved one’s death.

He went on to talk with me about how my nursing Ron would also affect our relationship:
“Figuring out how to continue as Ron’s wife will be hard no matter what, but if you become his nurse, the very basis of your partnership will be threatened. And it will be almost impossible for you to continue to function in your job and with your children. I know of situations where this distinction isn’t made and everything, including the nursing system, falls apart in a short time”

I felt afraid as I listened to him. He knew something that I only had
glimpsed. I wondered what was my job as wife?

I never found the answer to my question about what kind of wife I should be. Ron and I struggled for seven years over our expectations of one another. We didn’t learn to listen to one another in the ways that Kaethe described. Ron was often angry with me and disappointed in me. I was disappointed in myself. I felt overwhelmed and inadequate.

Our relationship struggles intensified the night Ron came home from the hospital. I went into our bedroom to sleep with him in his hospital bed. I had to ask the nurse, who was comfortably sitting in a large yellow chair, to leave us alone. I said I would call her if we needed her. She left reluctantly, and I climbed in next to Ron. The bed was narrow and there was not enough room for me. I nestled around Ron’s unmoving body. After he had entered the Stanford hospital, he had lost almost all movement. I pulled his arms gently around me. The cuff around his tracheotomy, where the ventilator tubes attached, needed to have the air removed so he could talk around it by using the air to force out his words. At night, the cuff was up and he couldn’t speak. I spoke to him while he listened and nodded from time to time to let me know that he was still awake. I stayed with him trying to find ways to fit on the bed. Once in my moving around I jostled his trach. His grimace let me know how much it hurt. I felt as if I was supposed to find a way to fit with him in this new bed and take care of him throughout the night. Instead, I took a mat and a blanket and slept by the French doors in the dining room. The girls were asleep upstairs in their rooms. I didn’t know where else to go.

Lying down on the mat looking out through the doors, I watched the moon. Unlike Kaethe, I did not feel connected to it as she always had, but felt afraid of the dark just as I always had. I ached with sadness for Ron. I couldn’t figure out how to care for him and how to care for myself. I slept fitfully, listening for the equipment alarms that might come from what was now Ron’s room.

During those years our different perspectives and priorities stood between us. To feel close to Ron, I needed to be able to talk to him about my sense of how we were changing. To stay alive, Ron needed to focus on what was the same, especially his internal thoughts and feelings, and he wanted me to pay attention to how we could still be the same with one another. The nurses lined up behind Ron, making it that much more difficult for us to remain close. They hadn’t known Ron before he was ill. They accepted him as he was. They thought I should be able to do the same.

On the day Ron died, we forgave one another for our disappointments and limitations. Holding hands, we cried, feeling love and grief for what we had lost. I think if I had understood more of what Kaethe understood about taking care of herself and mothering, I might have learned to be a “good wife,” but I missed the opportunity. In retelling the story now, I am more ready to forgive myself, and I realize that we were overwhelmed and did not have a Teacher like Kaethe to guide us toward change.