I was talking to my husband last night and he reminded me of a story I had written about a woman I worked with when I was working as a trauma counselor. That story had ended up as an article in Caregiver Magazine. The woman in the story is someone I admire more than I could possibly express. He suggested that the woman’s story, as I had written it many years ago, would be a good thing to post on this blog. He was right, as he so often is, and here is the story.
I first met Helen shortly after she had been diagnosed with ALS, a progressively debilitating and usually fatal illness. As a long-time trauma counselor, I had frequently worked with people who had terminal illnesses but it was never easy. Helen surprised me though. Her biggest concern was not for her own all-too-brief future; it was for her husband, who was performing more and more care-giving tasks. Helen was afraid that her long-term illness would have a crushing effect on her husband’s health and spirits. Helen had nursed her first husband though his long and ultimately fatal illness so she knew exactly what her husband, Frank, would be up against in his attempts to care for her as the disease took its toll.
Although Helen had loved her first husband dearly, the five years she spent caring for him after his stroke left her exhausted and feeling alone. She had given up her job to nurse him, a job she loved dearly. She had wanted to care for him at home and kept him there even when he expressed a willingness to move to a nursing home. Helen remembered only too well the moments of exhaustion, frustration, and even resentment as her own life had been eaten up by the need to provide full-time care. She didn’t want Frank to endure such pain although he was insisting that he wanted to provide all her care.
What could she do, Helen asked me. She didn’t want to face the time when her husband might resent the sacrifices he would have to make. Most of all, she felt her exchange with him would be out of balance.
Already Helen’s disease had robbed her of almost all of her mobility and she knew that at the rate it was progressing, she would be unable to talk before another year was up. When Helen expressed her regret that she hadn’t taken an overdose of pills while she still could physically manage it, I knew she needed to find a way to be of help to her husband quickly.
My years of working with terminally ill people had taught me that we might need a two-pronged approach in handling this situation. Certainly I needed to talk to Frank about allowing Helen to move to hospice care when the appropriate time came. We needed to help him understand that Helen did not want to see him so overburdened with her care that he was suffering too. We also needed to find a way that Helen could exchange with Frank so that she could contribute something to his wellbeing.
Helen was a good person who had spent most of her life helping children as a teacher. Her mind was still intact even while her body was being destroyed by her illness. None of us want to be put in a position when we can only receive help and no longer give help in life. It was very noble and loving of Frank to want to care for her at home but he needed to acknowledge her spiritual and emotional needs as well as her physical ones. And he needed to confront his own needs as well.
As I interviewed Helen with an eye toward what she might be able to do that would be helpful to her husband, I learned that Frank had experienced a very difficult childhood that he was reluctant to discuss. Part of his reason for insisting that Helen remain at home throughout her illness was that he had been abandoned by his mother as a child and he perceived leaving Helen in a nursing facility as a form of abandonment. One of the few abilities Helen still had was her ability to speak and to listen. With her agreement, I taught her some simple techniques taken from a book I wrote many years ago called The Emotional First Aid Manual. This book, which is similar to a physical first aid manual, teaches lay people to provide effective emotional first aid to friends and loved ones. It teaches people the art of compassionate listening. Another extremely useful book on the subject of compassionate communication is called Non-Violent Communication: A Language of Compassion, by Marshall B. Rosenberg, Ph.D. I remember learning a huge amount about how to communicate when I first read that book.
Helen was an apt pupil, read both books immediately, and learned the techniques quickly. Using them, she was able to encourage Frank to talk about childhood experiences and discover some of the decisions he had made at the time when the events had occurred. One of Frank’s many realizations when he and Helen began having their nightly conversations about his life was that he had made an important decision at the age of nine. Feeling bereft by his mother’s desertion, Frank had vowed that he would never be a person who would walk out on someone else. He also realized that this decision had caused him to hang on to relationships long past the point where it benefited him or the other person. It was a tremendous relief to Frank to be able to have conversations each evening where he remembered his childhood and talked about all those times in the past. Equally wonderful was the effect it had on Helen. She felt able to be useful and enjoyed so much watching Frank experience relief and genuine happiness. She also learned important lessons from Frank’s realizations as he confronted the difficulties of his past.
I had planned, once I helped Helen find a way to feel useful again, to speak with Frank about taking actions that might be needed to lighten his load as a caregiver. I found, however, that there was no need to do this in the end. The couple’s close communication had helped them work out a plan for Helen’s care. Frank had realized that the most important moments of the day were the ones when they were talking on a deep spiritual level and he continued to talk to Helen even after she had lost the ability to speak. At Helen’s funeral. Frank described those conversations as some of the happiest moments of his life.
What does this story have to do with the subject matter of this blog, with the desire to make the final fifteen percent of our lives fulfilling? Contributing to the well being of another person can cause someone to experience great pleasure. It is important that both people in a relationship be able to be the helper; not just the receiver of help. Even a very ill person may be able to learn to listen well and compassionately and ask a few simple questions. If they can do that, they will be able to be of help to their partner. My husband, Bill, did exactly that action last night. He knew I’d had a rough day and he was asking me all about it so he could help me relax. That is one form of help Bill is able to offer me in spite of his illness. During that conversation, he remembered the story I had told him of Helen and Frank. By reminding me of it and suggesting it would be a good story to add to this blog, he not only made me very happy but he saved me a lot of work.
If you know someone who is the recipient of a great deal of caregiving and who doesn’t feel able to return the help, watch carefully to see if that person seems to want to contribute to his or her caregiver and then make the effort to see if such a contribution is possible. Some signs to watch for may include remarks that the person feels useless, feels he or she would be better off dead, or feels depressed. It is human nature to want to feel useful even when one is very ill or dying. Remind the person that the greatest gift we can give someone is the gift of attention and compassionate listening. Almost anyone can learn to be an attentive and compassionate listener. Enabling someone to feel useful right up to the end of his or her life is a tremendous gift to give to that person, and to yourself as well, and it will guarantee that this last stage of our lives is as fulfilling as we have hoped it will be. I would love to get feedback from others about their own experiences that might relate to what this post has to say.