One day, I asked Hans what was it that he missed the most in losing his independence. I thought he might say drinking his coffee or eating his favorite meal, but, he said it was his walks in the woods. “And what is there about the woods?” I asked. “I love the beams of light and the shadows”. Hans was an Engineer with a large local company and had worked there for many years. While in his sixties approaching retirement, he began to have symptoms that eventually led to his diagnosis of ALS. As the disease progressed, Hans lost more and more of his ability to function independently until Hans became totally dependent for all his needs extending to even his lack of ability to speak or swallow safely. When I met Hans, he was only able to slur words which made it very difficult for me to understand him and, yet, I remember those days as days of joy and laughter. Hans was so patient and when I would become frustrated for him, he would laugh and look at me with such tenderness. According to his wife, Hans had always been very rigid and methodical. He was a man who loved without showing affection and wanted things to go just the right way at all times, that is, his way. Hans could be very stubborn and stuck in his ways. At times, it caused difficulties within his relationships. I remember his wife saying that it was the ’ALS’ that brought out the best in him. That sounds hard to believe, doesn’t it ? And yet, the man that I got to know very well from countless visits, was a man who loved well, valued life and always appreciated the moment. He treasured the simplest of gestures and he lived life to the fullest. Yes, even in his disability ,disease progression, and loss of independence, Hans chose what was important for him and his family and enjoyed the quality of life that he perceived as good and worth living. Many were affected by Hans and his powerful spirit of joy. Hans turned his fears into opportunities and the strength of his character became a testament of the power of the human spirit. All of us who knew and cared for Hans were touched in an indelible way and we are all better for knowing him. Hans taught us to face our fears, accept our challenges and laugh along the way.
So often, a person is given the news of a devastating diagnosis and poor prognosis that leaves the person feeling hopeless and overwhelmed. I remember when my daughter Krista and I received the news that she had an incurable diagnosis. Of course, we were very anxious going to the doctor’s office to receive the results of tests. “Krista, you have a disease that has no cure, but, it’s not as bad as cancer. With your diagnosis, there is no cure ,but, you can get a liver transplant.” Those words resounding over and over and, as Krista and I looked at each other, we both were trying to be brave and hold back the tears. Krista was fourteen years old and had so many dreams and hopes for her future. The news was devastating and that was probably one of the most difficult weekends of our lives. Each of us spent much of the time that weekend alone in our own room not seeming to be able to talk to each other about what was our worst fear. So many things ,I would do differently as I look back over that period of time, but, so many things were lessons of love for both of us. Krista was sensitive and kind and always thinking of others. She went out of her way to make others feel special and important and she kept many things to herself. Namely, her greatest fears including the fact that she may not survive this disease. Through the days, weeks, months and years that followed, Krista’s inner strength and courage were a continued witness of how God’s grace truly is sufficient. I learned many lessons from a remarkable young woman who happened to be my daughter and who also became my dearest friend. Don’t put off what is important to you. Tell those you love, how important they are to you not just in words, but, in every thing you do. Enjoy each moment and make it count for something and be open to the unexpected because you just never know what opportunity is around the corner.Krista died on 2/21/1993 at 3pm on a snowy Sunday afternoon.At her moment of death, she raised her head up, opened her eyes and looked toward the door. What did she see? Who did she see? What was she experiencing ? The expression on her face was one of awe and joy and I will never forget that moment.
Fran was a widower in her sixties, lived alone and very independent. Fran liked things to go her way and could be somewhat narrow minded concerning certain issues especially when it came to anyone suggesting that she needed help with anything .Fran had two sons, one lived locally and the other lived hundreds of miles away .Both sons loved their mother very much and were willing to do whatever was needed to keep their mother comfortable and safe. Fran had other ideas and could be quite stubborn about what she needed and, according to Fran, she never really needed help. Fran was a Hospice patient for several months and during that time I visited Fran twice a week until she became bed bound. My challenge in providing case management for Fran was to provide quality medical management of her terminal illness always recognizing Fran’s need and right to make her own decisions. It was very difficult to see such an independent woman change little by little and finally succumb to the ravages of her illness. Fran had told me one day that she was concerned that her family would be alone with her when she died and so she planned to die just after 8am on a day when her regular LPN, Suzanne, was scheduled to visit. Suzanne and I kept that in mind until a day when Suzanne arrived at 8a and entered Fran’s room. It was only minutes when Fran took a long breath and then nothing. Suzanne coaching Fran said ’Fran you did it ! And all of sudden, Fran gasped and took a deep breath. Although Fran had been telling us for weeks that she was ready to die, Fran decided she needed more time. Fran lived for several more days and we all wondered what was keeping her going. She ate nothing and barely took a sip of water. During those days, I visited often and spent hours with Fran sitting bedside. I was privileged to witness and share in Fran’s unique ‘journey’ .Is the journey delirium? Delusions? Hallucinations? Or is there something else going on that we know to be true, but , we just can‘t prove it.? One of those last days while sitting at her bedside , I heard Fran speaking to someone and say “ I can’t come with you now ,I still have 2 here to take care of”. Was she referring to her 2 sons ? The next day as she laid minimally responsive, I heard Fran say “those angels in the doorway are calling me “. Well, Fran did die a few days later and it was shortly after 8am.Suzanne and I were both there as she had planned and Fran died peacefully and comfortably .She was a great woman and I will never forget her !
Rae was a retired nurse who lived with her daughter and family. Rae was a somewhat private person who always wanted to meet with me in a small den toward the back of the house.Rae was very detail oriented and quite exact in what she wanted and how her medical management should be handled.It didn’t take long before I knew that I was going to like her very much and that my visits would always be interesting and unpredictable.At the end of our visit each week, Rae would schedule her appointment for the following week and would park herself in the Den shortly before my arrival . Over the next weeks and months , I got to know Rae well and I became one of her biggest fans. Rae was kind and generous,she had a strong faith in God and she always had a good story to tell me.Over those months, Rae and I talked about so many things,but, specifically her death and how she wanted to prepare her family and herself. On one visit approximately 2 months before she died, Rae was open and candid about her own mortality and discussed specifics concerning her wishes for the time when she was dying.I listened attentively and made mental notes of the scene as she described it.We didn’t talk about it again until about two months later. It was early in the morning on a day in late winter when I got the call. Rae had been declining and was in bed ,now, all the time and totally dependent for all her care.Rae’s daughter called me to inform me that her Mom had changed more during the night and she felt that her Mom was dying with only hours left.I assured Rae’s daughter that I would come right away and when I arrived, Rae was lying in bed very still with her eyes closed and breathing slowly. I spoke softly and let Rae know that I was there with her and she nodded to acknowledge my presence.Rae spoke in a gentle whisper to me and said “get everything ready now, it’s time”. I looked at Rae’s daughter and we both knew what Rae wanted.I went ahead and made the adjustments to the environment as Rae had described and requested.Rae wanted the room dimly lit and she loved Gregorian Chant so naturally Rae requested that her favorite music be played. After the room was changed to Rae’s specifications, I sat at Rae’s bedside and said the prayers that she had asked me to say when she was dying. At the end of the prayers, I look at Rae’s daughter and she looked at me and we were both crying.At such a serious and solemn moment what more needed to be done for this beautiful woman that we both loved.In the silence, there was much spoken through our eyes and it was such a sacred moment when suddenly Rae opened her eyes , looked at us and said “Am I still here?”. It certainly uplifted our hearts and made us realize how little control we have at times.
Being a Hospice Nurse is a great opportunity to see people at their best.For many years , I worked as a Hospice Home Care Case Manager and that was , by far,the best job I have ever had as a nurse. Each day brought new challenges and also new opportunities to connect with amazing people who were giving of themselves and putting someone else first for a while. Many of the caregivers that I worked with were able to take a leave of absence from work to care for their loved one,but, many did not have that opportunity and still were successful due to their great determination and perseverance. So many times when I would walk into a home for the first time, the family would be overwhelmed and have a feeling of defeat or just looking for something to hope for again.With some support and guidance, this same family was able to accomplish great things because of their love and commitment to their loved one. There are so many stories that I cherish and hope to share with you to give you hope and faith in this human race of which we are a part.Some of my stories may be sad,but, so many have humor and joy. Those are the stories that will make you laugh ! Also,I invite you to share your stories so the memories continue to live on and inspire others.