Passing The Baton

I wonder how your days go, you may wonder about mine as well.  This was how my day went yesterday.  It is a bit of a long story, I hope you can carry on.

Sending my love and blessings,

Karen

Passing The Baton

You can become like family. If you visit the ill and frail and bring in a sense of help and comfort, you can become like family. I honor this and appreciate the relationships but there will be a time when the lines of the relationship change. I prepare myself for it as it see it coming and begin to pave, in advance, the way for the "passing of the baton".

I have been visiting Jane for over 6 months and have become a welcome guest. As her condition began to change and her needs increased, my visits were all the more welcome. Her husband, who did yeoman work to care for her with love and technical tasks also welcomed my visits, assessments and interventions on their behalf. In short, we all melded in an effort to keep Jane fine tuned for optimal health even in the face of fading health.

Early in the week he called me. "Jane is having pain, she has never had pain. Can you come?" Of course I could. I was not surprised by the changes but a bit startled by how quickly they came. She was writhing in pain and her abdomen was greatly distended. I reasoned that one of her many drain tubes were malfunctioned and sent her off to the hospital. Her husband called to say that it was "worse than we thought" Her cancer had advanced quickly and was obstructing her bowel. They would give her something for the pain and did not feel there was any other options beyond Hospice care.

For several months I had been paving the way for this service though the family resisted. I make no judgment about that, just make the option available and support their timing on the decision. It was time now. I had to sigh and know that the baton would be passed to another nurse who would become their "Angel" and support another and very important aspect of care. It would be incredibly unkind to try to hold on, to try to keep my part of the work going when I know, full well, that the focus would need to change from the fine-tuning of optimal function to fine-tuning for optimal comfort.

The challenge is in the transition of care, the "passing of the baton". I never want my patients or families to feel abandoned, nor do I want to diminish the fine work that we did together but know that the relationship must change so that they can bond well with the services that will carry them to the end of their own journey with the process. Jane had been admitted to the Hospice nursing home and I did want to visit to affirm that we remain forever connected in the fine work that we did but also to give them permission to connect with their new team. There can be a puzzling loyalty to the old-guard that prevents bonding with the new and I wanted to ease that need to be loyal by giving permission and supporting another kind of very needed help.

I met her husband in the hall and he said "Jane has been asking for you". I entered the room to see her so much more comfortable, her color returned and she smiled widely as she saw me. She began, as I expected, to be a bit apologetic for the decision. I sat with her and waited for the pause where she would let me share my heart in return. I complimented the staff and the room and the very fine way they are helping her to be comfortable. She said " I don't know if they are watching my potassium level. They don't take blood here." I smiled and took her hand, knowing that she was trying to reach back to the work that we had done together. I touched her IV bag that held the pain medication and said " Fentanyl, that is the "gold standard" for comfort . They made a wonderful choice for you. You seem so nice and awake but also you look very comfortable. Are you having much pain?"

She relaxed into our conversation quickly and then as her husband left the room she said "Karen, I am OK with this, I understand ( she sighed ) but he is taking it so very hard. I don't know what to do. What can we do?" Her tears began, I had not seen them before. Jane is a warrior woman and has battled her cancer in a remarkably stoic and task oriented way. This was a sweet gift to see her tears. I handed her a tissue and sat quietly. She did as I would have expected, one moment talking about the end of her journey with cancer and the next saying "I have beaten this before" There was no need to dispute or support either position, just to sit with her as she talked and cried. She did seem to need me to respond to one of her questions as she kept asking it. "What can we do?" I shared with her as I often share with my patients and loved ones that the measure of the grief and fear is the measure of the great love they share. It shows us how very close and how loving they are. "You cannot take away his sadness and fear now, just as you cannot take away your own. This is a hard part for certain but it is an indication and the great measure of your love. It feels so very hard right now because you have not wanted to let yourselves think about it and now...it is just rolling out. It will roll out, it has to and we are here with you as you travel this." I complimented the Hospice staff and remarked that it takes an angel to do this work. Mine, of a more technical nature, theirs of a gentle comforting nature. "Jane, my friend, I am so very glad that you are here to have these nurses care for you. Home health has some limitations and Hospice is so very wonderful." There...the passing of the baton. Jane relaxed back into her pillow and her tears dried. She kissed my hand so sweetly.

Jane's husband was so very devoted and his ability to provide the technical expertise in her home care was comforting to me as I supported their good work in the home. He was a "do'er", his way to show his love and dedication. I was quite sure that he was feeling at a loss of focus. I met him in the hall and he seemed to lead me outside to the courtyard and so I followed. I imagined that he would have things to say that may not feel right in the Hospice setting. "Karen, I understand that we need to keep her comfortable and that we can't fix her anymore but what should we do about the potassium? I don't think anyone is taking care of that and I don't want her to die from something that we can fix."

There it was, so very clearly the dilemma of end of life care and I was proud that he "got it" so quickly. Of course he would, such a brilliant man. I realized that I needed to pass the baton to the Hospice team in a way that would honor all the work he had done and also help him to make a transition. I explained the difference in approaches to care and reminded him that in our fussing and fixing we were not able to really fix the underlying process that was continuing. I said "Perhaps we could fix the potassium one more time and then there would be another time and another and it has never been wrong to fix it, nor would it be wrong now but as Jane begins to suffer in a way that we have not seen, the need for comfort care must be the most important to us now." I remarked that their Hospice MD was a brilliant and caring woman and would listen carefully to all of his concerns.

"Do you feel like you don't know what to do?" His tears began, it was good to see them. I waited as he fidgeted with eyes and rubbed his face. I waited as he stepped away and then stepped back to me. I waited until I saw him make eye contact with me again and then said, " The measure of the pain you feel right now is the very great measure of your love. It is good that you can cry..." He did. Now, I had to pass the baton and give him permission to change the work he will need to do. "The Hospice team is very wise. They do understand all the complexities of the care that you have been doing and it is not that they do not value that but their work, as they know that they cannot "fix" this, is to bring greater comfort to both of you. They are angels here and you are in very good hands to do a different kind of work" I could see the need and the struggle to connect with something to do and so I asked him " Can you take your intuitive energy and look for ways... find ways, to help Jane be most comfortable?" His eyes dried, his smile returned, he brightened and then he looked back at the door to the building. Yes, he was on task for a new task. The baton was passed. He hugged me and quickly walked back to Jane's room.

As I was walking away from the building, I saw Jane's daughter. She ran to me, hugging me and began to cry. "Karen, when you mentioned last week that we might have to have Hospice, I wanted to yell "NO ! " but now here we are." Another baton to pass... " They are angels here. They can help your Mom in ways that I would not be able to and I so appreciate the gift that they will be to you all as you journey this piece." She said "I don't want her to suffer any more but I worry that all the things that you have been doing, they are not doing." She would also need my permission to change the focus of the care. "We did all the tasks we needed to do while it was right to do them but the task now is to be sure that your Mom is as comfortable as she can be and that you all have time to spend with each other. Not "doing" medical tasks for her but just being together." She asked if I would come back. " I remain your friend, now...I am your friend. You are in such kind hands here. That makes me feel very good." Baton passed, she smiled and hugged me then turned to go into the building.

I went back to my car and sat for a moment. My body was shaking for the very hard and painful work that I did. I let go of the baton and my hands felt empty for a moment. Those deep heaves that preceed the sobbing were rising. That was the great measure of my love as I felt that emptiness. I focused on my breathing, in and out, in and out...I watched the clouds as they floated by and then I looked at my watch. I had a patient to see at 6pm and while I waited that several hours I could do some notes. The daughter had called me earlier to ask for a late visit so that she could be there as well...she had concerns.

Yes, there would be work to do at the next home.

My hands would not stay empty long.