This author gives a beautiful description of the kind of work we do in being with dying people.
Giving care to someone seriously ill may be the hardest work you ever do. Being generous and mindful of your needs is essential.
Taking a yoga class, getting one day out of town, scheduling a dinner with a friend or two may seem like a luxury we don’t have time for right now. But now may be the most important time for such things. These are the things that provide the strength and personal sustenance to carry out good care giving.
In serious illness what seemed like a good answer yesterday may be totally useless today. This can be frustrating and leave everyone feeling like they just can’t get it right.
The truth is this is the way to be present and caring for someone who is ill. Yesterday you may have finally found the comfortable position on the sofa, bed or chair. Today that may not even be close to what works. The effect of a certain medication may not help today when yesterday it was a great relief. The direction the illness seemed to be going can totally change overnight or in an afternoon.
The best solution is communication. Find a way to speak to one another as frankly and caringly as possible. If the question is clinical get hold of the nurse, social worker or physician. If anyone feels “in the dark” or unclear on what to do or what is happening, that is a sign that some form of communication is called for.
Children are often much more aware and much more resilient than we think they are. Allowing children to express their fears and ask whatever question they want to is a great help to them. This can be painful for us, but it is often helpful for the child to see how we are feeling and know that it is okay.
People can be sad or frightened and still love and care for each other. That is what the child needs to know. The only way they can know it is if we listen to them and be as honest and genuine with them as we can.
The important lesson the children are longing for is: the family is going through this very hard time, but we will love each other right through it no matter what.
Your place of employment has most likely dealt with situations like this in the past. They may have benefit packages or ways of helping families out. With children and teens it is wise to engage the school counselor or whoever the school contact may be. These people can act as a liaison or guide when a situation at home may be challenging the student. Reaching out and communicating is key to keeping everyone working toward the same goals.
Joseph and Betty had been married 53 years. They had managed his heart disease well but now he had a stroke and could no longer speak. These two had great years together of travel, enjoyment raising the kids and living life fully. Now they could not speak to one another.
Some of the objects the wife was most proud of her husbands were his fantastic drawings and paintings throughout the house. The next time we met every drawing tool and medium I could think of was brought. Pads for water color or charcoal drawing were laid out. This couple found a new way of communicating they had never explored together. Their intimacy grew and they communicated now in an entirely new medium.
Her husband sat in the armchair next to the bed and looked as if he had been there for a great deal of time and had no intention of moving while his wife was ill. Her cancer had not shown itself until it was spreading in her body.
This question had become central to her. “Why has God done this to me? I went to church, I prayed, I raised my children to love and respect God.” I said to her: Do you want to know why this is happening to you? She said yes. I said it is because these bodies wear out. We do what we can but our bodies begin to not do what they have been doing. Sometimes we can bring back a function or two but eventually the function leaves us.
It was so clear their love was about so much more than the health of her body. Their love was so much more important than any body part or function. They loved each other for who they were to each other, what they had shared and what they meant to each other. We began to work with the shift from what is being lost to what is right here in the room and what has been built and will live on into the future from their love.
A seventy-five year old man was dying from a cancer he fought for years. I asked him what it was like being in this bed that was set up in what had always been his dining room. His answer was boring, boring, boring.
The idea I had was to move one of the wild bird feeders he had outside the kitchen window to a window he looked out on now. It was a great love of his to care for these birds. At first he agreed to the idea of moving the feeder. Later that day he politely thanked us for the idea and asked us to leave the feeder where it was.
What became clear for us was his attention was turning inward. He was no longer interested in the activities and stimulation of the outside world. His concern now was of important conversations, finishing personal affairs and relationships and saying goodbye. When we were able to join him on this work much got accomplished. His death was peaceful and connected to those he loved.