For Real

On Thursday, November 13th, Susan had a significant new pain crisis that has turned the page on a new chapter of this journey. The standard treatment for pain of course, is to increase pain medication, in this case morphine. The hospice philosophy, which is all about comforting the dying, accepts no excuse for pain. Pain interferes with the important emotional and spiritual work that is being done in preparation for the transition out of this life. The tradeoff with pain management is sleep.

So Susan has been more asleep than not since that Thursday night. Even in wakeful times, she’s still in a world of her own. But she’s perfectly aware of what’s happening and has grown in her level of acceptance. The reason for the pain is undoubtedly disease progression, which means we’re getting yet closer to the inevitable beginning of a new journey for her as well as for the rest of us. Underscoring that reality has been the breathtaking speed of change in the household. Suddenly, we have a hospital bed in the living room, and we’re using more oxygen. Jon and I are taking turns eating and sitting with Susan who is essentially uninterested in food and no longer able to sit at the table. One of us sleeps in the living room with her at night. We have meals and pastors, and professional caregivers coming and going on a regular basis. Friends and family are right here with us both physically and spiritually. Sponge baths and changing the bed and lots of laundry are now the norm. Susan hasn’t been upstairs since Saturday morning because getting her up and down stairs has become too adventurous. Her favorite recliner in the family room seems like a distant memory. Just in the last few days, our lives have been transformed into the picture of in-home hospice that many of us probably imagine – and maybe dread. She has swiftly become bedridden and dependent on us for nearly all of her needs. Susan and I have discussed this picture many, many times over the last 4 ½ years – and here it is for real.

A wonderful friend of ours, Helen, offered an amazing metaphor to all of this. Helen suggests that Susan is in labor again. But this time it’s to give new life to her soul as her body dies. As I was sitting in the living room reading and contemplating our circumstances, trying to decompress from all of the new stressors that this has produced, I suddenly became keenly aware of what in-home hospice is all about – and it’s a lot like trying to make childbirth as comfortable as possible in familiar surroundings. Much of the stuff you’d expect in a hospital room is right here in our living room. We even have one of those over-the-bed tables on wheels that can be raised and lowered and upon which hospital meals are served. But it’s still our living room – with new meaning to the term “living” – not a stark, unfamiliar, and unpleasant place. I’m reminded that most of the literature we’ve read about the hospice movement emphasizes that dying is actually part of living – for all of us. We need not treat it as a failure of some sort. Doesn’t it make more sense to acknowledge its reality and deal with its inevitability by exercising as much control over it as we can? Prior to “modern” medical technology, isn’t that what people used to do? Die at home? Give birth at home? Susan occasionally wakes up, looks around, makes an observation, and resumes her slumber. The other day she commented “we have a nice living room!” Point made.

Jon’s prior CNA experience in a nursing home has proved to be invaluable. He’s teaching me all the tricks. But the new chores that Jon and I have taken on are unpleasant and exhausting – and not just for us. Susan, even though she’s not the same coherent person we’ve known, clearly doesn’t like any of this either. We had hoped to avoid this stage. But the fact that we’ve had so much time to prepare for this is a gift. We’ve read a great deal about hospice and the dying process – and I’m beginning to understand why it can be an honor to be a caregiver to a loved one.

Uncertainty is still part of the process. Though things have changed rapidly in the last 13 days, we still don’t know when she will be able to let go. She doesn’t either. We only know we’re closer than we were before. Patrick was here for a few days last week and will return for the Thanksgiving break. Instead of the usual Thanksgiving custom, the four of us will be giving thanks in a very special and memorable way – for the gifts of life and love, and especially for the extraordinary legacy of Susan Diane Given Moody.

Urging Us On

When I was about 15, I walked the Lincoln Trail as a boy scout. The Lincoln Trail retraces the path that Abraham Lincoln walked between Springfield, Illinois where he was studying law and New Salem where he was living in the mid 19th century. It’s 20-plus miles – a pretty long trek for a youngster, especially if the youngster isn’t in the best of shape. But my brother and my cousin had both done it and I wanted to do it too. Hiking the trail earns the scout a medal and a big sense of accomplishment. Besides being dead-tired toward the end of the long day, I remember feeling lonely during the journey, even though I was with a small group of others who urged me on. I probably wouldn’t have made it without that support.

This memory could be a metaphor for our cancer journey. Susan, Jon, Patrick, and I are all experiencing this trek in our own ways, and I think it feels a little lonely for each of us even though we have lots of people urging us on. I don’t know how people do this without the encouragement of others because getting to our destination is a long trek. As with many life experiences, hiking the Lincoln Trail must have been part of my preparation for this time in my life.

Lately, the show of support has been particularly evident from all of you. We’ve gotten loving, non-invasive messages in all kinds of ways and from all sectors of our lives. Some of the messages have become dependably regular and are our bedrock. Some of them have been unexpected and gratifying surprises. The number of people who are with us on this journey is astonishing, and humbling, and touching. It illustrates the best of our humanity as we travel the circle of life together. It is what will help us make it. In spiritual terms, all of you equate to the presence of God in our lives – and God is mightily present.

In the last month Susan has gone from what had been pretty stable pain control to sudden, severe new pain. After a couple of weeks of increased doses and being “out of it”, she seems to be in a little better control of the pain for the time being. Her memory and cognitive abilities are still pretty variable from one moment to the next. She struggles with the loss of function. We know pain management will be an on-going challenge. Stability and mobility are growing issues and all of us are fully exercising our coping skills as we strive to keep her safe, comfortable, and at peace with the situation. It’s already been a long hike and we don’t know how far we have yet to go. The sense of accomplishment we seek at the end will be helping Susan finish her earthly life in peace and comfort. But we’ll make it – because we have you urging us on. God is with us. Thanks be to God – and to you!