Wednesday, November 26, 2008

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.


Anonymous said...

Tomorrow is Thanksgiving Day and as I celebrate with my family, I will include your family in my prayers. What a blessing you all have been for Susan as her physical body has declined. I can see the love in your family through your postings and from my previous communications with Susan. Your hospital living room is so much better for Susan than any suite at my hospital. God Bless you for your final gifts to Susan. I know that she will complete her work with the Lord and when the time is right she will slip away from you. Nan Morgan (classmate from Regis)

Anonymous said...

It is such a privledge to a part of your family's extended church family. To reassure you God is with Susan and your family. We are never alone. I will focus my prayers on the living room hospice and hope to a bit of love and warmth during the step of Susan's journey.

NancyT said...

Dearest Rob, Susan, Jon & Patrick,
We send you our love, our prayers and especially from the choir, our music each and every time we sing.
God be with you all in His Name we pray.
With Love,
Nancy & John Thompson

CarolE said...

Your cancer journey journal has touched me each time I visit, and leaves me a little envious of all the love and care surrounding her. In our support group, Susan spoke of how she wanted to show that it is possible to die with dignity and she seems to be doing just that.
Blessings on each of you.

Mary said...

I was just enjoying some memories of Noye's Fludde from May of 2001. The South Dakota Hulac's are all thinking of you!

Love, Mary, Dave, Bridget, Sarah, & Paul

Peggy Gonder said...

Dear Rob and Susan,
You have been in my thoughts and prayers since Bill Calhoun mentioned you have entered the final chapter of this cancer journey. Martha F. shared the link to your blog and your posts and photos are wonderful!
I'm sure Susan feels the love you and Jon and Patrick give with everything you do for her and for your presence. May the love of God and the loving support of your many friends continue to surround all 4 of you.
Blessings, Peggy