Monday, July 27, 2009

Arizona Dream

I recently wrote that my patient was pursuing his dream of going to Arizona one last time with his wife. We were waiting for Dream Foundation to process the paperwork. His wife started to feel like they needed to leave July 8 because she thought he was starting to slip and because she had a commitment later in the month. Instead of waiting on DF, she was somehow able to mobilize resources through their church and rent a van. They left on July 8 as they planned, along with their daughter, son in law, and a grandson. I'm sad to report that the patient died while he was in AZ. The wife told me that he started getting agitated while they were driving and then he fell at a rest stop. He quickly declined after that. She said she's not sure if he was able to enjoy the Grand Canyon or anything else they saw in AZ because he was declining. We ended up having to discharge him from our hospice and a hospice in Phoenix oversaw his final days. The wife told me that he was able to talk to her in his final moments and seemed to be at peace. She thinks he did know that he made it to AZ, even if he wasn't able to fully appreciate it. I went to his funeral this morning. It was a beautiful tribute to his life. So many people shared stories about his servant heart, adventurous driving skills, and love for his family, as well as the Chicago White Sox (you can see how we bonded!) A friend made t-shirts for everyone with the Sox logo on the front, the patient's last name and birth year on the back, and a Celtic logo and verse from Psalm 15 on one sleeve. What a neat idea! The honor guard was there as he had served for 13 years combined with the Marines, Army, and Air Force. He tried to reenlist for a 4th time after 9/11 but he was told he was too old- well, he was in his 50s by then. I've never been at a funeral service with the honor guard before. It was already a moving service but it seemed like we collectively cried as the flag was saluted and folded, then presented to the widow. This man was saluted as having ultimate patriotism but what also stuck out was his undying faith in Jesus Christ. There was much reflection that he is in a better place now and the service was a celebration of his life and of his transition to heaven. I was glad I was able to attend the service. The other highlight was that their beloved dog Murphy was there! I adore that dog and I will miss seeing him every week, as well as seeing his owners.

Grief and Literature

I just finished "The Story of Edgar Sawtelle" by David Wroblewski. While this was an Oprah pick, I heard about it from a patient's wife and finally picked it up. A brief background: Edgar was born mute. His parents raise and train a fictional breed of dog that is quite remarkable and known for their companionship. When Edgar's father dies suddenly, his uncle Claude insinuates himself into the farm and their lives. Think Hamlet. I won't go on any further with a synopsis so as not to spoil the novel except to say I was fascinated from start to finish. What I'd like to share are a few of the passages on grief, first from Edgar's point of view, then his mom Trudy, and finally his dog Almondine. They are beautifully written insights that will resonate with anyone who has mourned or works with those who mourn.

There followed for each of them, good days and bad, and often Edgar's best moments coincided with his mother's worst. She could be cheerful and determinedly energetic for days on end and then one morning he would walk downstairs and find her hunched at the kitchen table, haggard and red-eyed. Once lapsed, nothing could deliver her. It worked the same with him. Just when normal life felt almost possible- when the world held some kind of order, meaning, even loveliness (the prismatic spray of light through an icicle; the stillness of a sunrise), some small thing would go awry and the veil of optimism was torn away, the barren world revealed. They learned, somehow, to wait those times out. There was no cure, no answer, no reparation.
He returned from school one day in March to find his mother working in her bedroom, her hair a sweaty tangle about her head, her breath coming in ragged gasps. She'd already closed up the flaps on a tall stack of boxes and was folding a pair of his father's trousers and placing them in another box. Her gaze barely paused on Edgar when he walked in. Later, he searched to see what had been lost. The drawer that once held his father's belts and ties was filled with his mother's gloves and scarves. On top of the dresser, only her sparse jewelry collection remained, and the wind-up alarm clock. She'd even packed away the photograph of her and his father, newlyweds, sitting on the pier in Door County.
He woke one morning tantalized by an idea: if he could catch the orchard trees motionless for one second- for half of one second- if they stood wholly at rest for the briefest moment- then none of it would have happened. The kitchen door would bang open and in his father would walk, red-faced and slapping his hands and exclaiming about some newly whelped pup. Childish, Edgar knew, but he didn't care. The trick was to not focus on any single part of any tree, but to look through them all toward a point in the air. But how insidious a bargain he'd made. Even in the quietest moment some small thing quivered and the tableau was destoryed.
How many afternoons slipped away like that? How many midnights standing in the spare room, watching the trees shiver in the moonlight? Still he watched, transfixed. Then, blushing because it was futile and silly, he forced himself to walk away.
When he blinked, an afterimage of perfect stillness.
To think it might happen when he wasn't watching.
He turned back before he reached the door. Through the window glass, a dozen trees strummed by the winter wind, skeletons dancing pair-wise, fingers raised to heaven.
Stop it, he told himself. Just stop.
And watched some more. (p. 161-2)
"Edgar, do you actually think that how long a person grieves is a measure of how much they loved someone? There's no rule book that says how to do this." She laughed bitterly. "Wouldn't that be great? No decisions to make. Everything laid right out for us. But here's no such thing. You want facts, don't you? Rules. Proof. You're like your father that way. Just because a thing can't be logged, charted, and summarized doesn't mean it isn't real. Half the time we walk around in love with the idea of a thing instead of the reality of it. But sometimes things don't turn out that way. You have to pay attention to what's real, what's in the world. Not some imaginary alternative, as if it's a choice we could make."
But he's not gone.
His heart pounding as he signed it.
"I know. And all the same, you and I buried him. But he's here, too, isn't he? In this kennel, in the house, everywhere. But unless we walk away from this place and never come back we're going to live with that every day. Do you understand?"
No, he signed. Then: yes.
"And is that the same as saying he's alive? Do we treat that feeling as if he were really here?"
He found he couldn't answer her. What if he did think that the length of a person's grief was a measure of their love? He was as troubled by the simple fact of her asking that question as by his own inability to answer. (p. 257-8)
Yet he was gone. She knew it most keenly in the diminishment of her own self. In her life, she'd been nourished and sustained by certain things, him being one of them, Trudy another, and Edgar, the third and most important, but it was really the three of them together, intersecting in her, for each of them powered her heart in a different way. Each of them bore different responsibilities to her and with her and required different things from her, and her day was the fulfillment of those responsibilities. She could not imagine that portion of her would never return. With her it was not hope, or wistful thoughts- it was her sense of being alive that thinned by the proportion of her spirit decoted to him.
As spring came on, his scent about the place began to fade. She stopped looking for him. Whole days she slept beside his chair, as the sunlight drifted from eastern-slant to western-slant, moving only to ease the weight of her bones against the floor.
And Trudy and Edgar, encapsulated in mourning, somehow forgot to care for one another, let alone her. Or if they knew, their grief and heartache overwhelmed them. Anyway, there was so little they might have done, save to bring out a shirt of his to lie on, perhaps walk with her along the fence line, where fragments of time had snagged and hung. But if they noticed her grief, they hardly knew to do these things. And she without the language to ask. (p. 195)

Friday, July 24, 2009

Cancer and Dance

I was blown away by this piece choreographed by Tyce Diorio in the latest episode of So You Think You Can Dance. The song is "This Woman's Work" by Maxwell. Tyce created a dance inspired by breast cancer and it is riveting to see the pain and struggle but then ultimately hope. Melissa and Ade did an amazing job of bringing this to life. Ade is ultimately someone for Melissa to lean on. Judges, dancers, and audience alike were moved. I hope you will be too.

Friday, July 17, 2009

Death and Dance

So You Think You Can Dance has given us an incredible 5th season. As my computer has been down, I'm a couple of weeks behind in posting this video but it is well worth watching. Kupono and Kayla did a beautiful job of bringing Sonya Tayeh's choreography to life. Sonya said this is a dark dance in which Kayla is pulling away from death and Kupono is dragging her into it. There seems to be a vampire theme but overall the dance and the song appear to be more about the battle between life and death. The song is "Eyes on Fire" by Blue Foundation. The lyrics, "I won't soothe your pain, I won't ease your strain, You'll be waiting in vain," add to the complexity of the dance. I just hope none of my hospice patients go through something like this!

Small coffins

As I've worked with the family of a pediatric hospice patient, we've been discussing the funeral arrangements. I'm in awe of these parents that must now plan a funeral for their daughter. She still cracks us up with her quick wit during lucid moments but it is now just a matter of time before she slips away. The father shared an interesting idea regarding these arrangements. He said several years ago a child in the area died and the parents chose a white coffin. They then handed out markers to all the child's friends from school and in the neighborhood. The kids were able to cover the coffin with messages. The family I'm working with is considering doing the same thing. There's comfort in knowing these messages of love will follow their daughter's body in to the ground. They won't change anything but I think it would be powerful to see the impact one life had by reading what others write.

I'm struck by the feeling of helplessness I bear each time I leave their home. I often say that there's nothing you can do or say to make things better for our hospice patients. There are things we can do to keep a bad situation from being worse but we can't take away the illness, we can't stop death from occurring, and we can't take away the emotional pain of loss. I am generally OK with this helplessness when it comes to my patients. I'm good at being present, at listening, at helping caregivers care for themselves. Those gestures often mean more than empty words. But when it comes to a 13 year old dying of cancer, it all goes out the window. I want to make it better somehow, some way. And I know that I can't. I think that I have helped this family but I wish I could do more. Because of that, I'm having difficulty processing these visits. I feel drained and, yet, I know I'm the best social worker for this case and I hope that I can work with pediatric hospice patients again in the future. (I must note that I do not want there to be more cases of children requiring hospice. Simply, if a case is referred to us, I want to be the social worker assigned.) If there is anyone with personal or professional experience in dealing with children at the end of life, I'd appreciate hearing insight on how to process these visits and how we as caregivers can take care of ourselves during this time.

Saturday, July 11, 2009

Cal's All-Star Angel Foundation

A friend let me know about an awesome promotion through Cal's All-Star Angel Foundation, an organization that grants wishes and provides financial assistance to children fighting cancer and their families. They are partnering with my beloved Chicago White Sox! The game Sunday August 23 at 1:05 pm is dedicated to Cal's and almost a full 50% of every ticket purchased will go directly to the foundation. A lucky raffle ticket winner will get to go on the field for batting practice and recieve an autographed Jim Thome game jersey- how amazing is that? If you live in the Chicago area and are interested in attending the game/supporting this organization, here's the ticket order form. Ticket orders must be received by Cal's by August 1. Please pass this information on!

Saturday, July 04, 2009


I've been waiting for Young@Heart to move up on my Netflix queue and it came last week. As I was on-call for most of today (but did manage to watch my town's infamous 4th of July parade!), I finally watched it tonight. The Young@Heart chorus is a group of Massachusetts senior citizens who have toured all over, showcasing their unique covers of rock songs. Led by Bob Cilman, the chorus members gamely try their hands at The Clash, James Brown, and Bob Dylan. The documentary follows the group as they rehearse for their show "Alive and Well." Anyone who works with the 70 + crowd will not be surprised by the array of spunky personalities and the affirmation that life does not end once you get your Medicare card. Director Stephen Walker does an excellent job of giving us a behind-the-scenes look at just what goes in to their tour and the issues they face, from their own mortality, the loss of 2 members, but also their various involvements and the perks of aging gracefully. Sprinkled throughout are hillarious music videos. You'll never listen to "I Wanna Be Sedated" in the same way after viewing it through the eyes of nursing home resident. My only complaint would be a wish that Walker had added the performer's names in caption so as to better acquaint names with faces.

It may be cliched to say that I laughed and cried but it's true. One of the most moving scenes occurred during a performance at a jail. The group had just learned of the death of one of their members, Bob, and barely had time to process this before the show began. The last number was "Forever Young" which proved to be a beautiful tribute to Bob, as well as evoking a touching response from the inmates. Equally moving is Fred's rendition of Coldplay's "Fix You," originally a duet with Bob (The embedding was disabled but here's the YouTube link.) Later in the movie various Young@Hearters affirm that they want the show to go on when they die. One woman went as far as to say she hopes she dies while on stage and that they just drag her off and keep on singing! It's easy to see how much this group means to them- not only for the activity of singing but for the friendships that have been formed. I cannot recommend this movie enough and hope that you'll move it to the top of your list. Check out the Young@Heart website for their story, tour dates, and CD information.