Category: hospice

Motivation: #Walk2EndAlz

Deb
This year’s walking crew representing JSSA Hospice staff, volunteers and families. We’re missing a few faces in this picture, but THANKS to everyone who participated! 

I participated in my fourth Alzheimer’s Walk today. I almost didn’t go because I have a banged up knee that is not responding to the current treatment plan of exercise/rest/ice/meds/ignore/repeat. (Yes. I’m going to the doctor next week.) I went anyway because it’s a great time with my colleagues. It’s impressive to see the size of the crowd that shows up on the National Mall. It reminds me how devastating this disease is, and how many are affected. Today I noted that there were healthcare providers like our hospice, facility staff members, family members and… patients.

This year, there were residents of an dementia unit participating in the mini-walk. One woman was carrying her baby doll, her caregivers beside her. A man was determinedly trudging down the sidewalk using his walker. Countless others were pushed in wheelchairs.

You can bet I sucked it up and walked. I walked for my patients and their caregivers. I walked for the families who have had a relative die due to complications of Alzheimer’s. I walked for my coworkers who go above and beyond every day.

I also walked because our healthcare system is inadequate and puts an undue burden on families of patients with this disease. It was ironic to be in sight of the US Capitol building, where attacks on affordable healthcare and cuts to Medicare and Medicaid are on the agenda. But I am privy to the day-to-day heartache of watching their family member lose capacity, forgetting faces and names. I hear their concerns about “running out of money” because of the costs involved (which are not reimbursed!) I walked to honor the lives of my patients.

It’s simple. Research dollars help find treatments and a cure. Donations support caregivers and provide needed resources. And staff members and volunteers are reminded that their work with dementia patients and their families makes a difference.

So thank you to all who were among my sponsors. Thank you to the families and patients I represent. Thank you to my coworkers. Let’s keep walking.

P.S. it’s not necessary but you can still donate here!

Ally in motion

Deb

It is a long night in Terminal C tonight. Once the airline’s gate agent announced a 2+ hour delay, many of the ticketed passengers either bailed to another flight, or went to find a place to eat dinner. I found a quiet corner, plugged in my headphones and started reading.

I looked up at one point, and seated across from me were two lovely black women. We made eye contact and smiled, and I was about to resume reading when I realized they were talking to me. I unplugged and we started chatting.

“We couldn’t help but notice… your buttons…”

From that cautious statement, the conversation flowed. Where we were traveling, who we were seeing, what we do for a living, how we hated fight delays… and then one of the woman said haltingly, “My dad has cancer. He didn’t come to our wedding… and now he’s in hospice.”

And suddenly, my worlds as an ally and a hospice chaplain collided. It’s the sad, familiar, heartbreaking story I’ve heard over and over… Finding the love of your life. Losing your faith community. Facing your family’s disapproval. My heart broke a little more with each word of their story.

We prayed. There were tears. And while there wasn’t much I could say to help them see their way forward, we parted ways with a little more hope quietly shining in a rainy corner of the world.

That’s really all we’re asked to do, you know. Give a little encouragement and BE the Love, BeLoved.

Christmas in the Emergency Department

Deb
Not your usual Christmas feast!

I have to be honest. This pastor’s Christmas joy was a little flat this year. But inspire of how I felt, there was a lot of joy in the middle of the mess.

This Advent opened in a true Spirit of anticipation. I was aware of my own sense of waiting and longing. It collapsed around me when, during the week immediately preceding Christmas, I found out that I was not selected for a new ministry opportunity. It stung like hell. It was (and is) heartbreaking, but it is also for the best. Recovering slowly from my disappointment, I discovered I was not really up for the last minute Christmas shopping and planning.

On top of that, our church is facing a challenging financial twist which not only affects our church as a whole, but eliminates the salary for my (very) part-time job. I am serving, for now, in a volunteer capacity.

The usual hilarious disorganization of a Christmas Eve service was compounded by the Choir Director leading despite a bad case of laryngitis, and choir members inexplicably deciding to make other plans and miss the candlelight Christmas Eve service. By the time the service started, I was finally in sync, enjoying the people in our congregation, and our celebration of Love arriving on the Earth in human form.

Just to keep things interesting… In the early hours of Christmas morning, a GI virus and its complications meant that I spent Christmas Day in the ED with one of our beloved daughters. The rest of the family put the turkey dinner and gift-giving on hold.

As I sat with our daughter, watching over her, I had a new appreciation for the staff who work on holidays. I have worked many of them in years past as a chaplain. It is hard to keep your spirits up when you know you are missing your own family’s celebrations. The ED staff, was, to a person, kind, caring and helpful.

But I also thought about the families who had a disappointing Christmas that day. My hospice families who tried to celebrate in the middle of loss. I remembered the families and spouses of those in the military, and first responders. Their Christmas celebrations were impacted, too, and in far greater ways.

Today our daughter is on the mend. We cooked the turkey and all of the accompaniments. The cranberries and stuffing, potatoes and carrots graced the table too. (We won’t talk about my gravy… it was, as per usual, disappointing.) The cookie dough will get baked… eventually. Flights to holiday celebrations are being re-booked for a healthier day.  And all is well.

In the middle of the mess that is life in the ED, I was reminded that the message of the Christ Child is the center of my Faith. In impossible situations, with unlikely companions, despite all odds, God breaks through with another “I love you” and a “Hallelujah!”

I don’t want to make it an annual event, but I am grateful for God’s speaking through the clanging of culture, sickness and politics to declare: 

“Don’t be afraid!
Look! I bring good news to you
wonderful, joyous news for all people.”
Luke 2:10

 

Book Review: The End of the Island

Deb

IMG_9952In a chaplain’s world, theodicy is that delicate and difficult balance of the gut-wrenching work of understanding why the Divine allows evil and human suffering. Human as we are, there is such a temptation to distill the work of theodicy into neat little pieces. As if pain, suffering, loss and grief would EVER be done “neatly.”

Many books attempt to express this through allegory or rigid theological systems. Instead of a systematic expression, however, Tucker places his allegory in a kind of contextual theology. Thus I approached this book with a healthy dose of skepticism.

Jeffrey Tucker takes as his muse “The Happy Prince,” a children’s short story written by Oscar Wilde. (You can read it on-line here…)  In the postscript of his book he delves into some of the influences of that story in his work as a chaplain. It’s worth reading first before you delve into the topics his work contains. I would have liked him to develop his own perspective on why he thinks he might be the Prince. It would have given his story a better foundation, for this reader, anyway.

The book is organized around the narrative of an old man traveling “to the end of the island” – a journey he feels he must make as his “time is short.” The “journey” is expressed via short vignettes, spread out over several chapters, each addressing a different question as it relates to human suffering. The questions include:

  • Where is my Suffering?
  • Where am I in my Suffering?
  • Where is the Divine in my Suffering?
  • Where is my Human Support?
  • Where are my Hope and my Deliverance?
  • Re-Defining Forward Movement
  • Finding the End of the Island

On the journey, the old man meets several individuals who help him re-examine what he is experiencing, where he is going, what he hopes to find, and what other lessons might be part of his journey. I particularly liked the author’s reflections in chapter 4 on “Where is the Divine in my Suffering?” His analogy of God being in both the tidal wave and the tidal marsh were poignant and personally meaningful to me.

At first, this structure is somewhat confusing and disjointed. (Perhaps a better “How to Use This Book” section is needed?) However, because of the nature of the questions which Tucker addresses, having “space” in between the sections of the old man’s story is helpful for allowing the reader to engage and reflect. This is not a book to read at one sitting. In fact, if you rush through it, you will miss the beauty of the struggle in this journey we are all on – of life and death, of hope and discouragement, of suffering and release.

Tucker’s premise is that our life’s journeys are not about “solving” the problem of pain. It is not meant to provide simple strategies or pointers. There aren’t Bible verses to read and write down your reflections with Jesus as your Best Friend in suffering and God always bringing healing and relief. (In fairness, there were many places where I found it was easy enough to be drawn back into Scripture and journal. It just was more raw than pretty, honest than victorious.)

This book is also going to make the more conservative readers among us a tad uncomfortable, for the author invites us to dwell with the wider views of spirituality, and to engage in mindfulness practices around the journey we are all struggling through. However, you will be invited to explore fresh and new ways of walking through your own personal, painful, rough patches. And that, in itself, is enough. For God is enough.

As the author says, “The totality of all our questions will never be resolved completely. For remember, I am talking here about movement – not a neat, linear journey.”

Here’s to the messiness and the reality that God is there in the mix. Always.

*****

The End of the Island by Jeffrey C. Tucker. © 2016 Eugene, OR. Resource Publications (Wipf and Stock): Paperback, 156 pages.

Disclosure of Material Connection: I was provided this book without cost from the publisher and was not required to give a positive review. The opinions I have expressed are my own. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255 : “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

When less than perfect is… perfect!

Deb

IMG_0629

My travels today took me all over suburbia, from the newest neighborhoods with massive custom homes to the post-World War 2 bungalows. In the outer ‘burbs, there are many places where the agricultural community lives side-by-side with modern amenities. Driving on one back road, I chuckled at the sight of a herd of white-faced Herefords grazing in a field next to a large strip mall and posh tennis club.

And then, I saw this barn.

It was barely standing, with holes in the siding and the roof, and piled debris from the building on one side of the structure. (I actually did some fast and furious U-turns in order to go back and take a second look, and snap this picture.)

Directly across the street sat a “perfect” home with a wrap-around porch, vinyl siding, three-car garage and well-tended landscaping. (Even with the dregs of the recent snowstorm piled along the driveway and front walk, you could tell the hedges were clipped to perfection!)

Shack and Chic. Country and City. Cows and Suburbia. Dilapidated and Perfect.  The journeys they find themselves on are all different, and yet the same.

driving

Working in hospice, I become invested in the lives and needs of my patients. I listen to their stories, their questions, their philosophical reflections. I enjoy photos, listen to music, help write letters, and read Scripture to them. I learn so much. Oh, do I learn!

What you see on the outside can be deceiving. Inside the walls of beautiful homes, there are stories of great joy, worry and regret. Down the hall from a perfectly decorated game room, there is a hospital bed, or a countertop lined with bottles of pills. A camper may sit in the driveway, still covered in snow, the owner only dreaming of a drive to the Florida Keys.

Sometimes the contrast is quite striking. From outward appearances, they want for nothing: gourmet food, 24/7 private duty staff, gracious living with all the amenities. But once the door is closed and there is opportunity to share, there’s a different story. The ache of regrets and missed opportunities colors the few days a family may have.

In another home, you see there are needed repairs. It’s clear that the breadwinner is no longer working. The budget is shot after chemo and surgeries and hospitalizations, and there are grave financial concerns. The bills outlast the income, but laughter and joy color precious moments.

barn croppedOne really can’t tell from the outside what’s really happening on the inside. That family who looks perfect, is not…

And the impossibly dilapidated structure is actually quite beautiful…

And so, my chaplain’s heart stopped to wonder…

Do I see with an open heart and clear eyes what is truly going on behind the scenes? Or am I caught up in appearances and flashy “perfection?”

The bottom line is… we can never truly know what is going on in the human heart. I have learned this, to my embarrassment, when I make an assumption without taking time to really listen and absorb the facts.

Tonight I look around at our warm and inviting home, cats purring the couch beside me and many “creature comforts” at my disposal. Life is not perfect, but it is pretty darn good. May I not take that for granted.

Thanks be to God.

A HIPAA Farewell

Deb

One of the difficulties of being a hospice chaplain is that I hear so many stories that are not told. I can’t tell you the patient’s name, age or gender. I can’t tell you about life experiences, diagnoses or living situation. Because of HIPAA regulations, I am honoring their privacy and the nation’s healthcare policy. I want to write more about the people I journey with each week… but this is all I can say:

In memory...
In memory…

Dear Patient,

I honor your memory.
I listened to your stories, and heard your fears.
I laughed at your relative’s antics and celebrated their accomplishments.
I wondered with you at why you were still alive.

I celebrate your courage.
You trusted the hospice team with helping you cope with your pain and discomfort.
You were honest in giving us feedback.
You accepted help, increasingly, grudgingly, and allowed us to see your independence and your determination.

You touched my heart.
You shared your witticisms, your honest evaluation of life, your worries.
We walked many miles in your questions and memories.
You taught me as I listened.

I know you are at peace.
Even though I know in my heart of hearts
that all of our hospice patients are close to death,
I wasn’t ready.
I didn’t want to accept it.
And yet it was God’s time.
It was the moment you were waiting for, praying for.
I know your family is sad but relieved.
I know we did our best to make your death gentle and peaceful.

I will miss you.
Until the next time —
Deb

“And When I Die” (Cross-Post)

Deb

Today I wrote a piece on RevGalBlogPals about a difficult but important topic. It’s about “aid-in-dying” and it is worthy of your thoughtful reflection and consideration. Here’s an excerpt…

As a chaplain, I have been a part of many conversations with families over end-of-life care. I know from personal and professional experience that they are brutal. While there are great resources and trained professionals to help and support the decision-making process, there is no way to express the heartaches that accompany it.

The scenarios I have witnessed came to mind as I read a recent news story about the recent death of Diane Rehm’s husband. Diane, a public radio personality, shared the details of her husband’s death by dehydration when his doctor could not and would not help him die faster in his end-stage Parkinsons disease. So, despite the best medical support and symptomatic relief possible, for nine days he refused food and drink, enduring discomfort and pain.

The full article is here: “The Pastoral is Political: And When I Die”

I’m grateful for the opportunity to offer my reflections and opinions on the RevGals blog. Please wander over there and check them out!