#BlogElul -- Inventory time

Am I ready for Elul? Time to take inventory.

Elul check list:

• Rosh Hashana cards for my Jewish families who lost someone in the past year
• handouts for holiday programs in facilities
• resources for facilities for Holy Day programs
•  DVDs of services
• list of congregations that stream services
• CDs of Holy Day music
• Shofar in the car:
•  for my Jewish patients (make sure they're all seen this month)
• for any Jewish residents in the facilities I'm in this month
• for my colleagues at IDT
•  haircut
•  new clothes 

And an unexpected memory from last year:

You wash your hands A LOT in health care. Everyone says to sing "happy birthday" while you wash then to make sure you're doing it thoroughly and for long enough. After a number of Holy Day programs and visits and music and shofar I suddenly noticed that my hand-washing music had changed. As I lathered and scrubbed, I listened and realized that my go-to tune had suddenly become "Avinu Malkeinu."

Caregiving

Five minute response to the writing prompt: "Write about a caregiving experience that moved you."

He was dying. He had been dying for a long time, but not really dying. Eating less. Drinking little. He still said a word or two. He enjoyed music. Was calmed by touch. The sun shining on his face made him smile. But he was sleeping more and more. Less responsive. Less present. And now he was really dying.

The family had all been in - children flying in from far away, his wife at his bedside. They stayed late into the night. Or early into the morning. At this point it was hard to know which. They told him it was OK to go.

Clergy visited. Prayers were said. Everyone was ready. But still he did not go. Morning came. He was still here. Again they gathered. His wife of oh-so-many years stroking his head, caressing his arm. "Oh my beautiful boy."

Families

End of life can bring out the best in families. They can come together, tell stories, hold hands, celebrate a life, and just be present. They may have lots of questions about the dying process, about medications, about what they should be doing, and about what to do next. They may need coaching, hand-holding, education, support, and guidance, but they pull together and they pull through.

Unfortunately end of life can also bring out the worst in families. They can bicker over property and money. They can argue over care and debate treatment options. They can become mired in what they want and lose sight of what the dying person wanted.

One of the saddest things I see is when a family lets their conflicts get in the way of being there with and for their loved one. It's not just a family fighting at a bedside or in the hallway, but it's the family that doesn't communicate that gets to me. For some families it's a time for healing or letting go. I see siblings going above and beyond to contact the estranged sibling or driving the streets to find the homeless sibling. They sacrifice some of their remaining time with their loved one to try and bring repair to the relationship.

And others don't.  There is so much anger in the relationship (admittedly often deserved.) The caregiver knows how to reach her siblings or his aunts and uncles or the missing grandchildren, but doesn't. As I sit with my dying patients in these circumstances, I wonder how the family members will feel when they get the call, if they get the call, that their loved one has died.

And I know I can't fix it. And I know it's not my role. And I sit with my patient and hold his hand, and play music for her, and say deathbed prayers, and try my best to be present. And I am sad for all the lost opportunities and missed chances.

"The Next Holiday is:"

I usually wear a watch that tells me the date. I don't need to do so - my work phone also tells me the date as does my personal cell phone. And most of the time I know the date. Despite this, every time I write a visit note, or sit down to write a group of notes, I look at my watch or the unit calendar for the date.

I do this even though virtually every nursing home unit I visit has some variation of the same sign, telling me the date:

Today is: Monday   May 16, 2011

The weather is: cold  rainy

The season is:  Spring

The next holiday is:  _________

It's "The next holiday is" part of the sign that amuses me. I don't know if it is dependent on the placards that come with the sign, the calendar that the staff look at, their knowledge of holidays, random chance, or just personal whims, but "the next holiday" is not always consistent.

Last month I was on one unit and "the next holiday" was Easter. I went upstairs and in another unit, in the same building, "the next holiday" was Passover. The next day I was in a different nursing home and "the next holiday" was Good Friday.

This week I have seen "the next holiday" as Armed Forces Day (May 21) and Memorial Day (May 30.) (I don't expect that I will see Shavuot, nor is any nursing home I visit counting the Omer. ) Right after Memorial Day, the signs will battle between Flag Day and Father's Day. They'll then stay consistent with The Fourth of July and then Labor Day, but come the Jewish Holy Days, Columbus Day, and various other fall holidays, "the next holiday" will again differ from place to place and unit to unit.

Perhaps this is why I need my watch. It doesn't focus on "the next holiday" but just on a number between 1 - 31. And most of the time the number it tells me really is that day's date.

Too soon

One of my patients died last week. On the face of it, there's nothing novel about that sentence. I could probably begin a posting every week with those words.

Some losses, though, are harder than others. When you share someone's life for six months, learning her history, listening to her stories, reluctantly leaving her to visit another patient; when the music she loved plays unexpectedly on your ipod and you remember her tears as she sang along, it's hard to let go.

It's also hard remembering the most recent visits. She asked, "Am I going to die?" I answered and we both had tears in our eyes. "I never thought I'd die," she said.

I've thought about that visit a lot lately. Obviously, a patient on hospice knows her prognosis, as do her nurses, her aides, her social workers and chaplains.

Any one of us can, on any day, acknowledge that one day we too will die. But her words ring so true. I know that one day I will die, but I imagine it far off in the future. And when that day comes, it will probably seem too soon to me, no matter how old I am. And I expect that, if you ask me, I too would say, as she did, "I never thought I'd die."

May her memory be a blessing.

Al hanisim

I was working this morning, driving to an on-call visit and listening to the radio. The radio program came to an end and the station began to broadcast a Sunday church service. This is usually my cue to change the station, but today I thought I'd listen. The service being broadcast was from a Unitarian Universalist church. I'm not sure why I decided to listen - perhaps because I recently lost a patient who identified as UU. I thought of him this morning when the service came on and I didn't change the channel.

At the beginning of the service, the service leader mentioned that it was Chanukah on the Jewish calendar. One of the song selections was "Light One Candle" and the congregation's educator would speak about Chanukah. That got my attention - what would she say?

She spoke about Chanukah as a holiday of light. She went on to equate the Chanukah lights to the use of light in many other religious traditions. I understood her connections - the UU religion is marked by theological diversity. I don't know who was sitting in the congregation (or listening on the radio) or their specific faith backgrounds, but listening to her talk they could link their beliefs to the message she was giving.

My problem came a little earlier in her talk. She spoke of the day's worth of oil that lasted eight days as she explained the holiday. She then went on to say, "but the oil is unimportant." Unimportant?!?! If you're focusing on light, how can that which caused the light be unimportant to the story?

Really, however, I had a bigger problem with her talk. Lights are important to Chanukah; one of the holiday's names is "Festival of Lights" ("chag urim" in Hebrew.) Lights are lovely. Lighting up the darkness on these cold winter nights is a wonderful thing. And the Chanukah lights glow even more brightly because they are lit in the days of a waning moon into the new moon. But for me Chanukah is not about lights - it's about miracles.

The prayers when we say the daily Amidah and later when we light the Chanukah menorah focus on the nisim, the miracles that God performed for our ancestors at this season. Last week, as I was preparing the reflection for our hospice Interdisciplinary Team Meeting, I was thinking about Chanukah. And I was thinking about miracles.

I believe that our lives are filled with miracles. There are the "everyday miracles" (as the Reform siddur labels the daily blessings) - the miracles of breath, of sight, of awareness, of freedom, of being created in the ways we are created. There are the miracles of love, and connection, and relationship.

There are the miracles I see in hospice work. I've viewed times when families find healing in the face of death. I've seen someone arrive at "just the right time" or somehow say exactly the right words. I've walked onto a nursing home unit and been greeted with "Thank God you are here." (And often when my presence was not on my planned weekly schedule. What was it that brought me to this place at this precise time?) 

When it comes to miracles, I know we can't stop the angel of death from coming; all of us will meet him one day. But we can push back, and there are times when we can delay his arrival.

Part of my job is to be present, to watch for the miracles, and to name them. Chanukah reminds me that miracles do exist. They existed for our ancestors at this season, and they exist for us in these days.

Chag urim sama'ach! May our days be filled with light and may we be open to and aware of the miracles that daily fill our lives.

"Tell me in small words."

I was following up on a hospice referral this week and the nursing home staff told me that there was just one problem - the patient didn't have a payer source. "What?" I said. "There's no payer source." "I'm a chaplain. Tell me in small words," I replied.  Once they finished laughing, they explained to me how this patient with an insurance company managed Medicare plan couldn't access benefits that general Medicare recipients have. It was one of several long, convoluted, and frustrating conversations I had around the issue.

Putting aside my personal feelings about this company and this issue, it occurred to me that there is a real benefit in getting and giving explanations "in small words." Hospice has a lot of jargon, as does health care in general. Those of us who work in any part of it become familiar with the lingo. At this point I can talk about "scheduled" medication vs PRN medication with the best of them. I know the medications we generally use and I usually understand what our nurses are talking about. When I have a patient in pain I know how  to talk with a nursing home med nurse.

But when talking with our nurses and, especially, when talking with patients and families, I tend to use small words. I talk about a patient being "short of breath." I don't say he has "dyspnea." I talk about someone losing weight and "appearing gaunt" rather than saying she's "cachectic." I will mention apnea to families, but I always describe what that means and talk about what they will observe when a dying person has apnea.

I've also realized that I try to describe medical end-of-life issues in concrete everyday terms. For an actively dying patient with a fever that isn't responding to medication, I talk about the "body's thermostat" which is no longer working. For other questions I may talk about the "body's electric system." It isn't necessarily how a nurse would describe end-of-life medical issues, but the metaphors are the ones that work for me in understanding what happens as the body ceases to function. They also seem to be metaphors that help families understand what is happening.

I know lots of "big words," but I am convinced that sometimes the simplest, smallest words are the best way we can communicate. I'm going to keep the sentence "tell me in small words" in mind as I work with families in the hope that by using "small words" we will better understand and communicate with each other.