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.

Cake

We had several patients with birthdays this week. I missed the 102nd!! birthday party of one patient, but I was part of celebrations for two other patients. They were special moments, reminding us that the work we do is about life and the celebration of life. And cake.

One patient was impatient. There was too much talk, and too much time waiting for everyone to get there to sing "Happy Birthday." You shouldn't have to wait for cake. So a finger reached out and swiped off a finger-full of frosting. It doesn't matter whether you're 3 or 83 - a birthday is about the cake and the frosting (and "all the pretty girls" surrounding you.)

Our second patient was having a bad day, not in any physical pain, but in bed, kind of gloomy. The room was dim and there weren't a lot of personal belongings brightening up the space. But when we came in with a big chocolate cake and announced we were there to celebrate the birthday, we got a smile. As we sang "Happy Birthday" and applauded, our patient glowed and gave us a big smile. One bite of the cake was enough, so we left the rest of the piece by the bedside "for later."

It was a good day. There was cake and frosting; singing and celebration. And two people were reminded that they have not been forgotten, that we can still celebrate and sing and laugh together as we give thanks for the blessing of time . . . and for one more piece of cake!

TGIN (Thank God it's November!)

Was it the changing weather? The cold? The increasing hours of darkness? Was it just something that happens now and again?

I don't know what it was, but I know that in October we had death after death after death. I think that last month we had the most deaths in a single month in the three+ years I've been doing hospice work. I've had some people say: "You're doing hospice work. What did you expect?"

I know that most of my patients will die. I also know that some of them will plateau or improve and come off of hospice services. I'm used to that. I'm not used to days when 3 or 4 people die, followed by days when 2 people die, followed by days when 2 more people die. I'm not used to day after day of trying to figure out which dying patient, or which family, is more in need of my presence and support.

Hospice staff juggle lots of tasks, but sometimes information sessions, new patient assessments, and dying patients require too many balls in the air. Invariably one or another gets dropped and bounces until we are able to scoop it up and toss it back in the air.

As I look back at October, I'm not sure which makes me sadder - the deaths of patients who came on hospice service and died in a few days, patients whose names I barely remember; or the deaths of long-term patients, patients whom I got to know well, patients whose family members I know, at least as voices on the other end of the phone line. All I know is that there were too many of them.

And I'm grateful that in the midst of all this loss, I took time to take care of myself. I can't imagine what the month would have been like without healthy food, exercise, educational opportunities, time with family and colleagues, and enough sleep. I'm grateful that October also was filled with bright days with sunlight sparkling off orange, red, gold and green leaves and vivid blue skies. The crisp air, cider donuts, and time driving in the car between patients were moments of rejuvenation in a month that was altogether too dispiriting.

This week . . .

Working with hospice means that I spend my days surrounded by death and by life, often at the same time. This week I sat with a family as their mother was actively dying. I provided some education on the dying process and on pain management, I recited some prayers, but mostly I listened. The children held their mother's hand, stroked her forehead, and told stories. They laughed as they remembered family moments and as they spoke, the mother who had been lost to them by dementia over the past years became a vibrant presence in the room, even as her dying body struggled to take yet another breath.

This week I attended a wake. My Jewish sensibilities still make me uncomfortable with open caskets ("She looks so peaceful") no matter how often I've been exposed to them. And yet, going to the wake is a powerful moment of connection. It says to the family that we are haven't abandoned them. We're present for the dying, at the death or the pronouncement, and our care continues as we stay involved with the family for the year after their loved one dies. The wake also gives me the opportunity to view family dynamics and see what kind of support is present for the spouse, the child, the sibling. Knowing what kind of support is there helps us help the family.

This week I arrived at a nursing home just minutes after our patient died. The family was still present. I was able to offer our condolences, to remind them that our care and contact will continue for the next year, to give a needed hug, and to accompany them back to the bedside to offer final prayers. I hope my presence brought a measure of comfort. I know that the staff was grateful for my presence.

This week I wondered, as I often do, what rituals are there for the professional caregivers to help us when the deaths pile up around us. What does a funeral director or a chevra kadisha member do after they prepare a body for burial. How do they make a separation between their sacred work and their daily lives? I know of nurses whose custom when they get home is to strip off their work clothes, shower, wash their hair, and change into home clothes. Only then do they join their family, prepare dinner, read the mail. Others tell me they listen to specific music on their ride home to take them out of their professional caregiver role and back into their family role. I know of many personal rituals that we use to make a transition between what we do and who we are, but I wonder sometimes if we do enough to help us make the distinction.

This week I asked myself: How do I make sure that I am caring for myself and not being consumed by the care I give?

Oops

This week I was the one who broke one of the big nursing home "rules." I was the visitor who let a resident leave a locked unit.

I was covering for a colleague, visiting a dying patient in a nursing home that I don't normally cover. Although I used to be a chaplain in the building, I'm not the chaplain now so I'm not familiar with the residents; I only know the staff. As I was leaving the floor, I caught up to a gentleman who had just reached the elevator. I looked at him as I fumbled around trying to figure out how the elevator worked. (It used to have a nice covering over the "down" button so you had to use your keys or a pen through the grill to press the button. Now there is a full covering and a small metal piece on a chain that "locks" it in place. You have to pull out the metal piece, lift the cover and press the button, then close the cover and replace the metal piece. I got the metal piece out, but didn't know to lift the cover, so I was jabbing the metal piece every which way until I figured it out.)

While wondering if I was going to have to go to the nurse's station and get help with elevator instructions, I assessed the gentleman. He wore nice trousers and a long-sleeved white button-down shirt. He was shaved and his hair was combed. There was no noticeable wristband or ankle bracelet. There was minimal conversation, but we didn't know each other. Resident or family member? There was no way to tell. I've met a lot of men his age who come daily or twice a day to visit their wives on the dementia unit and he looked more put together than many of them.

So when he got into the elevator with me, I didn't ask if he was supposed to be there. (There's really no polite way - "Excuse me. Do you have dementia?" "Are you allowed off the floor?") But there must have been something, because when I got off the elevator I thought, "I should check with a staff member."

There was no need. Almost immediately a staff member assisting another resident looked at him and asked, "'Bob.' What are you doing here?" Another came and gently took his arm, "Here, let's go this way." And another, "What's 'Bob' doing off the floor?"

Today, when I again visited that nursing home, I was greeted (among other things) with, "I hear you let 'Bob' off the floor yesterday." I apologized. They laughed. I have the feeling that this happens often with 'Bob.'

In many of the nursing homes I visit there's a resident who doesn't quite seem to belong on the floor. Someone who is still walking around; someone who remembers the social graces and can provide polite chit-chat. Perhaps it's someone who is no longer safe living alone. Or a person whose family can no longer provide the amount of care they need. I've met many family members, especially spouses, who have run their own health into the ground while caring for a loved one with dementia, until the needs become too great and a nursing home or assisted living is the best option.

And I've met residents who ask me to "get me out of here." One wants me to gather up her medical records "RIGHT NOW" because she has "a medical appointment and needs the doctor to see" that she doesn't "belong on an Alzheimer's floor." Another wants me to call her lawyer. "You can see that I should be living on my own. My daughter put me here. She sold my car. She lives in the South. I have a cousin who will help me. I just need you to call." I always talk to the staff. Again and again I speak with residents (not my patients) who present well and just want my help to "go home." I know that they are no longer capable of caring for themselves (and I've asked.) I know some of the stories. And it breaks my heart that I can't help them (and that they can't remember that I can't help them, so they repeat the request the next time they see me and the next.) Some days the hardest part of my job isn't the hospice patients.

But the next time I'm waiting for the elevator (or struggling to circumvent the lock that keeps the residents in,) I'm going to take a second and a third look at those people who are waiting with me!

Again with the shofar

I had the shofar with me today. A Jewish patient who was not inclined to hear it a few weeks ago - he had other things on his mind that day, and didn't recognize the shofar - said "yes," he'd enjoy hearing it. So I let everyone around know what I would be doing and then blew a mighty "tekiya."

"You shouldn't do that when you're crossing the street," he told me. "Too many people might get hurt."

Driving down the highway . . .

It's been one of those weeks.

I've driven between 70 and 90 miles each day this week Normally I try to schedule my day so that the facilities I visit are near each other. But with Holy Days, new admissions, visits that had to be made this week, and patients who were not doing well, I was going from one end of my territory to the other - every day.

This time of the year, however, I like long car rides. I use the time for Yom Kippur preparation. Not for work - but for me. I listen to podcasts - programs like "Speaking of Faith" that either have specific High Holy Day programs or programs that are thematically linked to the Holy Days. I listen to music. The sounds of "Avinu Malchenu" and "U'nitanah Tokef" fill my car (and I turn the sound up, and sometimes hit the "repeat" button.)

As I drive I reflect on the ways I can be better and do better in the New Year. I think about my family and friends. I remember people who we lost in the old year. Often when I reach the nursing home I'm visiting, I spend a few extra minutes in the car listening to the end of a song or a section of a podcast.

Sometimes a word or phrase or musical piece reminds me of a book I recently read, or a sermon I heard, or some aspect of the holidays I've been ruminating over. I become lost in thought and the words or music become a muted background to my own thoughts. So far, and somewhat surprisingly, I've managed all this without missing my exit or getting lost.

It's been one of those weeks. But this week I've been happy to have the extra time on the road, as all the roads I've traveled have led me back to myself and forward to atonement.

Happy . . . Hanukah ? ?

One of the residents at a facility I visit is always happy to see me. "I love you, I love you," she has told me. She met me when I was her brother's hospice chaplain in the the same facility. I am grateful that she doesn't connect me with her loss or see me as a reminder of her sorrow.

Initially she recognized me by my kipah, now she recognizes me as me. Whenever she sees me, she gives me the appropriate Jewish greeting (or at least the Jewish greeting she knows.) "Happy Hanukah," she says. "Happy Hanukah." I thank her.

I saw her last week, just before Rosh HaShanah. She wished me a "Happy Hanukah."

I couldn't help noticing that the local Chabad has their hanukiya fully lit for their New Year observances. Perhaps she's right: it's always hanukah somewhere.

Tales of the shofar

The shofar's out of the cupboard and into my workplaces. So far:

My patient's eyes are open when a greet her - a rarity - perhaps due to the lunch-time visit. I greet her and mention the New Year. Her eyes close. I sound the shofar - the whole series - loudly. No reaction from her; her eyes remain closed. But the gentleman next to her turns to me and asks: "What the hell was that??!!"

I do a "service" for a nursing home with a younger population. Some sing along with "Avinu Malcheinu." Some "talk back" at me during the story (I love that!) We listen to Kol Nidre. And during the course of the service I sound the shofar. They are so appreciative. I get to go around the room afterward and everyone wants to shake my hand and wish me a "happy new year." And I shake all of their hands and wish them a "happy and blessed year" as well. It's a good thing that State isn't here to chastise me for not washing my hands in between every handshake. It may not meet universal precautions, but the moment and the touch far outweigh the benefit of trying to follow the letter of the law in this case.

I ask one of my facilities if they have any Jewish residents who would like to hear the shofar. "The only people we've ever seen in the building with a yarmulke are you and that examiner from the State. He hasn't been around lately." "Ok, thanks. I didn't think you had any Jewish residents, but I always like to ask." "What does it sound like? Will you blow it for us?" So I do.

I give the activity director of another facility a CD of High Holy Day music for her Jewish resident (not one of my patients.) "Thank you so much. I'll put it in her room. Her family will be so glad to hear you came by." So . . . out comes the shofar and with a few introductory remarks to the staff, family and patients present, I blow the shofar. The Jewish resident gives me a little smile. "Please let her family know that I also brought in the shofar so she could hear it."

My office thinks of it as good PR and outreach. I think of it as a mitzvah and my preparation for entering the Holy Days.

שנה טובה ומתוקה

May we all be blessed with a sweet and good New Year.

The unexpected . . . or what teenagers taught me about conversation

Some days hospice work bears a certain resemblance to working with teenagers. Anyone who has worked with (or had) teenagers knows that some of the best conversations you have are the ones that take place in the car. Whether it's the forced intimacy or the lack of eye contact, or just serendipity, a car ride can turn into an unexpected opportunity for sharing. Something special can take place in that moment. You can't plan for it or expect it or extend it. You can only experience it and give thanks for it.

Some days you have moments like that in hospice. Again, you can't plan it and you can't force it. And just because you had that special moment once with a patient or family, you can't expect it to happen again.

Much like moments in the car, some of these moments happen when I am not looking at my patient. This week I was sitting with a patient who does not talk a lot. He does like it, however, when the social worker or I sit quietly next to him and do our paperwork. He likes the company and the companionship.

The other day I sat next to him with a big afghan on my lap. The afghan belonged to another patient. It had been lost and then found in the laundry by a facility CNA. The yarn had broken in some places, been pulled out in others, and had open stitches that were unraveling. I had told the CNA that I would try to fix it. (Fortunately I usually carry knitting and had both a crochet hook and a yarn needle in my car.)

So I sat next to my patient and focused my attention on the yarn and the open stitches. I don't know whether it was my attention to the task, my awareness of some of his issues and concerns, or my thoughts focusing on Elul,  but as I talked with him about what I was doing it turned into one of those unplanned, special moments.

I commented that it could be a challenging task to try to fix something that had been torn or broken. "Yes," he said. I sewed some more and said, "I know I can't make this perfect, but at least I can mend some of the holes and keep it from getting worse." He agreed. Although he's not much of a talker, I realized he was very focused on my words and actions. So I continued to mend the afghan and talk about repairing the things we could, letting go of the things we couldn't, and forgiving ourselves for not being perfect. He would listen, make a tiny comment or a sound of acknowledgment. This continued until there was no more yarn to reattach.

I know that I got a great deal out of this unexpected moment and conversation. I think that he did as well, for I have an invitation to visit again . . . and to bring my knitting.

Sitting & knitting

We have a new patient. She's in her 90's. The family says she's "given up," she's "ready to go." The family is clearly not ready to let her go. They're willing to talk hospice, but they are hoping that the extra attention and services will tip her back on the side of living. I ask about volunteers. "She knits," they say. "Do you have someone who could come knit with her and maybe also pick up the stitches she drops?" "I knit," I say. "I'll see what I can do."

At my initial, and as it turns out, only, visit with the patient, she's curled up in the middle of her bed with the covers pulled up to the top of her head. She doesn't respond to my greeting or presence. So I sit down next to the bed, pull out my knitting, and knit. Eventually she says a word or two. As I sit there, a younger woman comes in. She's the daughter of another resident, a friend of my patient, a knitting companion. The younger woman and I talk about knitting. And then a voice comes from under the covers: "I think I'm dying."

Before I can even open my mouth to respond, possibly faster than the speed of light, the other woman says, "Oh no. You're not dying. You just need to eat more." My thoughts are unprintable. Eventually the other woman leaves. I continue to knit. And knit.

Finally I say, "So you think you're dying. What makes you think that?" She says, "I just don't feel well." She's silent and I knit some more.

Finally she says, "Am I dying?" I take a deep breath. "Everyone dies sooner or later . . . I think for you it will be sooner. You're not eating and you tell me that you just don't feel well." More silence. I've answered her question. I've told her what she needs to hear. She doesn't say anything else.

And a few days later she dies.

Indulging myself

I splurged last week. A small splurge, but on what appears to be a totally unnecessary purchase. I think of it, however, as an important indulgence. What kind of splurge inspired this posting? I bought a skinit for my work phone.

I could argue that I needed it to distinguish my phone from all the other phones on those rare occasions when we're all in the office, but that isn't the reason I bought it. (Although I think that was part of the reason I gave myself.) I could say it was because there was a special deal with free shipping, but if I hadn't bought one I would have not only not paid for shipping, but I would have also not paid to buy it. My real reason for buying it was that I could choose and upload my own picture.


In the past four months, we've had a number of family simchas. We've also had one very difficult, untimely loss. The picture on my skinit is a joyful, smiling photo from one of the simchas. I can't look at it without smiling. I look at it and remember how happy we all were. I look at it and I remember that the pain of our loss was also a part of the day. The photo reminds me that a month after one of the worst days in our lives, we celebrated one of the happiest.

When I see this photo as I'm working, I'm reminded that all of us have mixtures of love and loss, celebration and loneliness in our lives. It reminds me not to take my blessings for granted. It reminds me that joy may be followed by sorrow and then again, God willing, by joy. The photo helps me remember that I want to work to live, not live to work. It reminds me to turn off the phone when the day or the week is over.


The photograph is not a talisman. It won't protect me from the pain that comes with my work or the pain that comes with life. But I hope it will protect me from becoming callous or indifferent. I hope it will always make me smile. When I think about the joy the photo gives me, it is clear that this splurge was not an extravagance and not really an indulgence, but another important weapon in my battle against burnout.

Elul

One of my favorite things to do at this time of year is take my shofar with me to work. From the beginning of Elul until Yom Kippur, I have it with me. I sound it for my Jewish patients. I let the nursing homes where I work know what it is, why I have it, and that I will visit any Jewish resident so that they can hear the sounds of the shofar. In a nursing home with a younger, more alert, special needs population, the activity department and I schedule a program so that the Jewish residents can prepare for the New Year.

In a job where almost everyday provides the unexpected, I never know what to expect once I take out the shofar. I do a lot of education with staff and residents at this time of year. I never sound the shofar without making sure that everyone around me knows what I'm doing -- especially when I'm on a dementia unit.

Sometimes there are moments of serendipity, of grace. I'm in a nursing home doing a spiritual assessment on a new patient. We're meeting in a corner of the activity / dining room. The activity director, spotting my kipah, comes over to tell me that they are making "cards for the Jewish New Year." I am able to respond not only by coming over to meet the residents and talk about the meaning of the New Year, but by saying, "I have a ram's horn in the trunk of my car. May I go get it so that your residents can hear the sound of the New Year?" And while I have it, a nurse mentions a bed-bound Jewish resident down the hall and I am welcomed into her room so that she can hear the sound of the shofar. "Her family will be so happy when we let them know that you were here."

I'm visiting one of my Jewish patients. We sit in her room and I talk to her about the season. There's no response today, no eye contact, no acknowledgment that I'm present. I take out the shofar and blow it. Her head jerks up, her eyes open, and, for a moment, she's there.

Another patient, another home - my patient is a 100 + year old Holocaust survivor. We visit in front of her room, by the nurses' station where she sits each day. I take out the shofar -- Tekiah -- and the woman sitting next to her in the hallway glares at me and loudly asks, "What are you trying to do - wake the dead?"

Another survivor. Not yet my patient, but when I talk on the phone about hospice with her out-of-state son, he asks that I take in the shofar so that she can hear it. It turns out she's in a different place in her dementia. The shofar scares her. When I greet her in Hebrew or Yiddish she gets agitated and motions me to be silent. She responds to me and converses only when I greet her in Polish. Unfortunately my Polish extends only to "good morning," "how are you," and "thank you," but that doesn't stop her from taking my hand and talking to me - as long as the shofar is not in sight.

Once again it's Elul. This morning I opened my living room cabinet and took out my shofar. I don't know what the next month will bring, but I do know that for my Jewish patients it will include the sounds of the shofar as, together, we prepare to either close the Book of Life or to greet the New Year.

Again with the yarmulke . . .

This was my weekend to be on-call. There are a couple of differences in my on-call "look." Weekends on-call are the only time I wear jeans to work, although in the summer my weekend clothes are closer to my weekday work clothes. The big difference is that on Saturday on-call I don't wear a kipah. It's funny - as easy as it is to forget my kipah when it's on, I'm hyper-aware of its absence when I'm not wearing it. I almost feel as though I'm going to work naked; missing a vital part of my "uniform."

I walked into a facility yesterday to do some on-call visits. I said "hello" to a resident I often talk with on my way in and out. She looked at me and said, "You're not wearing your little . . ." and pointed to my head. "Right," I said, "my yarmulke. Well, I don't wear it when I'm working on the Sabbath." I didn't go into a lot of detail, simply explaining that Jews generally don't work on the Jewish Sabbath, so when I'm making on-call visits on the Sabbath I don't wear it.

I didn't want to get into an entire discussion on marat ayin (how things appear; not wanting to mislead a fellow Jew) and why I leave the kipah off. Although I consider myself an observant Jew, I am not a halachically observant Jew. In addition to working on some Shabbatot, there's the car I drive to the nursing home, the pen and paper I'm using to write up my visit notes, the BlackBerry that I use to check patient details, and the myriad of other non-Shabbasdik things involved in patient visits.

I leave the kipah off on Shabbat because I don't want to be a public Jew on that day. I don't want to advertise my religion. On a Shabbat on-call visit I just want to advertise the hospice presence. Of course, it's on my on-call days with no kipah, working in buildings where we have other chaplains during the week, and with staff who aren't familiar with me that I am most often mistaken for the hospice nurse. This weekend was no exception. "Yes, I think it's alright to skip a PPD on a hospice patient," I say, "but I'm not the nurse, I'm the chaplain. Let me call my nurse and get an answer to your question."

After a day on-call, disguised as "just another chaplain," it's a pleasure to put my kipah back on and enter the new work week as the Jewish chaplain.

"I assume you're a Christian."

I was visiting today with a patient and her daughter (really with the daughter, who's having a hard time facing the loss of her mom.) She was talking to me about her mother's faith; how long it's been since she "accepted the Lord." At that point she looked at me and said: "I assume you're a Christian." "No," I responded. A pause, and then I added, "But I understand the language."

It may seem like a funny response, but I do understand the language. And she's not the first person who has been concerned about my "relationship with Jesus" - I've had that discussion lately with several patients or family members. Today's woman took another look at me and said, "You're Jewish." "Yes." "I could tell from your headcovering." Last week's family member, after I initially missed her question about my salvation in our phone conversation, responded to my letting her know that I am a rabbi by letting me know that it was fine for me to visit her mother and to bless her because, "The Jews are God's chosen people."

Judaism is my spiritual "mother tongue." It is the lens through which I see the world. Most of my patients, however, are not Jewish. So I "translate" my religious language into theirs. I listen for the phrases in their conversations that tell me of their beliefs. I talk with them about this world and about the next (but instead I call it "the afterlife.") I affirm the lives of faith led by their loved ones. I reflect back to them the teachings that provide them comfort as they confront love and loss.

The religious differences may make me a better chaplain. I have to listen. I have to think about what they are saying and the meaning of the religious phrases they use. As I respond, I have to make sure that I have framed my response in the language they speak. I have to recognize my boundaries as well. I can't anoint a patient or absolve them of their sins. I have to reach out to their clergy, if they allow me to do so, or to clergy of their faith if they request it.

Often my kipah proclaims my faith so I don't get the questions I seem to have gotten lately. But whether patients and families know I'm Jewish or just know I'm the chaplain, my job is to let families know that I will listen to their spiritual needs, help them connect with a clergyperson if they wish, and accompany them on this journey.

Clergy burnout

Yesterday's New York Times had an interesting article on clergy burnout. The article spoke of the rising rate of "obesity, hypertension and depression" in clergy. There are a lot of reasons - lifestyle changes, the speed of modern life, the need to be present to our congregants 24/7 - but the one reason the article focuses on the most is the need to take more time off.

It can be tough to take time off sometimes, even when you take time off. When I was a congregational rabbi, I had to leave contact information when I went away whether my absence was business (convention) or personal (vacation.) That was a long time ago. I was a solo rabbi of a small congregation. I don't know what things are like now in small congregational life, but I can remember the tremendous feeling of freedom the first time I took a vacation after leaving my pulpit. No one knew where I was going (except family) and no one knew how to reach me (except family.) It was the feeling of freedom that let me know that my previous vacations had not, fully, been vacations. This was before the internet, before cell phones, before BlackBerrys and instant messaging and email, before the expectation of immediate responses to questions or needs. The contact information was for deaths or major crises. Still, the expectation was that in an emergency I'd come back.

I've had other jobs in the Jewish community that also came with expectations of long hours, contact during vacations to deal with crises, and the need for immediate responses to unexpected events. I was definitely burnt out when my last job ended. One of the nice things about the brief unemployment after that job was the chance to relax, reflect, catch up, and go away without worrying what I'd find on my desk when I returned.

Something I really appreciated when interviewing for hospice jobs was the concern about self-care. Our work can be difficult and some days, overwhelming. We're with people at some of the worst times in their lives. We help them try to make sense of what's happening, find meaning in loss, and craft the story of the life that's ending and their new world on the other side of loss. Each hospice interview I've had included questions like: "What will you do to take time for yourself?" "How do you think you'll be able to leave this work behind?" "What do you do for fun?" "When do you relax?"

In my job, when I'm on - I'm on. But when I'm away or off for a day or not on-call over the weekend - I'm off. There's no expectation to check in, no need to leave contact information, no worries about what will be on my desk when I return. We cover for each other. We make sure the work is done. We understand the need to take vacation time; to get away, to recharge ourselves, to rejuvenate. We may not do it as well as we could - we still need help and support to eat healthy food, to exercise our bodies, to challenge our brains, and to look for the everyday miracles that fill our world, but I know that I am much healthier as a rabbi in this job than I have been in others.

yarmulke

In addition to the times when wearing a kipah leads to serious discussions or requests for additional support (or "courtesy visits" as one of my fellow chaplains refers to them,) there are the unplanned moments of humor.

• I'm sitting at the nurses' station at an unnamed nursing home working on my visit notes. A patient (not one of mine) comes up to talk with me. The back story, which I find out later, is that she noticed the kipah and asked one of the facility nurses who I was. The nurse told her: "That's the rabbi."    
• Patient: "Oh. You're Jewish." Me: "Yes." Patient: "I thought you just liked to wear doilies on your head."

• I'm visiting a patient in a "memory unit" in an assisted living. A staff member comes up to me and notes that several of the women have noticed my headcovering. They are wondering where I'm from. A quick series of responses runs through my mind. I can't say, "I'm from "We Care For You Hospice" because that would violate HIPPA rules and patient privacy. I don't really want to say, "I'm from the "We Care For You Agency" for similar reasons. (Although I wear a name badge and most of the staff know where I'm from.) I could say, "I'm from 'Hometownville'," but I don't really think that's what they're asking. So I go for what seems to me to be the simplest answer:
• "Just tell them I'm a rabbi." Staff member: "What?" Me: "I'm a rabbi." The staff member walks over to the residents and says: "She's from A-rabb-ia."

To be perfectly fair, in the first case it was a particularly lacy, open crocheted kipah. And wearing a doily is sometimes a fashion choice on the dementia unit.

At the second facility they were playing Christmas music ("O Holy Night" when I walked in) even though it was a hot, late spring day.  I reported to my colleagues afterward that apparently I was only "alert and oriented x 1" that day. Which is to say, I knew my name, but it seemed that I didn't quite know the date (December? May?) or the place ('Happy Dawn Assisted Living'? A-rabb-ia?)

Some days all you can do is laugh.

Where did you get your faith?

One of my patients and I were talking about faith today. He was born Catholic but no longer practices. He had told our nurse that he believed in God and would be happy to have me visit. He's not much for talking - he told me that and told me that his voice was wearing out from talking with me (and there really wasn't that much talking.) Then he asked, "Where did you get your faith?"

Wow. I needed to think about that one. Where did I get my faith? I got it in part from my parents who joined a synagogue and sent me to religious school. I got it in part because I looked around at how the world works and knew there must have been something (someone) who created it. That was about as much as I could come up with during the visit. We talked a bit more - about people whose faith teaches them that there will be a reward after this world, about my belief that what's important is not whatever comes next but what we do here. He was tired, so I asked if we could talk about this more at our next visit. He agreed.

Before I could write a visit note or even begin to process the visit, my phone rang. I was needed somewhere else -- 50 + miles away.

I love driving. It gives me time to think, to ruminate, to dream. I've been known to miss a turn I know well because I'm mentally writing a sermon (or now a blog post) while I drive. So, with 50 + miles of highway I had plenty of time to think about where I got my faith. The more I thought, the more I think that my first answer -- my synagogue -- was more true than I realized. I don't remember a lot of details about what I learned in Sunday School, but I remember some formative experiences there. In sixth or seventh grade we studied comparative religion. At the end of the course, we had to write an evaluation. I wrote that we should have had teachers or guest speakers from the different faiths, because the teacher, Mr. H., "couldn't answer all my questions." Mr. H. wrote in reply, "God Himself couldn't answer all Chana's questions." It was in my synagogue and youth group that I learned I could ask as many questions as I wanted and that there were a lot of texts that spoke to my concerns. It was in my synagogue that I found a community, teachers, rabbis, mentors. It was through the synagogue that I went on to advanced Jewish learning and had pivotal experiences, including significant time spent in Israel.

Where did I get my faith? I got it from Jewish texts, from Jewish experiences, from friends, and from my rabbis. I get it through the work I do and the people I meet. And today I was reminded that in the work I do, I get so much more than I give.

kipah / yarmulke

I wear a kipah when I'm at work. Some days it's just part of my work wardrobe, like my name badge. Of course, I do like to match it to my clothing or the season. It's been awfully hot lately, so I've been wearing my summer "watermelon" kipah.Whenever I wear it, someone will do a double take and ask "Is that a watermelon?"

That's not the usual response. Usually, at least initially, people say either "Why do you wear that?" or "I didn't know women could wear one of those." To the "why" question I respond that I'm a rabbi (while in my head, I hear Kol B'Seder singing "The Kipah Song" - "Kipah, yarmulke, shows the world you're a Jew.") It may seem like a simplistic answer, but on days when a facility social worker or activity staff member chases me into the elevator or out of the building "Rabbi, can I talk with you a minute," the kipah as identification serves its purpose. They know who I am. They spot me by the brightly colored, crocheted head covering. Whether it's a question about one of my patients or, more typically, a request that I visit a Jewish patient who's not on hospice, or blow shofar, or supply holiday music or readings, the kipah assures that they notice me. "I've been hoping to catch you." "I'm so glad I saw you when you walked by." In the busy nursing home world, the sight of my kipah reminds them that they had a question for me.

The "I didn't know" or the "You must be Jewish" comments lead to theological discussions or educational opportunities. I never know where those discussions will go. The timing isn't always convenient and sometimes the topic doesn't lend itself to a quick answer, but the kipah gives me the chance to have conversations that would otherwise pass by.

There's another reason for the kipah. It reminds me that I'm a rabbi, that I represent the Jewish community - sometimes to people who have never spoken to a Jew. The kipah reminds me to be aware of what I say and what I do. While I certainly don't speak for the Jewish community, a person's encounter with me may form their impression of who a Jew is or what a Jew believes or how a Jew acts. The kipah is my reminder of the responsibility that comes with my title and the work I do.

And then there are the unexpected comments, the unplanned moments, the laughter that sometimes comes my way because of the kipah. But that's another post.

The State

One of the big concerns in nursing homes is the visit from The State. Periodically (I have no idea how often) the Department of Public Health (DPH) comes in and surveys the records, charts, and files. The goal of the nursing home is to have a survey with no deficiencies.

Ideally, all of us want to give good care. We want to be attentive to our patients' needs, caring in our interactions, manage pain, prevent falls, etc. And, of course, we want to document that we have done all of this without making every visit note sound like every other visit note. We want to individualize the care we give, even when our care plan forms don't always give us enough choice in our check boxes to show that we're doing so.

Some days it feels as though all we do is check off boxes and write narratives. Some days it feels as though we spend more time documenting what we do than doing what we do.

Yesterday, I was "snagged" by The State. As I was leaving a nursing home, a DPH worker stopped me to ask some questions. After telling her I was an outside provider, and thus ensuring that they knew there were hospice patients in the building, she asked a few questions about our patients. One of the things DPH looks at is coordination of care. Does the nursing home staff talk to the hospice staff? Do we collaborate on the care plan? Do we work in coordination or in competition?

While internally hoping that I had checked all the appropriate boxes on my forms and that my narratives were complete, I was pleased to be able to talk a bit about this nursing home. Not just because we do coordinate care, but because the staff in this nursing home are caring and attentive. They give superb care to some very challenging patients. It is one of my favorite places to visit. It was nice to be able to share this outside the circle of my co-workers (who feel the same way) and beyond the nursing home staff (whom we have also told how much we enjoy coming to their facility.)

Still, the next time DPH is in one of the facilities I serve, I hope I slip though the building without their notice.

Signage

On a nursing home door:

"Door is alarmed."

It looked pretty calm to me. Perhaps the calm was a facade.

Always good to laugh

A sign I saw today in a staff bathroom at a nameless facility:

ALL STAFF
WHEN your
Done using the
toilet Please
giggle the handle
or it will not
Stop Running.

So I giggled. The toilet did not find it amusing.

Health care

There were two articles in the New York Times last week that spoke to some of the issues I face as a chaplain. The first dealt with issues surrounding the medical decisions people make. The author writes about the use of medical resources and the ways that patients are often persuaded or pressured to make medical decisions that may not be in their long term best interests. The other reported on delerium and hallucinations in elderly hospital patients.

When I meet with families we often address the issues of medical decisions they have made before they decide on hospice. There is the gentleman whose wife persuaded him to get a feeding tube "to give him the strength to try one more" kind of treatment. The treatment didn't work and now they're tied to a feeding tube that he never really wanted and she, and the children, no longer want in place. However there's little documentation that he acquiesced to the feeding tube "just for them." Even though there's plenty of documentation that this is not a treatment he would want given his current health, the doctor is uncomfortable removing the feeding tube. As in the New York Times article, there is the women with end stage dementia and a pacemaker. Instead of viewing her slowing heart as a natural part of reaching the end of life, it's viewed as a problem that needs to be fixed. There's the patient who is a "full code" and whose children don't want a DNR (a whole issue in and of itself.) Some patients and families say that the aggressive treatment was "right at the time," but now want it stopped. Others feel that it was never right but they felt they "had no choice."

And then there is the issue of hospitalization. In addition to the hallucinations and delerium that patients often face, there is also the fact that hospitals are not always the best choice for elderly patients. Often a nursing home can provide the care that one of their residents needs without the disruption and disorientation that comes with hospitalization. For patients with dementia, the unfamiliar surroundings and staff are especially disruptive. Patients who are mobile in their own homes, whether private homes, assisted living or nursing homes, are kept in bed or in a chair because they are a "fall risk." In addition, virtually every nursing home I've visited has stories of elderly patients sent out to the hospital with intact skin who return with skin breakdown and pressure sores.

Sometimes it seems that just because we can - insert a feeding tube or a pacemaker, send a resident out for specialized treatment, try an intervention that may be helpful - we think that we should. Sometimes the best thing we can do for a patient, a parent, a friend is to do nothing medically. Sometimes the best we can do is to look at the quality of life and provide the best quality we can for however long a person has. Medical intervention is not always the answer. We need to look at the whole patient, the whole family, not just a single symptom or two. We are more than our diseases, more than "the little old lady in bed A." All too often our health care system misses the person as it focuses on the disease.

Unfinished business

Sometimes we have a patient who is declining, declining, declining, declining or actively dying, but, somehow, just keeps on going. We wait. We watch. We stand vigil. Well, really, we sit vigil.

At hospice rounds someone asks, "How is it that Mrs. S. is still with us?" or someone comments: "Mr. G. really needs to go to heaven."

We don't have an answer. As a chaplain, I get to say that matters of life and death are in God's hands, not ours. And I believe that. Because we really don't have an answer. Some people begin their process of active dying and are gone in a few hours or a day, or two. Others last and linger and fade and get more and more gaunt, but they don't die. It has nothing to do with medication. They can be on heavy doses of morphine to control their pain; they can be on minimal medication with no indications of pain.

We hold their hands. We play soothing music. We let them know that they are not alone. The family asks "when?" and "how long?" We don't have an answer. But sometimes we get a hint. Mrs. S. is talking to people we don't see. Mr. G. is apologizing for something, we don't know for what. One is calling out "I love you."

And we get a hint that there is some unfinished business; a lost connection, something that wasn't said or done, something that still holds them here while their body is doing everything it can to leave. Sometimes we help bring someone in and that is the business that is holding someone here. A lot of times, though, we don't know why someone is still here. Or "how long." So we sit vigil. And hold hands. And say "I love you." Sometimes that is enough.

you never know

I have a patient who doesn't initiate conversation, but will raise her head and look at me in response to her name. Many times she'll be praying "Hail Mary" in a barely audible voice. I will usually say a prayer while I'm with her. I'll talk with her or sit in silence if I run out of what to say or if she looks more tired than she usually does.

Today when I updated her daughter about my visit, she told me that she had visited her mother last week. My patient did not say a lot to her daughter, but when her daughter prayed with her and mentioned that she knew the hospice chaplain prayed with her my patient responded, "Chana." Later she told her daughter, "she's Jewish."

I knew she hears my prayers because she will often join with me. I didn't know that she knew my name, that she was aware that I don't share her faith, or that she remembered my visits. You never know when you're making a connection....

Tricks of the trade

It's easy to learn about being a chaplain. It's much harder becoming one. Applying book learning is difficult when you're sitting next to someone who doesn't respond and you're thinking, "O dear God, what do I do next?" Time seems to expand, minutes turning into hours, as you sit and think of every possible intervention. You try one. No response. You desperately try another. No response. A third. "How did the previous chaplain manage to spend 30 minutes with this person," you wonder. And then you start to learn the secrets and the tricks of the trade.

The hardest thing to learn is to do nothing. I learned it from some of my Christian colleagues - Ministry of Presence - or, as a friend explained it to me: "Don't just do something, stand there!" It's difficult to just be with someone; to stay in the moment. It's easy to have your mind wander. "What will I cook for dinner?" "Have I been here too long - what will the traffic be like when I leave?" But when I stay in the moment, I connect with patients. They know I'm there. That's one of the interesting things about dementia. A patient who can no longer talk can't be fooled by words, by a "chipper" tone of voice, by a fake smile. They read body language. They know if I'm not present. Often when I relax, they relax. When I really smile at them or laugh, they smile and laugh in return. We make a connection. In that connection, we transcend the boundaries of time. Instead of minutes turning into hours, time ceases to matter. We're just there, in the moment, together.

I've learned other "tricks" in my work. But the best, the most useful, and some days the hardest of all, is to just be there.

"Can you hear?"

I was sitting with a new patient as part of my initial assessment. The following conversation took place:

Patient to me: "Can you hear?"

Me, puzzled: "Yes?"

Patient: "What do you hear?"

Me, listening intently: "I hear a machine running on the other side of the room."

Silence.

More silence.

Then I asked: "What do you hear?"

Patient: "Voices."

No answer as to what the voices were saying. I sat silently while my patient looked off in the distance and continued to listen.

"I'm going to put on my dress and go dancing."

A lot of time when people talk about memory loss and Alzheimer's or other forms of dementia, they talk about losing your memory backwards - losing what is most recent first and holding on to earliest memories the longest. We usually use this simple explanation to talk about short term and long term memory. But when we do this, we often ignore the fact that there are many types of memory (or many components to a single memory.) There is body memory, sense memory or emotional memory, working memory, episodic memory and more.

As I continue to work with this population, I keep reading and learning about memory. Two books that I found very helpful are John Zeisel's I'm Still Here and Forget Memory: Creating Better Lives for People with Dementia by Anne Davis Basting. But book learning only takes you so far. Much more of my learning is experiential and comes from spending time with my patients.

Every time I think I understand dementia, I have an encounter with someone that teaches me that I only know a little bit. I meet a woman and say, "It's nice to meet you." She responds, "I'm happy to meet you." This is going well, I think, and I continue, "My name is Chana Sorel." She says, "Chana. That's a nice pumpkin. I go walking. My stone is my daughter, my friend. And you? Who did the plant go?" And she continues. It sounds like speech. There are words I recognize. She looks like what she's saying makes perfect sense. And I have no clue. So I respond to the tone or to a word or phrase that maybe makes sense to me. And she smiles. And I smile. And we talk. Finally I say, "Thank you for talking with me. May I come visit you again?" And she says, "It was nice to meet you." Her social memory is intact (at least in the moment) even if her words are incomprehensible.

One woman's words are clear, but not responsive. "Hello. I'm pleased to meet you," I say. "Oh," she says. "You play the piano? Play something for us." And I'm dumbstruck, without a response.

Someone else mostly hums. Some days she says a word or two, or she laughs. I start singing "Michael Row the Boat Ashore" and suddenly she's humming "Michael Row the Boat Ashore." I search my brain for every song I know that might get a response. Soon the whole room is singing. Other patients are asking, "What are we going to sing next?" And my patient is humming along to every song we sing.

I walk by a room and a gentleman has a sewing machine. In other room a woman pulls out her knitting and another crochets an afghan just like dozens she has already made for her children and grandchildren. The commonality: they all have dementia. And they are all human beings making connections with us any way they can.

As I visit with a woman, she looks down the hall at something only she sees and says, "I'm going to put on my dress and go dancing." I hope when my turn comes I'll be going dancing too.

Easy to love

Referring to patients as "cute" is not politically correct. Some people will talk about how "cute" is demeaning or patronizing. I understand this, I really do. And yet I do have patients who I think are cute. There is the woman who, when I sit down to spend time with her, grabs my hand and kisses it. As she's doing this, she says "I love you, honest to God I do." And I respond, "I love you too." Her affection, her demeanor, her attitude brightens my day. I know she has dementia; that she doesn't remember that I've visited before. I know she tells other people she loves them and I know she makes fun of other people - probably of me too when I go to visit someone else. But I love to visit her. And she thinks I'm cute.

I stop in to see a gentleman and ask, "How are you today?" He responds, "I'll show you," and gets up and does a little dance. Out of breath, he sits back down and gives me a big smile. I visit someone else, begin to tell her who I am, and before I finish my introduction she says, "Oh, I know you. You gave me my rosary." Later she says, "I always feel uplifted when you come to see me."

Perhaps they're not "cute." Maybe they're just easy to love. I'm the one whose day is uplifted, who feels loved, who gets to laugh and dance and sing when I visit them.

As I was visiting one of my sweetest, "cutest" patients today, I thought about what it means to be cute. Maybe, as with babies, it's an adaptive advantage to be cute when you're old. It's not fun to become frail and dependent. If we see someone as "cute," we can push away for a moment our own fears of aging and dying and really be there, be present, for our patient. With babies, the cute outweighs the "ick" factor. With babies we get to watch them change and grow and learn - and we know that "frail" and "helpless" and "dependent" are just for right now. At the other end of life, however, we watch people change and forget and need more and more assistance. It gets harder and harder for the family. While it, too, may be just for right now, when the "right now" is over we've lost someone we loved. Or, with dementia, we lose the one we love over and over again, piece by piece. Is it easier when that person is "sweet" or "cute?" I don't really think so. But if "cute" gets you in the room, if it means you come again and again to visit, and enables you to see the essence, the soul, of the person you are with, maybe it's not so bad.

Seeing ghosts

As I travel around town I often have the feeling that I'm seeing ghosts. Perhaps "ghosts" is not the right word. I'm seeing memories. I look off to the side as I barrel down the highway and there is M's house with the big picture window where she watched the snow and the birds and the dog. I go under an overpass and remember the road to R's small house. I think about his caregivers and the "family" he brought together and wonder how they are doing. I travel a road that I think is new - but wait - if I turn to the right doesn't that bring me to . . . what-was-her-name's house? I was only there one time but I can picture the couch where she rested, just inside the front door.

I remember the places, the roads, the furniture, where we sat and what we said, but I can't remember all the names. I remember this one's name and that one's caretaker. I remember the cat that sat and purred and cuddled up to my patient and the dog that barked as if I was the enemy coming onto his turf.

In the nursing home I pass by the rooms where I spent so much time. Now there are different names on the doors. The family pictures have been replaced by sports banners. The stuffed animal is gone. It doesn't look the same, but out of the corner of my eye I think I see . . . no . . . he's gone. It's an illusion, a wisp, a memory.

I don't really believe that the spirits of my patients are hanging around waiting to manifest themselves as I drive by, but my memories of them remain a part of my life. This is the road. There is the house. That was the room.

I remember. May their memory be for a blessing.