The Myth of Wanting To Let Go

Guest author Lizzy Miles explains in her article here and in Pallimed.org why telling a dying loved one they can “let go” might not be such a hot plan; it might even make things worse:

The idea that a dying person is waiting for permission from their loved ones permeates many articles about the final days of dying. There is some truth to the idea that some patients may linger because they worry about the ones they are leaving behind. However, this concern about the bereaved is only one of many possible reasons that patients do not die when we think they should.
Consider this. How do you know it is okay to go? Have you died before? Do you know what it feels like? No, you don’t–none of us do. Dying is scary stuff, even for patients who have a strong belief in the afterlife or heaven.

Several years ago I had a patient, “Betty,” who told me that she was not afraid to die because she had a vision of her deceased husband and he told her everything was going to be okay. Then one day I was called to the house because she was “dying.” The chaplain, an aide, a few family members and I stood around the bed. The chaplain began to play music and the patient yelled out, “NO” several times. The patient continued to be in distress until we stopped the music and everyone left the room. She calmed down immediately. In hindsight we realized we had put pressure on her to die before she was ready. She died a few days later in the early hours of the morning with her favorite aide by her bedside.

When my aunt was dying, we had the bedside moment with all the family members praying and then my cousin stopped and said she was going to run an errand. I thought she was having a tough time and had to step away from the situation. That wasn’t the case. She told me later that at the time we were praying, she heard her mom’s voice in her head, saying, “I don’t know what you’re all doing, but I’m not going anywhere right now.”

On more than one occasion I have had friends and family question why a patient hadn’t died when they had told them it was okay to let go. The first thing I do is normalize their feelings of uncertainty and the difficulty of not knowing when. Often in these situations I explain the phenomenon of timing. I tell family members that dying is like planning a dinner party. There are a lot of components that need to happen for someone to be ready to go. I tell them sometimes a patient waits for someone to arrive and sometimes a patient waits for someone to leave. I instruct the family to not worry too much about the right conditions because they are difficult to anticipate and rarely what we expect. I tell the families that it will all make sense ‘afterwards’.

I had one woman who was questioning me on the length of time it took for her husband to die and I gave her a short example of another situation in which the patient was waiting for his spouse’s sister to arrive. Oddly enough, that was exactly what happened again. These patients weren’t waiting to see someone for themselves, they were waiting for someone to arrive who would be a source of support for the ones left behind.

One of the more challenging aspects of bedside hospice work is for staff to leave their own expectations and ideals at the door. The best advice I was given as a new social worker was to remember the acronym “NATO” which means Not Attached to Outcome. While we can give suggestions to families and friends on how to talk to or be with their loved one, we have to remember to stay neutral if they do not follow our guidance.

There are times where we, as staff, express our concern about patient situations behind the scenes. Have you heard a coworker express concern or thought to yourself:

There are “too many” people in the room.
Why aren’t they talking to the patient?
Why would they talk about those topics in front of the patient?
How could they talk that way in front of the patient?
Why isn’t there anyone at the bedside?
Why won’t the caregiver tell the patient it is okay to “let go”?
Why won’t they leave the patient’s bedside, even if for just a minute?

Caregiver actions at the bedside can sometimes confound and unsettle us because of our own ideas of a “good death.” However it is not up to us to define. We may actually be the ones who have to “let go” of the idea that we know what’s best for our patients.

This article was posted by Lizzy Miles on January 20,2017 in Pallimed.org. and reprinted here with permission.For the original article plus comments, see  at http://www.pallimed.org/2017/01/the-dying-dont-need-your-permission-to.html

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio and author of a book of happy hospice stories: Somewhere In Between: The Hokey Pokey, Chocolate Cake and the Shared Death Experience. Lizzy is best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW.

Touch-Tone A Prayer

As I entered the modest room, about a dozen friends and family were awkwardly standing all around the patient with his hospital bed as the hypnotic centerpiece. Xavier (pseudonym) could no longer register their existence, and they in turn felt disconnected from each other. Xavier’s daughter had asked for a chaplain and the spontaneous prayer I offered melted away some of the tension. But when I was done no conversation with me ensued, so to conclude the visit graciously, I gave them one of my business cards and explained that the cellphone number listed is my personal one for them to call as needed.

During my time off the next day, the daughter called and asked if I could come pray again. Guess I supplied a high-quality prayer since she wanted seconds. She declared, “There’s only my husband and me this time with Xavier, so it’s more peaceful now and we can concentrate better.” After I told her I was not in the facility that day, I broached the idea of imparting a prayer over the phone. I worried a little that she would think that was a pale substitute, but the power of the word was to prevail. “I’ll put on my loudspeaker and we’ll listen,” she enthused. Thank goodness she requested Psalm 23, because that was about the only Psalm I had in instant reach. After I recited it, she hesitantly asked about sharing a prayer of her own, which of course I urged her to do as I listened. Her prayer was about feeling God’s strength and praying for Xavier’s peaceful passing. I then intuited that I should follow that by softly singing the spiritual, “This Little Light of Mine.”

The couple murmured their appreciation, and the most moving call of the month was at an end.

Double Exposure

This time it felt like the lowering of the coffin was taking place in a slow-motion film. When it finally bottomed, the descent seemed deeper than usual too. I have officiated at perhaps over one hundred funerals, so you would think I would know the norms. But this one was for my own father. Intellectually I knew the steepness must have been the same. And others present assured me the coffin was going down at the typical speed.  As the funeral went on I was in two places at once: as death professional and as mourner. Would this make my mourning easier or more complex, or both?  A few weeks ago, my husband Steve and I co-officiated for my 95-year-old father at this simple gathering that barely topped a minyan (prayer quorum of at least ten adults). I chose to chant the Prayer of Mercy, which came up in the service so soon I whispered to Steve, “I do this already?” It felt like we had skipped part of the service. Well good I thought. My professional role was not crowding out all the effects of grieving: an agonizingly slow lowering, a harrowing depth, and distorted time. As I chanted, I felt like I was fulfilling a once-in-a-lifetime sacred task . How many mourners have the opportunity to ritually sing of God’s  “sheltering presence” and “finding refuge in the shadow of the Eternal’s wings” as part of their send-off for a loved one?

During my initial mourning period at home,  mulling over the idea of returning to work soon after was nauseating at first. Being a hospice chaplain is not exactly a good distraction from funerals and grieving. But there is the comfort of colleagues, and we certainly have been more on the same page than colleagues of other professions could have been. Also I do not have to bear the stupid or insensitive remarks I have had to endure elsewhere, such as, “It’ll be easier for you. Old people are so hard to take care of anyway.” Yep. A distant relative  actually said that to me as the body was being shipped across state lines to its final destination. As for taking care of patients and their families, at first I told myself that other  people’s problems were a break from the constant rewind tapes of my own. Maybe I could not concentrate as well as usual, but it sufficed.  After the blur of the first day or so, I then pondered how my thoughts and feelings were running more parallel to those of the people I was serving than ever before. I felt more united with family, thinking, “I’ve just been through what you are going through. I’m with you. I can relate.”  So the upside of going back to work is that I have not had to pretend and put on a happy face. Most of all, I feel more deeply the sacred power of visiting the sick and accompanying the bereaved. I am honoring my father’s legacy by striving to do compassionate acts in the context of a now tighter bond between myself and those I serve.

 

This article was reprinted with slight modifications from the blog “Expired and Inspired” in The Jewish Journal, December 28, 2016. The link is http://www.jewishjournal.com/expiredandinspired/item/double_exposure

Chaplain Kaplan’s Complaint

As a chaplain, I am a servant of two masters: my patients and the government.  On the one hand, I want to give patients all the room they need to talk about whatever they want, and not to talk about anything they do not want or need to bring up. On the other, the government (via the hospice agency) requires my best efforts to get the answers to certain questions in my documentation, such as, “What is your religion? Do you belong to a house of worship?  Tell me about your career or hobbies.” Having these questions at least in the back of my mind as I meet a new patient or family member nags at me. At a minimum, even if I do not ask them,  they might be influencing our interaction with each other. At worst, they may be a hindrance rather than a help to anyone but the government.

When people ask me to succinctly define what chaplains do, I say something along the lines of, “We provide a sacred and safe space for clients of any faith background, free of our own agendas, to express their emotions and gain a better understanding of whatever they are facing at the moment.”

You might say despite the fact that these questions force me to have an agenda,  the questions are good ones for finding out what the patient needs and for priming the pump for them to begin talking. But I think more often than not, people find such questions, and questions in general, as intrusive, especially upon a first meeting. I remember when I was a chaplain intern I read an article that suggested that chaplains ask no questions at all during the whole encounter. That might be an extreme, but aiming towards that through open-ended comments and reactions  is a good corrective.

Then there is the issue of trust. Even the government acknowledges the importance of that at least. They require that I conclude my documentation of  my first contact with each new patient, (for every single patient, mind!) with the words, “A trusting relationship is being established,” whether that really happened or not. Building trust takes time even in the speeded-up world of hospice where even a few minutes later can count as “taking your time.”

I am reminded of my talk with Vanessa (pseudonym) over the phone a week ago, when I asked if she wanted me to contact a church on behalf of her loved one. She said, “no, there’s no church.” I felt awkward, and switched to some small talk for a moment. But then several minutes into the conversation, Vanessa brought up that they did belong to a church, and that she would appreciate it if I contacted them. I found that very interesting that at first she was guarded about revealing that information and was uncomfortable entrusting me with it. But after  she got a better sense of my intentions, she felt she was in a safe space to share it. Also she was a member of a minority, which I think adds to the negative impact of having to answer questions. Question-askers have power. The ones answering are vulnerable and struggling to protect themselves.

In an ideal world, my initial question during a visit to my patients  would always be, “How can I best be of service to you at this moment?” O Government, please document  and process my complaint!

The Rosary And The Rabbi

It was not a promising start. I had left a voicemail in Spanish with a new patient on hospice and her family. The patient’s daughter sent me a text message in Spanish saying I could visit whenever I wished. I called back, and after I said in my obviously flawed Spanish who I was and that I could come now, she said, “I don’t understand English.” Yikes. Was my Spanish all that bad?

But when I replied that I was speaking in Spanish to her, she giggled and the conversation at last had a future, however fragile it might be. So I considered it a victorious leap past the communication barrier when she agreed that I could come over right away.

The patient, who I will call Margarita, was seated on the couch, and her daughter Gabriela sat next to her as she put my Spanish comprehension to the test with a complex story of woe. A couple of other family members were present as well. I then turned to her mother, who had not said anything or even looked at me much during this lament. Because Gabriela mentioned that Margarita went to Spanish Mass at a church around the corner, I asked her mother if she would like a prayer. It just so happens I come prepared with prayers written in Spanish for such visits, including a prayer for caregivers (which caregivers sometimes scan into their phones because they like it so much), and the prayer for the Rosary. Margarita found it worthwhile to tune in to me and take the energy to communicate since I brought out the magic word Rosary as one of the prayers I had on hand. At my request, the family found a set of white rosary beads for her to hold.

I felt comfortable enough saying the words themselves of this prayer in these circumstances, but as a rabbi I could not make the sign of the Cross or say “amen,” so I felt I first had to let on that  I was not Catholic, but not only that, I was–were they ready for this?– Jewish. This only added further spice to the spectacle of a gringa like me with fractured Spanish reciting a prayer of utmost sanctity alien to her own beliefs. But they were alright with this, grateful for a spiritual presence that could cut through their linguistic isolation at this time of acute need. As I started to say the words, “En el nombre del Padre, del Hijo, y del Espiritu Santo…” I saw that Margarita could say much of the Rosary by herself by heart. I only had to resume here and there to prompt her along. She teared up at the emotion of expressing this prayer, and I saw the others brushing off their own tears. And as I was engaged with this task, I thought about how odd and how glorious it was that we could transcend language and religion and nationality and race to provide this salvation of release and of God’s comforting closeness.

No Reservations Required

alzheimers-daughter

 

Author Jean Lee faced the bizarre coincidence of having both her parents diagnosed with Alzheimer’s on the very same day. She wrote about this in her book, Alzheimer’s Daughter. Her parents had married on a five-day furlough during WWII and remained passionate about their relationship until their last breaths 60 years later. Jean says, “The blessing of their dual diagnosis was that they faded away together.” In the following excerpt from her book, where she, her sister Annette and her dad face the ultimate loss of her mother, we find out how Jean could call this a blessing:

 

“Around dinnertime, the Hospice doctor spoke with us explaining that a blood infection had started in Mom’s foot. It was something simple that anyone would be able to fight off with a normally functioning immune system but since Mom had stopped eating and drinking, she had no body reserves with which to battle this infection. It would end her life. They acknowledged Mom was having difficulty letting go. Hospice advised us to leave Mom alone during the night so she could come to terms with her own passing, promising to call us at any turning point.

We brought Dad to visit one last time that evening. He whispered sweet things and kissed Mom on the cheek. However, seeing her waxy-faced without her smile, and unconscious without recognition of him­­––he was confused.

As we walked with him back to his room, he asked, ‘Is that my mother?’

We replied, ‘No, Dad, that’s Ibby. The angels are taking her to heaven.’

My sister Annette and I sat on either side of her bed. Her head was turned toward the window, even though it was still dark. As gray dawn came into the sky, her eyes were open just a slit. The Lodge was waking up. Aides came to say their goodbyes and tell her they loved her.

A favorite aide brought Dad to Mom. He stood by the bed, held and stroked Mom’s hand. We knew he wanted to be closer––one last time. We lowered the rails. He leaned his body into hers and kissed her dry lips, whispering, ‘Ibby, I love you.’

Nearly seven decades before, Edwin Church had kissed Elizabeth Naegle at the end of a roller coaster ride in the dark tunnel of love––he now gave Ibby her last kiss. Caressing her cheek, then straightening to stand––shaking and bewildered, Dad looked at us. Annette and I hugged him. The aide approached, putting her arm around his waist to steady him and asked, “Ed, do you want to go back to your room?” He nodded.

Annette and I stayed, leaned over her bed on either side, holding her hands and holding hands with each other, completing a circle. We told her what a wonderful mother she’d been to us. We told her she’d been an amazing grandmother to our children. We told her she’d made us the women we were today. We told her she was beautiful and smelled so sweet. Lastly, we said, “We’ll take care of Dad until you can be together again in heaven.”

With every exhale she labored, as if more and more of her soul was expelled with each respiration. The circle from birth to death was now completing itself.

Annette and I stayed in the sanctuary-like quiet of the room, hearing only our own breathing, stroking her skin, knowing Mom was gone but not wanting our time with her to end.

What was left of Mom was simply her earthly shell. I had seen her birth her soul to heaven.

I returned to the locked unit to get her glasses and dentures. As I walked through those locked metal security doors knowing I had to tell my dad that Mom was gone, I did so with my back erect and a large stride, having great peace, telling myself my mother was now free and restored. She’d never have to live behind locked doors again.

When I entered Mom and Dad’s room, he struggled to stand. I hugged him, smiled and said, ‘Dad, Mom has gone to heaven.’

With a mystical expression on his face, he replied, ‘Really? I just saw her. She came to tell me she’d wait for me there.’”

 

Jean Lee lives with her husband in small-town Ohio, twenty minutes from anything. Although she worked full time while her parents were ill, she is now retired after twenty-two years of teaching elementary school. Her children are married with children of their own. Five grandchildren are her greatest blessings.

Here is the link to Alzheimer’s Daughter

You may contact Jean by email:

jean@alzheimersdaughter.com

Alzheimer’s Daughter blog:

http://jeanllee.blogspot.com

Alzheimer’s Daughter Facebook page:

https://www.facebook.com/AlzheimersDaughter

Twitter:

https://twitter.com/JeanLee18

 

 

 

 

 

Made Sweeter By The Bitter

I never could understand why someone would sweeten their tea or coffee if they were drinking it with dessert. It seems so redundant! Contrasting the bitterness of the beverage with the sweetness of the dessert, and vice versa, is for me part of the pleasure. Nor are the two sensations all that separate. As I sip some tea after a bite of the brownie or other indulgence, the sweetness mixes into the flavor of the tea, and as I take my next bite, the tea in turn makes the treat less cloying.

My work with patients is like that sometimes. Today I saw an aunt untangling and combing her niece’s hair. Then I visited with a learned lady who told me her memories of living in Paris. “I got to see Edith Piaf, in a black dress, up on the stage all by herself. I was absolutely mesmerized.” And I in turn was entranced to hear of someone who had seen The Little Sparrow in person. Later in the day, I visited someone who was watching the news from her bed, all tucked in and motionless except for her face, making cynical commentary about  the FBI and their role in connection with the suspect who was arrested for making bombs found in Elizabeth, Seaside Park, and Manhattan.

I had  all these encounters with people doing ordinary things: relating memories, combing hair, and acting as experts about the latest news, but all against the bitter backdrop that death could very well be around the corner. Combing hair is so ordinary, but becomes so poignant in the context of hospice because I know not many combings may be left for the niece. Was the aunt thinking about the tragedy of her niece preceding her in death? Or was she purely engrossed in the moment, pulling out “all these darn snags”?

Death’s proximity gives a bracing quality to the ordinary, and being engaged in the ordinary postpones the bitterness of contemplating death .