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.

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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

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 .

Standing Astonished in the Swirl of Existence

Here’s a paradox, and one that accounts for why any agreeable person would take on such work as preparing a body for burial, or in my case, serving as a hospice chaplain: being present to the dying the dead and the bereaved  has intensified my sense of being alive. Just as a malevolent character in a novel can heighten the goodness of the hero, being near the dying or the dead can serve as a foil to life. Sometimes as I step outdoors after visiting a hospice patient, everything I encounter seems more firmly anchored in the here and now. Birdsong and the patter of rain make of me a rapt audience. A swaying traffic light beams out with more redness; a wind kicking up and vacillating between cool and cold bars my way from any warmer crosswinds. How can all this be happening around me while someone is about to cut loose from the moorings of her life?  I stand astonished in the swirl of existence.

Where does this intensity come from?  The closer I am to reading the end of a piece of fiction, the more weight the sentences bear. Each succeeding word seems to take on a deeper significance. Likewise, as I am talking with someone who is nearing the end, whatever they are saying is more poignant given that backdrop. I think that is why so much is made of hearing a person’s “last words.” We assume they will be loaded with wisdom, or that they will enlighten us regarding something we had never understood about that person or about ourselves.

Those of us who care for the dead and the bereaved, get a continuous sneak preview of our own final crossing over the inscrutable edge between life and death. As with any rehearsal, we reap benefits that could never accrue if we were to simply improvise when the time came.

_____

This is a reprint of my guest post in the blog, Expired and Inspired, in the Los Angeles Jewish Journal, November 25, 2015. The precise link is: http://www.jewishjournal.com/expiredandinspired/item/astonished_in_the_swirl_of_existence

 

The 99.5 Percent Solution

A short cartoon, just one frame of Charlie Brown and Snoopy, has provoked an awful lot of thought on my part. Snoopy is taking it easy as usual on top of the doghouse and Charlie comes round to vent to his buddy and perhaps imbibe some wisdom. He has some news for his dog: “Someday we’re all gonna die.” Snoopy retorts, “But not on all the other days!”

I told this joke last Wednesday in an unlikely place for a not only Reform but female rabbi: A Chabad Center. At this very Orthodox venue, where the male host would not shake my hands in case I was “unclean” from a feminine characteristic (never mind my postmenopausal age), I was invited to be on a panel alongside an Orthodox rabbi to discuss, “how to make our lives better now.” No sweat, I could handle that question. I was less sure about the venue. I Tweeted, “What was a female Reform rabbi doing in a place like a Chabad Center in Bedford Hills NY? To discuss our mortality but of course.”

The Charlie Brown joke got surprised laughter from the crowd of Boomers and Generation Xers. Whew, I would be alright. But really, the cartoon captured in one sentence one of my main observations that night, which is that contemplating death can tune us in so much more to life, and to what we want to continue and discontinue for our remaining allocation of days. Snoopy the sage also intimates that we should appreciate and savor all those other days that are left.

Savoring life by staring at death may be a commonplace. But how about this? I told the group that sometimes my work in hospice intensifies some of those days that I get to live. On such an occasion, objects seem more present, more “there.” Sounds are richer, reflections off of water brighter, overheard talk more poignant, smells more pungent. I stand in the inscrutable swirl of existence.

During the question and answer period, many questions hinted at fear of death. They asked if people tend to accept it near the end, or whether everything falls into place for them at that point. I sensed the yearning for ultimate answers, which of course no honest human can provide. I gave the consolation prize of explaining how chaplains at least strive to clear away inhibiting agendas and provide a safe sacred space with open-ended questions. This and abundant time to listen lets persons articulate their thoughts without censoring them for family and friends. This way they can then clarify to themselves what their life story has been about.

But you know? Maybe humans don’t have the answers, but Snoopy makes a good point: Around 99.5% of the time that we are alive we are not going to die. Why worry about that less than 1% exception?

A Garment You MIGHT Wish to Be Caught Dead In

Guest blogger Joanna Shears caught my attention because she writes about death in an even jauntier tone than I. In her Twitter profile @winding_blog, she styles herself as a “promoter of death positivity,” and in her blog she largely focuses on creative funeral planning. This September 26, 2014 post of hers is about designer shrouds and how we ourselves can be the designers!

The Winding Sheet

As I’m always banging on about the importance of preparing for your own funeral in advance I thought it was time for me to shut up, put my money where my mouth is and get on with it. Having thought long and hard about what kind of disposal and ceremony I want I have decided on an eco woodland burial (hopefully in the same woodland as my nan). I’m super passionate about funerals that give something back to the earth instead of taking from it. I don’t want to be buried in a big wooden lead-lined coffin and if anyone even thinks about embalming me I’m coming back to haunt you!

With this in mind I have decided to forego a coffin completely and be laid to rest in a shroud (aka winding sheet). These days shrouds can come in all different designs and shapes and materials but basically a…

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