Stop me if you’ve heard this one before…

(Image from DailyCaring)

I have a background in neuroscience and so the volunteer coordinator for my local hospice often assigns me to patients with cognitive issues. I guess having an understanding (at least as deep as science itself can offer an understanding) of dementia and mental illness does help me comprehend a bit of why communication can be difficult for these patients. But, I honestly don’t think it helps me be a better caregiver to them.

No, what helps me, was once when accompanying my mom and grandmother to a doctor’s appointment when I was still a child reading one of the “health info” posters:

Speak precisely
Ask direct questions
Be patient

I can’t even remember if it was related to speaking to people with dementia or not, it’s certainly good advice for communicating with people who do but it’s just as good advice for communicating with people who don’t.

I think most human beings feel a fundamental need to be understood by other human beings on an emotional level. When I visit with patients who are cognitively impaired I find that if I give them room they have lots to say. I’ll admit that sometimes it’s hard to figure out what it is they want me to understand, but I think it’s important to recognize that what’s being said is crucial for me to listen to- everyone deserves to be heard, even if they can’t be literally understood, and often it is possible to discover the meaning. Learning to listen on an emotional level is key when communicating with patients who have cognitive impairments.

For example, a few weeks ago a woman was adamant repeating: “my father has owned this land for 900 years!” I finally pieced together that she was upset about either her new hall-mate or the new patio or both- change is never easy but when you rely on routine it’s even harder. Now whenever I visit I make sure to mention her no-longer-new hall-mate,  and comment about how nice the new patio is. My hope isn’t to help her remember these changes but rather to acknowledge them as new things in her life.

I recently was asked to spend some time with a gentleman who has relatively mild dementia- he knows where he is, who he is, who his loved ones and visitors are, and even that he is on hospice. “Be careful,” a LNA warned me as I got ready to visit him the first time, “he’ll tell you the same story over and over and over again if you let him.”

Why wouldn’t I let him?

In the weeks I’ve spent with him I’ve noticed the stories he repeats seem to correlate with his moods. As a veteran, it seems when he is telling war stories he is struggling a bit with his imminent death. The stories are never exactly the same, and often he’ll say “I never thought I’d feel like that again.” Or, “So believe me when I tell you I know what it’s like to stare death in the face.” He tells stories about his childhood on days when his family is around. Stories about his time in college always indicate a particularly good mood. Stories about his brother indicate (to me) he’s feeling contemplative.  “Stop me if you’ve heard this one before.” He always says, usually before repeating something for at least the 3rd time. But I don’t stop him. “I might have heard it before,” I say, “but I’d love to hear it again- tell me more about….” and he does. Over time he come to talk less and less about the war and college, and more and more about his childhood and his brother. “You’re doing a lot of thinking today.” I can say. “I bet you love that your daughter is home.” I think in his own way he’s moving past his fear of death and longing for youth, to wanting to express his love for his family.

Another patient recently who died without losing any of her cognitive facilities fretted over her husband, who was suffering from moderate Alzheimer’s Disease. Both were devout Christians. As she began the active dying phase and was asleep for large chunks of the day I spent more time with her husband. I watched his children scold him for not remembering their names and excluded him as they grieved for their mother- “you don’t even know who she is anymore,” they said. I made sure to sit with him. He would tell me, every visit, for however long I sat with him, about heaven. It was all he talked about, heaven and how it was a place where the body was healed and he and his wife would live together forever. He knew who is wife was, he knew she was dying. His stories of heaven were his way of comforting himself- and asking for comfort. He needed to know they would be together in heaven. He needed to know she wouldn’t be suffering. So we talked about what heaven meant for him- a place of peace and love and happiness. I like to think it helped.

As I said before, everyone deserves to be heard. And what I mean is, everyone has something they want you to hear. It’s always worth listening.

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PAIN

Pain

Pain… it’s hard to know where to start and I know even writing this sentence that there will be many more posts I have to write on this topic. Pain is physical. Pain is emotional. Pain is spiritual. Pain is existential. Pain is intimately related to suffering and is an important metric for quality of life.

From a neuroscience perspective pain is a bit of mystery- we certainly don’t understand the causes as well as we want to, and we understand how to treat pain even less.

One of the promises we try to make and keep to those at the end of life is that we can manage their pain. But, this isn’t always true.

I recently found myself caring for two men. Both dying from end-stage cancer of nearly everything. Both in pain. The first man responded well to pain medication and his physical pain was under control. The second man refused pain medication because… well, he’s of that stoic generation. The first man was pleasant, charming, and sweet. He was a dapper dresser, always relaxed, and up for trip outside (weather permitting). The second man was grumpy, depressed, and extremely difficult to get to know. Usually he ordered me to leave before I could even say hello. His body was tense, his facial expression a grimace, and he jiggled his legs. He lay in bed day in, day out. Knowing his prognosis, I could only imagine how much physical pain he was in. How much he was suffering.

Then, things changed.

The second man, for reasons of his own, decided to try taking pain medication. The hospice nurse worked with him to titrate up from a minuscule dose to one where he felt his pain was under control but he wasn’t (as he said) “loopy”. The first man experienced a family tragedy. The second man became cheerful, inquisitive, solicitous. He was full of stories and was always sure to make sure I was coming back the next day so we could talk again. He got up as often as he could, marveled over his garden, and told his wife he loved her so often she got embarrassed. The first man retreated entirely. He stopped eating, he stopped caring about his clothes, he stopped wanting to get out of bed. He was always polite, but never engaging. He stared into space, tears occasionally filling his eyes. His silence was impenetrable. Knowing of his family tragedy, I could only imagine how much emotional pain he was in. How much he was suffering.

I don’t want to give the impression that these two cases contrast as neatly as I’ve presented them. Sometimes physical pain is not treatable, but it was for my patient. Sometimes emotional pain can be “treated” by talking, by presence, with time, but it wasn’t for my other patient.

What makes me smile as I write this is  the other change that occurred. As the second man felt better physically he no longer needed to be touched. He liked a quick kiss from his wife, or to place a peck on her cheek, and he didn’t mind supportive arms as he moved around. But, he was too busy moving for any sort of therapeutic touch to be invited. My interactions with him became almost completely listening based. But, after the tragedy in the life of the first man, who had been very physically reserved, I could hold his hand for hours in silence. It became a habit, with his permission, to stroke his hair and give him a kiss on the brow when I left. He didn’t have much to say to me, but we were physically connected in his space.

I think that what this experience taught me is that this promise to manage pain is overly simplistic. Yes, we will do our best to meet your physical, spiritual, and emotional needs in such a way that they do not cause undue or unnecessary pain. But we will also be with you in the state that you are in. One of the reasons I love Dr. Alan’s Wolfelt’s “Companioning” philosophy is that it takes away the need of the caregiver to “make things better.” By focusing on empathy, as companions we need only come alongside and be with the person as they are- be present physically and open emotionally- following their lead.

The promise to manage pain is not a promise to treat pain, it is a promise to not abandon people to pain even when we can’t treat it.  It is a promise of presence. It is promise that if you must suffer, you will not suffer alone.

 

 

 

 

For those not familiar with Dr. Alan Wolfelt or “Companioning” I highly recommend looking at his website. Taking one of his formal courses is a dream of mine.

This explanation of how he came to the term is from his ADEC Keynote Speech in 2005

“Many people asked me about the title of my talk for this conference. Everyone was curious how I was going to distinguish “companioning” from “treating.” The word “treat” comes from the Latin root work “tractare” which means “to drag.” If we combine that with “patient” we can really get in trouble. “Patient” means “passive long-term sufferer”, so, if we treat patients, we drag passive long-terms sufferers. (Doesn’t sound very empowering to me.)

On the other hand, the word “companion,” when broken down into its original Latin roots means “messmate”: com for “with” and pan for “bread.” Someone you would share a meal with, a friend, an equal. I have taken liberties with the noun “companion” and made it into the verb “companioning” because it so well captures the type of counseling relationship I support and advocate.”

 

 

Death Cafes

Image from DeathCafe.com

Have you been to a death cafe? It is exactly what it sounds like- a place where people gather to share their thoughts about death and dying, and sometimes there is cake!

Death Cafe was the brain child of Jon Underwood in England who wanted to

‘to increase awareness of death with a view to helping people make the most of their (finite) lives’.
Since 2011 over 34oo Death Cafes have been held around the world!
I have had, as the cliche goes, the honor and the privilege of co-facilitating the Montpelier Death Cafe since I first moved to Montpelier in 2014, just one month after it started! We will celebrate our 3rd anniversary in December and it is amazing to see how the community has evolved in that time. Every month the meeting is attended by regulars and new people and every month the conversation comes straight from the heart.
Most of all every month every person says they leave feeling uplifted.
It is not so strange today that people want to talk about death, but it isn’t yet a common occurrence. The magic of death cafe is that everyone is there because they WANT to talk about death and we all learn and grow from each other’s thoughts- even when they are radically different from our own.
When I can I like to write what I call my “musings” after the meetings- using the most poignant quotes people have shared. If you’re interested in reading them you can check them out on the Montpelier Death Cafe Profile on Deathcafe.com
If you’ve never been to a death cafe I hope these writings will inspire you to go. And, if there isn’t one near you I encourage you to start one. The instructions all there, and trust me, you are not alone in wanting a safe (and fun!) place to talk about death!

How did I get here?

Image via AbsurdWordPreferred

As part of Dying to Know Day (#D2Kday) yesterday I hung flyers for my conference Ending Well: Practical Conversation About Preparing For The End Of Life August 19-21st around my town of Montpelier, VT. I really wasn’t sure what to expect hanging flyers for a death related event but I was pleasantly surprised by how willing, and how curious, most of the people were.

I certainly wasn’t expecting the most common question to be “how did you choose to be an end-of-life specialist?”

I think most people can’t imagine waking up one day and deciding to dedicate their life to changing the way people plan, prepare, and experience their own death.

I certainly didn’t. But that’s pretty much what happened.

I used to be a neuroscience consultant for the office of ethics at a major hospital. I have an MS in neuroscience, and part of my undergraduate major was applied ethics. It was a great position but I wasn’t quite happy. I don’t even remember how the conversation started, but one day my friend Krystina Friedlander, who is a birth doula at Baraka Birth, looked at me and said “you know, you should be a death midwife.”

And here I am.

Of course it wasn’t that simple. To start with I’d never heard of a death midwife. And there wasn’t a Wikipedia page for it (that just went up in March of this year) but there were websites for women, and a few men, in the US and in Canada who were offering trainings. As I read about what their work encompassed, I just knew… I should be a death midwife.

The journey from that realization to becoming an End-of-Life Specialist began over two years ago when I started learning about death midwifery, from there I became a hospice volunteer, a home funeral guide, an advance care planner, a patient advocate, a birth and bereavement doula, a community educator, and a memoir consultant. It is a journey that evolves with every person I work with and almost every person I talk to and someday will include clinical pastoral education, formal companioning training, reiki and things I know I haven’t even thought of yet. It is a journey that I wrote about in one of my very first blog posts: End-of-Life Specialist but in that post I did leave out the beginning. And it seems the beginning is what people want to know about.

Perhaps it is because end of life work involves tremendous vulnerability- imagining or experiencing the end of your life is incredibly emotional. People want to trust the person guiding them through it.

Perhaps it is because the person asking has had an experience with a loved one dying and are inspired by that experience to find their own path to death-related work and want to know where to begin.

Perhaps because people think it must take some extraordinary, or brave, or stoic to commit to the path I did.

Whatever the reason, I am glad to be asked. Because I hope that my story does convey my passion for being of service in this way, and the dedication I show the people I work with. Because I hope many more people do step on this path. And most of all, because I am an ordinary person following her heart and anyone with heart can do this work.

I’m here.

Maybe you’ll join me.

My Own Goodbye

(original photo here)

On Friday we sat together in his room. “Gunsmoke” blasted from his roommate’s TV. He was impeccably dressed. He patted my hand. Sometimes we chatted. Mostly we let the sounds of the wild wild west fill in the spaces around the silence we sat in.

He told me to be good this weekend (he always told me to be good when I left) and he told me he was looking forward to my visit on Tuesday.

Tuesday is tomorrow and Sunday he died.

Despite the fact that he’d barely eaten in weeks and was too weak to sit up in a chair anymore. Despite the fact that I’d watched as his wife’s death last year ate away at his desire to keep living. Despite the fact that he could barely stay awake for 5 minutes at a time. Friday was a regular visit. He wasn’t actively dying. I never thought I wouldn’t see him Tuesday.

But Tuesday is tomorrow and today he is dead. I was good this weekend, but I won’t see him ever again.

Often the people I work with die when I am not there. It is rare that I am caught unawares like this. But even when I am present for the death, I have developed my own goodbye ritual. It is a way for me to release the energy that is now gone from my days and from this earth. It is a way for me to recognize the inevitable outcome of my job is death. It is a way for me to celebrate my time with someone.

I light a candle.

I sit quietly with my candle and my thoughts.

I start by remembering the first time I met the person.

I end by remembering our last visit.

I say thank you.

I blow the candle out.

Once the candle goes out I breathe deeply. I am always grateful and amazed that such a simple muscle movement is what keeps me alive. Grateful and amazed that I can breathe when someone I knew, and loved, no longer does.
Then last step of my goodbye begins. I let my diaphragm contract, I let my lungs fill with air, and as I exhale I start to speak. I tell myself the story of my time with that person. It is a story I will use my breath to tell over and over.Because saying goodbye never means forgetting. Because their story is a part of me. Because I have the breath to tell it.

Because saying goodbye, my way of saying goodbye, will go on until my last breath. Even when I am done telling the story, I will never forget how my time with them has shaped me. And as long as I am breathing they will be a part of me.

Really, my ritual, my own goodbye? It’s not a goodbye at all. It’s saying hello to a new part of myself. And it’s always an honor to meet it.

(In memory of C. I miss you.)

 


I am trying to write a blog post a day as I lead up to my conference “Ending Well: Practical Conversations About Preparing For The End Of Life” August 19-21st in Montpelier, VT
Conference details in this post

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Why Rosemary

I chose rosemary as the symbol for my business Ending Well and had a good friend design this gorgeous logo:

EndingWellLogoAllLayers

But why rosemary?

 

Rosemary is an herb that has a long association with remembrance (just google it if you don’t believe me) and I won’t try and top the great bard himself who has Ophelia say in Hamlet “There’s rosemary, that’s for remembrance. Pray you, love, remember!”

Throughout history rosemary has been woven into funeral biers, wedding wreaths, and even into the hair of young Greek scholars hoping to improve their memory on exams. It is thought that its intoxicating smell stimulates memory- reminding lovers to be true to their vows, helping solve pesky math problems, and a way for both the dying and the mourning to be assured of never being forgotten or forgetting.

Because rosemary is an evergreen it has also been associated with fidelity, something I find particularly poignant in funeral traditions- an herb of constancy to celebrate the great change from life to death. A promise to not forget. A promise of everlasting love.

Rosemary also grows in humble places and is said to be a reminder of the equality of our fate. I found this poem by George Sewell an English Physician while looking up some facts for this post

‘The Dying Man in His Garden’

Thy narrow pride, thy fancied green
(For vanity’s in little seen)
All must be left when death appears,
In spite of wishes, groans, and tears;
Nor one of all thy plants that grow
But Rosemary will with thee go.

Sewell lived from 1687-1762, a time when it was customary to throw sprigs of rosemary into the grave.

But, as you get to know me through these post, you’ll come to find that I have a slightly dark sense of humor, and so ultimately, I must confess I chose rosemary for two additional qualities that I learned from Lee Webster- President of the National Home Funeral AllianceNational Home Funeral Alliance and founder of New Hampshire Funeral Resources, Education & Advocacy. Two qualities that make a lot of sense when you consider the sanitary conditions of funerals in previous centuries!

There is the obvious one: rosemary has a strong, pleasant scent. In fact, some of the earliest incenses were made with rosemary. Using rosemary to decorate a corpse most likely originally had something to do with masking the smell of early putrefaction and decay.

And the less obvious one: rosemary is a natural antiseptic. Using rosemary oil to bathe corpses might have evolved as a way to protect the people who were responsible for laying out the dead.

These five reasons- three poetical and two practical are the perfect combination in a logo for a business that deals with death. After all, that line between the metaphysical and the real is the line I must walk as I do this work- never forgetting that death is a sacred experience, while at the same time providing options and guidance for living with dying.

It is important to me that we recognize the symbolic importance and, yes, poetic beauty that often occurs when someone begins their journey through the end of life and into death. But it is equally important to me that we recognize that we are still human, with human wants, needs, fears, and dreams. Whether I am helping your plan, prepare, or experience your own good death I promise to do my best to meet your spiritual, emotional, AND practical needs. That, to me,  is the essence of being an End-of-Life Specialist.

I hope to grow enough rosemary to give sprigs to everyone who attends my upcoming conference, Ending Well: Practical Conversations About Preparing For The End Of Life August 19-21st in Montpelier, VT (which you can read more about here). May it help you remember what you learn, commend you to the services I offer, remind you of your mortality, refresh your nose in the summer heat, and keep your hands clean…. and after all that you can take it home and use it as a subtle spice in a delicious meal.

 

—Written in memory of my irreverent high school English teacher, Mr. DePeter, who introduced me to the black humor of the modern Irish playwrights and didn’t force me to finish reading Hamlet, and died in 2009 (I miss you) —

Thanks to these blogs for refreshing my memory on Rosemary:

http://mrssymbols.blogspot.com/2015/04/rosemary-for-remembrance.html

http://www.adlunamlabs.com/History_of_Rosemary.html

Rosemary for Remembrance

As always, I appreciate your comments- especially if you have something you would like to see me address in a blog post, or just have something nice to say.
If you’re interested in my services email me: michelle@ending-well.com or visit my website http://www.ending-well.com

 

 

I was on TV but you deserve the credit

(Image from  Real Thanks by Courtney Helgoe)
This morning I got a brief chance to talk about what I do as an end-of-life specialist on my local morning news show WCAX-TV. Watch my 6 minutes of fame here . It was SO exciting to be able to talk about serving my community to such a broad audience. However, my time was short and other than a brief mention of all the wonderful work being done that inspires me I did not have a chance to thank the women who have personally shaped my journey and without whom I would never have been on TV today, launching my own business, and preparing to host a conference Practical Conversations About Preparing For The End Of Life here in my hometown of  my Montpelier, VT August 19-21st.
There are many people who inspire me with their work, their words, their ability to be hold space and support me on this journey despite the fact that they are not always comfortable being so close to death&dying, and even sharing this path with me. I hope they know how grateful I am for them.
This post is not for them though they are in my heart as I write.
This post is for the people who have mentored me, taught me, shaped me, and in some cases become my friends. While I know I can never adequately express my gratitude to you, I can at least acknowledge my appreciation for your wisdom.
 To Jerrigrace Lyons, founder of Final Passages Thank you for coming East in 2014 and introducing me to home funerals.
To Lee Webster, president of The National Home Funeral Alliance and founder of New Hampshire Funeral Resources, Education & Advocacy Thank you for your always practical and often poignant advice about how to actually BE a Home Funeral Guide.
Thank you for teaching how to hold space and about the philosophy of Companioning
To Heidi Faith, founder of Stillbirthday Thank you for instilling in me the values of going slow, getting low, and providing options not answers.
To Suzanne O’Brien of Doulagivers and Patty Burgess of Doing Death Differently
two women who have believed in me from the start and taught me so much about how to support people at the end of life and how to have faith in myself, thank you.
To Jean Semprebon, Volunteer Coordinator at Central Vermont Home, Health, and Hospice Thank you for helping me learn to listen and giving me the courage to trust myself to meet people where they are and as who they are.
To the people of the Montpelier Death Cafe Thank you for opening my heart and my mind each and every month we meet.
To Donna Belk, founder of Beyond Hospice the program I may never finish because it is truly the white rabbit leading me along the path of discovering a new way of being of service as an End-of-Life Specialist  I will never stop learning.
And to Krystina Friedlander, founder of Baraka Birth who told me I should be a death midwife and was absolutely right.
Thank you is phrase that gets overused. But I use it here in all its glorious simplicity as an expression of gratitude, debt, and joy. Thank you. Thank you. Thank you. Ending Well exists because of you.
Check out these wonderful women and see if their work calls to you the way it did to me. Leave me a comment about my first TV appearance. I hope it is the first of many and I am always looking for ways to grow and improve. And, Thank you, for reading and for your support.