The first time I remember hearing the word caregiver was from my dad. My mother had suffered a tragic accident and had spent months in hospitals. She was finally ready to come home.  He committed to be her caregiver, as if you “watch the things you gave your life to, broken, and stoop and build ‘em up with worn out tools...” ~Rudyard Kipling, If.  My dad had a strong back, a missionary heart, and ears that no longer worked very well.  He loved my mother, and he loved our family.  His “practice of gratitude is not about dismissing sadness, anger, fear, or confusion. Rather, it offers us the opportunity to see that we often experience multiple feelings at once; to welcome joy into the same places where we hold grief; to turn our attention to what is quietly growing and breathing day by day, which, to our possible surprise, includes ourselves." ~ Kristin Lin, Editor, The On Being Project.  

“There are only four kinds of people in this world.  Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” ~Rosalynn Carter, former First Lady, USA; Founder of the Rosalynn Carter Institute for Caregiving.

These quarantined days may tease us about what life might look like for us as caregivers. Time loses its authority. Days slip by and into each other as if all we have is yesterday, today and tomorrow. There is a desperation that there is always something more you think you need, more to do, that what you do is never enough. Exhaustion which comes from always listening for the call for help. “Courage is not simply one of the virtues but the form of every virtue at the testing point.”~ C.S. Lewis. Feeling inadequate for not being able to make a clean, happy ending. Grateful for one more day. Relief at having made it to the time for sleep where the paralyzed kneel to tend their gardens again and swing themselves back into the saddle to run with the hunt.  “We.needto.think.about.eachother.and.begrateful.and.to.sendlove.”~Alice-May Purkiss, @lifedeathwhat.  

Jessica Zitter, MD, MPH, is one of the architects of our End of Life movement. She believes that “Caregiving is the most important health care crisis no one is talking about.”  Her convictions and experiences are coming in a soon to be released movie, "Caregiver, A Love Story". Please enjoy the trailer here below. 

Save your gloves, you are going to need them. “If you extend acts of kindness, you bring order to the chaos” ~Karen Kedar, God Whispers.  

Be well. Be kind.  Take good care of you.  ​​

"Caregiver: A Love Story."

To be brave in these times is hard. Existentially hard. I am grieving. I’m feeling loopy, off balance and adrift in a surreal other world where everything seems inside out. Apparently we can’t save one another so we must avoid one another. This can’t be happening. But it is. I’ve got to make sense of this for me, for you, for us. Wearing my Dad’s belt today is helping. He was the bravest person I’ve known.  He loved his life and he saved my mother’s life and cared for her for 23 years. When he died, he giggled his way across. I remember one evening when his dog would not stop barking. A big fat snake had entered his kennel. Dad appeared with his leather to the elbow barbecue gloves and a pitchfork. I got the dog and he went up to the snake, scooped it up and walked to the woods where he heaved it back to where it had come from. I asked him where he learned to do that. He said, “Wall Street.”  I’m inclined to adore my heroes. I have faith and this is hard.

In Resilience, Eric Greitens coaches “Don’t expect a time in your life when you’ll be free from change, free from struggle, free from worry. To be resilient, you must understand  that your objective is not to come to rest, because there is no rest. Your objective is to use what hits you to change your trajectory in a positive direction.”  “People tell you, "Don't worry." That's usually friendly advice – and also unhelpful. It's better to tell people, "Worry productively." If you're going to spend time thinking about bad things that might happen, then use that energy for a purpose. Go ahead and visualize the worst that can happen. But instead of wallowing in your worries, imagine how you'll respond to them. Practice. Mentally rehearse what you'll do. Imagine and envision yourself making it through hardship. Your mind is built to prepare for problems. That's more than OK – it's good. The goal of mental rehearsal isn't to fill your head with happy thoughts about the future, but to prepare yourself to succeed in the real world.”  
“Fear is a core emotion. A life without fear is an unhealthy life.”  “Focus not on wiping out your anxiety, but on directing your anxiety to worthy ends. Focus not on reducing your fear, but on building your courage – because, as you take more and more responsibility for your life, you'll need more and more courage.”  “Recognition of the tragic character of life is part of what spurs art, energy, comedy, courage. Would you love people the same if they could never die?”

Now is THE time for reckoning “all the obnoxious feelings that grief entails” says BJ Miller, MD, of ENDWELL. But I’m hopeful.  I’m grieving. You’re grieving. We’re grieving. That is a welcome new reality for me. I’m not alone. And neither are you. We do have choices. Brené Brown urges “Love is the last thing we need to ration right now...and Expectations are just resentments waiting to happen.”

I am especially concerned about ventilators and how desperately we apparently need them.  “Healthy people think about how they want to die. Sick people think about how they want to live.”  Jessica Zitter, MD, MPH. We need to have conversations with our loved ones about how we live and about how we hope to die.

It’s time to have The Ventilator Conversation. Candidly. Soberly. Joyfully. While we can. It matters not what we choose- pro, con, or not sure.  What is important is that we open ourselves and our loved ones to what what our values are and what we value. We can be productive with our worry and pre plan for the end of our life: our death.  “The goal isn’t a good death but a good life all the way through to the end.” ~Atul Gwande, MD. And this is important: “Listen with the same passion that you have for being heard.” ~Harriet Lerner. 

“Talking about sex will not make you pregnant. Talking about death will not make you die.” Alua Arthur from Going with Grace, practices The Art of Embracing the Unknown starting  with ‘What must I do to be at peace with myself so that I may live presently and die gracefully?”

Do you remember how to eat an elephant?  Little bites. “We can do hard things” Glennon Doyle, one step at a time.  Slowly. Oh, and please fall apart. Learning hurts. I know it makes me feel better to get into it, roll around, and notice how it’s already changing me and who I’m becoming. “It’s not what happens when we die that matters but how we live these lives.” ~Eben Alexander, MD.

I am especially concerned about ventilators and how desperately we apparently need them. Now is the time to have The Ventilator Conversation.

"What The Word Needs Now Is Love" ~Dionne Warwick

 One year not so long ago, we did a lot of traveling following our Denver then English athlete in the final seasons of her lacrosse career. I carried and read many books on death and dying. My companion read a book titled The Making of The Atomic Bomb. I see now that Carl Sagan has read it and recommends it as “a stirring intellectual adventure...indispensable history of events in which our future depends.” The book weighs 2.15 pounds and is 896 pages long. I don’t think anyone ever asked to sit in the unoccupied seat with us.

I still read voraciously on death and dying. I took many notes reading, Advice for Future Corpses (and for Those Who Love Them): A Practical Perspective on Death and Dying. Author Sallie Tisdale recounts, “the comedian Laurie Kilmartin used Twitter to describe her father’s last days. Her comments were often funny and poignant: “Just promised Dad I’d be nice to Mom. Damnit. “ She noted how hard it was to be appropriate, to say the right thing. “Hospice says to reassure the loved one that they can go, that we will be ok. So me sobbing “Dad, don’t fucking leave me, was frowned upon.”

I’ve Seen The End of You: A Neurosurgeon’s Look at Faith, Doubt, and the Things We Think We Know, by W. Lee Warren, MD,  writes “losing a child is the most malignant disease I’ve ever encountered in my own life.“  “The most important surgery I would ever perform would be the stitching together of my faith, my doubt, and the things I thought I knew.”  “Resuscitation is a nasty endeavor. Because the heart has stopped it is very difficult for the Code Team to start IVs and many patients end up with large IV lines in their necks, groins, or both. CPR breaks ribs. Patients lose continence of their bladders and bowels. They vomit. In the end, even when we bring people back, only a small percentage of those patients survive to the end of the hospitalization; research suggests that only 16% of cancer patients who are saved by CPR are alive 30 days later”.  W. Lee Warren, MD is a brain surgeon, inventor, Iraq War veteran “and somehow I’ve been placed in the lives of other bereaved and hurting people, and I have realized in those darkest hours, the knife edge of survival or ultimate loss might be traversable only if one can see, no matter how dim, the light from a torch held by someone a little further down the same path.”  “One of the secrets to surviving the difficulties of life is to be honest with yourself about their effect on you.”

And the book Anxiety: The Missing Stage of Grief, by Claire Bidwell Smith demonstrates that she has “come to understand that one of the significant reasons anxiety manifests after the death of a loved one is from not allowing ourselves to fully examine the story of our loss.”  “I cannot help but look back on all of my experiences of loss, even the most painful moments of it all, with anything but gratitude.  Losing the people I loved most in the world and walking through the fire of grief broke me wide open.  Grief taught me compassion. Anxiety taught me peace and presence.  Loss taught me how to live and love.”

I think it’s the stories that empower us to make sense of it all.

Our first house was located across the street from a cemetery. I walked there often as I struggled to carry the sudden loss of my brother.  This was a grief I made complicated and it fuels me to live more consciously. I was a new and young mother with an infant and two toddlers.  It was a gruesome and tragic accident that simply shocked me and scares me still. It was me who told my mother and father.

I know I began to learn resilience in that cemetery. We visited almost every day. We explored different ways up, in and around.  We learned the life there- the plants, the trees, the sun and moon and stars, the other visitors two-legged and four, the other mourners.  Sometimes we had the cemetery to ourselves and made it our home. Sometimes we were outsiders there as others gathered in their own ceremonies.  It was a quiet place which we made loud with our life: talking, laughing, shrieking.  And crying. We made games playing and we felt safe. We also tripped, fell, bled and then we healed. We got tired there and then went home for naps. We imagined the people the names had been. We witnessed rituals symbolizing honor, love and respect: tokens placed on graves; young trees newly planted; and we learned faith new to us.  Most people had lived long lives in our cemetery. And that made me hopeful for myself and hopeful for my children.

People caring for people is not new, especially when they are dying. End of Life Doulas are inspired by Birth Doulas, a practice which has persisted through time. End of Life Doulas work in hospitals, in hospice and Palliative care and in homes. Choosing how you die is choosing how you live.  

End of Life Doulas provide non-medical support to people choosing to live their death.

End of Life Doulas tend to the emotional, basic physical, psychological and spiritual weather of a dying person and their loved ones.

End of Life Doulas engage with gratitude and suffering in committed community with a dying person and their loved ones.

End of Life Doulas shepherd a dying person and their loved ones to open to the experience of dying as hopeful, natural and positive.

End of Life Doulas are trained to inspire meaning, celebrating, reflecting and witnessing what is important in the life of a dying person.

End of Life Doulas prompt a dying person to process and review their life.

End of Life Doulas acknowledge the legacy of a dying person’s life and history.

End of Life Doulas hold respectful space for a dying person and their loved ones, facilitating rituals and the vigil.

End of life Doulas hope for good mourning in the evening of one’s life.

Réné Pallace, CPCC, volunteers her time as a trained End of Life Doula and is a Candidate for Certification from the International End of Life Doula Association
 (INELDA)

Your mind does not distinguish between reality, what actually happened, and the story you tell it, or the story that you allow it to tell you.

When you use your hand to express your mind by writing free form, diary, poetry, drawing or painting or any other creative connection, your mind must stop its activity. It cannot keep spinning a story or looping a movie about an event while also engaging in your expression. By connecting your mind to your hand, you move the story which spins and spins and makes you so dizzy, out in front of you to read, consider, ponder, question, deconstruct or construct. 

Connecting your mind to your hand allows you to stop the movie that is replaying the loop of the event(s) of your crisis. Do you know that “you put your thoughts down on paper”? Putting your spinning story or movie loop to paper puts your thoughts DOWN on paper. What is true at 2 am can be ludicrous after breakfast.

This is the most time-honored therapy for grief.

Some days let it be enough that you write or make art. Other days you may be inclined to question or make meaning. On the best of days, you will have an epiphany. If you can be kind to yourself, and trust that there is no wrong way to be, you will, in time, see what all this has to do with who you are becoming.

Mindful mindwork for response-able grief.

There are many books which have been created by people writing their story. Here are a few of my favorites:

“A Broken Heart Still Beats,” Anne McCracken & Mary Semel
“Anxiety: The Missing Stage of Grief,” Claire Bidwell Smith
“Before and After Loss,” Lisa M. Shulman, MD
“Broken Open,” Elizabeth Lesser
“It’s OK That You’re Not OK, Megan Devine Option B,” Sheryl Sandburg & Adam
“Resilience: Hard-Won Wisdom for Living a Better Life,” Eric Greitens
“The Long Goodbye,” Meghan O’Rourke 
“This Is How,” Augusten Burroughs

Mindful of my dying, and taking aim, I am inspired by a fable. 

“There is a colony of water bugs living in a pond who get along wonderfully. They all understand each other and work well together. There is only one thing that really puzzles them all. Sooner or later, as bugs get older or become sick, they find a tall reed in the water and climb it. The other bugs do not know why they just climb up and disappear.

One day, the leadership got everyone together to figure this out. They made a pact- promising that whoever climbed a reed next would come back and let everyone know where they had been.
A little time passed and unexpectedly the chief found himself climbing the reed. He was so excited. When he got to wherever he was going, he would come back and tell the others all about it. When he got high up in the water, above the rest of the colony, he suddenly found himself going out onto a leaf and spinning a soft shell around himself. Well, he thought, when I get out of this, I will go and tell them. He rested for a long time and then, for some reason, he found himself removing the soft coating. When he emerged, he struggled still upward and found himself breaking through the top of the water.

What exhilaration! There was a whole new existence up here. He found that he had wings and could float freely above the water- soaring and gliding. With great joy, all his friends that had climbed the reed before him welcomed him! He asked them about this new place and was told that he had died as a bug, but was now a beautiful dragonfly.

All of a sudden, he remembered his promise- to go back to the rest and tell them where he had gone. He looked down and saw the waters surface. Ok, he thought, I must dive down and let them know. The other dragonflies warned him against it, but he had promised. With resolution, he dove- but when he hit the water, he bounced off. He tried again and again, but could not find a way through the surface of the water. Exhausted, he floated on top watching the colony below knowing there was no way he could reach them.

In time, he realized that even if he could go back, they would not recognize him, now that he was a dragonfly. So he did what all the other dragonflies had suggested- begin his new life, knowing that sooner or later all of those below would understand.”

~Author Unknown