I’m makin myself a costume - I like this approach! Sometimes you have to step outside the box to shake someone out of where they are and help them get to where they need to go. I don’t want healthcare too afraid of law suits, rules and human connection to dare to be different. I want that provider who will put on a crazy costume and try the seemingly insane to reach a human soul - not because they have to, but because they care enough to want to.

I can’t help but think how this movie cried out for the very things that might have helped change Robin William’s story. Now - I’ll be the first to admit - *that* is a large leap to make, missing many of the facts and details that led him to his death, but I still wonder. Every time I see this scene, I am thankful for the courage of a man who made human connection with so many humans - many whom he never met, and I wonder why our healthcare institutions continue to try to train the humanity out of its workers while maintaining the word “care” in the title - as if one can exist if they banish the other.

I don’t want a pill that just makes it all go away, I know those already exist, I know we can manage pain and disease but not prolong life indefinitely. I know that ending suffering is possible in many routes (Though I will still fight that it is an individual right that should not be veiled in secrecy and dishonor). What I want when those last days come for myself - is the unequaled soothing balm of human kindness and connection, the last testaments of human goodness and love displayed to me in all their shining brilliance, all their human flaws, all their well-meaning fumbled and less than perfect humanity as they walk with me that last mile home. Sit on my bed, share with me your stories when I’m scared because knowing I’m not alone - is comforting, listen, because being heard is freeing, hold me, because touch heals what cannot be cured and set me free - because Death will never be the worst thing that can happen to me.

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I find the title unfortunate - I don’t find there to be much truly morbid about it. The truth is - the practice encourages conversations we desperately need, it encourages decluttering which is practical in an age where people want to stay home longer - and clutter becomes Trip hazards and dangers and a lot more to manage in time. Sharing the process with family creates memory and legacy. In the process we learn to let go, an essential skill in learning to adjust to the changes of aging and eventually facing death.

It’s not morbid, it’s smart, it’s practical and it’s a beautiful potential - if we can just stop seeing everything that acknowledges death as reality as morbid.

I was on my hands and knees underneath the counter, digging for a pan to make cornbread until I realized the pan I was searching for in the bowels of my kitchen cabinets, I had brilliantly decided to use to hold beads and rocks several weeks ago, and hence it was sitting on the table in my craft room. I re-routed into the bread pans and there it was, the loaf pan I used to make salmon loaf for Gram one last time. [ 648 more words ]


October 3, 2017 – For IMMEDIATE RELEASE

CONTACT: Amanda Carr, Maine Chapter Director, (207) 318-5993

Twilight Wish Foundation Welcomes New Chapter in Maine

Portland, ME – National nonprofit Twilight Wish Foundation, headquartered in Doylestown, Pennsylvania, is pleased to announce the appointment of Amanda Carr as director of the newly-formed Maine chapter.

In addition to serving as chapter director, Carr has been an R.N. for the past ten years, working in hospitals and emergency rooms across the country. Out of that experience, she realized there was a need to improve the way our society views end-of-life and the choices and experiences that come with it. Subsequently, Carr founded Changing the Face of Dying, which takes a multi-faceted approach through education, planning, advocacy and support for the end-of-life experience for individuals and families.

Carr was inspired to start a chapter of Twilight Wish while caring for her grandmother on hospice. Together, they talked about bringing a hospice wish granting organization to Maine but then Carr discovered Twilight Wish Foundation and realized there was no need to limit it to hospice patients.

“Our seniors spend their lives pouring their magic into future generations. Having a chapter of Twilight Wish here in the state gives us an opportunity to give a little of that magic back and connect people across generations as we make dreams come true,” said Carr. “In a way, it’s a fulfillment of Gram’s (and my) Twilight Wish to make this happen.”

Twilight Wish Foundation is a 501(c)(3) nonprofit that grants wishes to low-income seniors who are over 65 years of age and have an income of less than 200% of poverty level or who are a permanent resident of a nursing facility. The mission of Twilight Wish Foundation is to honor and enrich the lives of seniors through intergenerational Twilight Wish celebrations. Our vision is to make the world a nicer place to age, one wish at a time.

A life-changing encounter with a group of senior citizens at a Pennsylvania diner was the inspiration for Twilight Wish Foundation. In 2003, Twilight Wish founder Cass Forkin noticed a group of elderly women counting out their change to pay for their meal. The women, grateful and touched by this generosity, insisted on knowing who treated them to their meal. Their gratitude for her simple gesture inspired Forkin to found Twilight Wish Foundation, an organization that addresses the unmet needs of the elderly. Since that day in the diner fourteen years ago, Twilight Wish has granted over 2,690 wishes to low-income seniors, thanks to volunteers, corporate and community involvement and donations.

For more information on the Maine chapter of Twilight Wish Foundation, visit the website at www.twilightwish.org or call Amanda Carr at (207) 318-5993.

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Hats off to the Dover-Foxcroft Police Department and to Heather Richards for truly living the spirit of what I talk about in this space so often. Our pets are family, and making the choice to let them go in comfort, love and dignity is so difficult, a true rising to the ultimate call of love which asks us to let go when the time comes.

To Heather and Kali - I hope the days of your journey are filled with the most beautiful memories, I have watched you two give each other such life through the years - I know that does not end anytime soon even when the time comes and Kali goes home.

Heather thank you - for sharing your story - letting go with love is an amazing thing, and I share what you're doing so that others might find their way to a similar beautiful path inspired by the courage and heart you and Kali have shown. Thank you for all you are and for sharing it with the world.

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"It can be empowering when people lean into their own mortality," she says. "To die with your wishes fulfilled colours the experience for those left behind."

We will not be silenced, we will be heard...

It is not our job to accept abuse - not from employers who will not fix the situation or clients and patients stressed by the system or disease. We are your advocates and healers, we deserve to be advocated for and protected.


Changing The Face of Dying as a company, myself as a nurse, stand in solidarity with every healthcare professional who has ever been afraid for their safety or afraid for their job as they have stood up for themselves while caring for their patients. This is unacceptable, and until the climate of healthcare acknowledges the value of its front line workers and makes appropriate efforts to treat them accordingly we will keep calling out for change.

These are ideas you NEED to understand - understanding these things has the potential to change everything in the end.


I have watched you....
Long years I have watched,
Sometimes from close by,
Most often oceans away....
But always since that first day I have seen you...
Your light has nearly gone out
More times than I can count,
I have learned to live and breathe my grief,
Knowing it is nothing
To the monsters you have known.
And I have watched.
And mourned, and loved.
I was gifted your return.
The price you paid for your long wandering,
Of grief drowning soul,
Is now your body.
And now I watch you fight...
A mighty battle inside yourself
No longer certain you want to die,
Not sure how to live,
And even if you knew how,
Will you?
It seems too cruel, unfair...
I hold you in sacred space, aching inside.
In your likely too brief return,
I was allowed to show you my love,
You freely gave yours back,
You allowed me to show you the legacy,
The one you could never see before.
Your fear in those dark nights gone by
Was Vanquished.
Now, you'll decide your path
And I'll fill that vow when it's time,
But I love you too much to bind you here,
And I cannot bear the sweet taste
I finally know once more
To turn bitter again.
So I'll hold you, and tell you it'll be alright
No matter what you choose.
And before you close your eyes one last time,
I'll come home.

Amanda L. Carr 2017

I kinda love Boo Boo at the moment. If you consider yourself a healthcare consumer then understand it is your right to shop around for the hospice that serves you best. Understand it's your benefit. Knowing what you're entitled to and what agency offers you the most in your particular situation is being a good consumer. I highly suggest looking into this long before you need the benefit - at the time of need for yourself or someone you love it's usually a first referral situation and the window to shop around doesn't seem so possible. (Though hopefully someday we will change this too)

In the last lines of the video it's said, quite poignantly, that in the US we've made accusations that these conversations are cold and heartless, that they amount to death panels, but they're not. Open, real, and yes, difficult conversation is our only way to help people to make their choices within the framework of their reality so they can live out better end of life and potentially die better deaths on their own terms.

We understand that most won't "want" to face these conversations - it does not make the content or intent cold and heartless or conversations inappropriate to have - it makes it that much more Important, a sign of true care, to be willing to do the hardest things for someone in a time of need. It is not about giving up - it is about understanding - there is choice, and those who engage In making those informed choices, whose families and medical practitioners are willing to facilitate, encourage and engage in these difficult conversations and choices, are the ones Dying better deaths in our society.

These talks are how we get to the deaths we say we want, but far less often achieve in a society where we deny death is an option where it clearly isn't - it's the only conclusion; the option is about how one will die, using your voice and declaring your terms or denying to the truly bitter end where death still happens regardless of our unwillingness to accept it comes for us all.

When Atul Guwande started to open eyes with his book Being Mortal, a few years ago, it really did flame a thought revolution in eldercare as well as end of life planning. We had made good progress but there's so much further to go!

What makes your life meaningful? What will help maintain that meaning as you move forward? What are the most important things to you? What gives you purpose? These are the things people LIVE for - lose them or have them taken away and quality tends to go with them. This is one of Guwande's points in his discussion of bringing things like animals into nursing homes - many of these patients are lost and without purpose - giving them something to "take care of" that has meaning can often draw them back and improve quality of life or even seem to "restore" life where it seemed to be slipping away.

I challenge you - what gives your life purpose - how can you communicate what is most important to those you love so they can help maintain those aspects of you as you age? How can you hold on to purpose? Is it pets? Volunteer work? Art? Family and grandchildren? What is your quality that makes you want to live and do those that will potentially speak for and care for you know how to help you maintain that purpose, quality and sense of self-worth to the very end?

I love learning new bits of where old traditions come from 🙂