I was introduced to hospice care when my husband Ray Whitfield was diagnosed with stage 4 lung cancer in 2005.  Together we came up with the phrase "Gentle Journey' when people would ask us how they could help. We said "Just pray for a gentle journey. We knew we could not stop the cancer, but we could travel the road from diagnosis to death as a "Journey With Love". We were introduced to the spirit of hospice care; quality of life being more important than length of life --- and it all made sense to us. The spirit of hospice is to bring compassion and excellent medical care to terminal patients. A terminal diagnosis is not good news, but for us there was enough time for Ray as the patient and many friends and family members to celebrate his life. I will be sharing stories about how Ray and I traveled the 16 months from first getting the news up until his death. The Spirit of Hospice Blog is a place where I will share my experiences so it may help other walk through the very intense journey from diagnosis to death.

Since I work at Hospice Partners of Southern California and I often speak to groups about the value of hospice as an underutilized resource for patients and caregivers, I was able to share the power of the phrase "Journey With Love" . I had wanted a bracelet to give to Ray's grown children and friends so that they could help us stay focused on the goal: for him to face these difficult times knowing he was surrounded by love and support. I met the CEO of NOVICA on an chance encounter in our building where both our headquarters are, and what started as a 'hello' became a partnership for the artisans of NOVICA to work with HPSC to design three styles of our JOURNEY WITH LOVE bracelets as a fundraising project for our not for profit organization .  100% of the proceeds on all the bracelets goes to support programs that are not funded by Federal or State reimbursement.  Please check out the link and buy the bracelets for yourself and your loved ones facing any difficult challenge. Hospice workers have begun to wear the bracelet as a proud reminder that the work done by volunteers, nurses, home health aides, social workers, music therapists, and doctors are all on a  professional journey where love leads the way.

A JOURNEY WITH LOVE

I was introduced to hospice care when my husband was diagnosed with stage 4 lung cancer in 2005.  The team showed up at just the right moment. The spirit of hospice is to bring compassion and excellent medical care to terminal patients. A terminal diagnosis is not good news, but sometimes there is enough time for the patient and family members to celebrate the life of their loved one. I will be sharing stories about how Ray and I traveled the 16 months from first getting the news up until his death. I will also share information and opinions about hospice care in general so it may help as you walk through your journey. Let's talk about it.

The Five Wishes - A Gift of Love

The Five Wishes - A Gift of Love

                I have the wish to live a long and healthy life that ends in as gentle and calm way as possible.  I'm talking about ending life as I know it in what I and others would call ‘a good death'.  Of course there are things out of our control due to circumstance, fate, and a force greater than us.  But there are things we do have power over and one of those is to provide directions in writing about what we do and do not want our last months, weeks, days and hours to be like when it is our turn to die.

                Through my experience with Ray I know I  do have power in the preparation for my death.  I have the opportunity now to figure out all the details that are likely to make my death rough or gentle so that things do not happen in a random manner, with fights, struggles, guesses at what might be the best for me. By filling out an advanced directive (I chose the 5 Wishes format) I  put words down so the guessing will be reduced to the minimum.

Since Ray’s near perfect end-of-life experience I talk more willingly about death and more importantly I no longer fear my death. His death was an amazingly calm experience in great part to the way he answered the Five Wishes that were presented to him years before he received his terminal diagnosis. By filling out the booklet and sharing it with family members and my doctor, there should be no confusion or guessing about how I want my last days to play out.  

It’s the best gift I can give those who will want to be with me as I leave.  I don’t know for sure what’s ahead of me after this life but I can take responsibility to make sure I have the kind of death of I want. Choices ranging from wanting flowers in the room or not wanting flowers in the room to not wanting to die at home or requesting that folks do everything possible so that I can die at home; and such things large and small are all covered in the 5 Wishes questions. We answer the questions within the following categories: 1. My wish for what person do I want to make health care decisions for me when I can’t make then for myself. 2) My Wish for the kind of medical treatment I want or don’t want. 3) My Wish for how comfortable I want to be.  4) My Wish for how do I want people to treat me?  5) My Wish for what I want my loved ones to know.

Filling out and distributing the 5 Wishes to key players in my life is greatest gift I can give my friends, my loved ones and my doctors and anyone who is likely to be close by when my health takes a turn and I am close to death.  Giving folks a document providing a roadmap of my requests demonstrates that I have thought through all the tough questions about how I want to be treated and have offered it in black and white for all to see.
I leave a positive legacy representing the respect I have for my own life, the respect I have for my loved ones and those helping me on perhaps the most important journey I will ever make, the path from here to there.
Get your free copy of the 5 Wishes by going to www.hospicepartnerssc.org and click the link to HPSC5wishes.   :fivewishes@agingwithdignity.org

Dying with Hospice Near By

The purpose of the Spirit of Hospice Blog is to educate folks about Hospice as a philosophy and a medical approach to the end of life that has the opportunity to be a positive spiritual experience made up of choices available to each of us.

Dying with hospice near by was the best possible death for Ray. The team of volunteers, social worker, case manager, medical director surrounded us with support, choices, strategies to extend the quality of his life and mine. They were part of every breath we both took from the moment we called them to the day he died, four months after we called and asked for advise and help.

Each death is unique just the way each life is uniquely shaped by our actions, thoughts, dreams, fears and expectations. It has been my experience that death is exactly what we expect. If we see the life as something that can be taken away at any moment we probably value each day, each hour, every minute. If we think of death as something that is to be feared and hidden it is probable that we live our lives in fear and secrecy. What I know is that I want to die the way I live, fully present, in a state of gratitude and grace, accepting all that is and holding no regrets.

That is what I witnessed with my husband who lived up until the moment death began to take his breath away, and then and only then did he have several hours of what turned out to be a gentle passing, like a soft wave climbing closer and closer to my toes on a warm beach I watched his body release an amazing stream of bright light.

Ray died the way he lived; bravely facing life on life’s terms, cleaning up any mistakes, making promises he kept, loving jazz, his kids, his life and me. He left to early for me but it was right on time for him.

We had Hospice staff helping us prepare for death while we extended the quality of his life. I am glad we called them in early to provide coaching, wisdom, compassion, and love to everyone they met when they came into our life.

I don’t want to keep Hospice care a secret for just those who know me. I want to shout it from the mountain top “ you don’t have to do this alone ‘ there are folks who know about life threatening illnesses and how best to maneuver around the symptoms so pain free moments could become quality hours and days that would have been missed had we not asked for the help of hospice workers and volunteers.

I am inspired and engaged in the movement for quality of life through incorporating the reality of death as a subject I talk about, think about, write about… OK, I don’t sing about it yet, but I do all this while my spirit thrives as I live each day fully, knowing it may be my last but it will not be wasted.

By the way, do you know about the 5 Wishes and have you written yours out? My wish for you is as always; wishes for lots of love, laughter and light to come your way.

 Dr. Noe

Talking About the End

Welcome to The Spirit of Hospice Blog. I am starting with the ending. I never wanted to talk or think about death. I kind of ignored the process when my parents were dying -- years apart, but I didn't want to be part of that experience. Then the love of my life, my husband of thirteen years was diagnosied with stage four lung cancer and suddenly I was ready to talk about death, to face death head on, to ask for help, and to eventually turn to hospice as a philosophy and an approach toward death that kept love, light, laughter and joy into the process.

Talking about the end is really starting prehaps the most important coversation we will ever have: how do we want to die? Will we be prepared, will we be fearful?  Will we inspire others to appreciate life more? 

Hospice is my new passion --- really? Is'n't hospice about death? M We should know so much about death and we know so little. How do we prepare for death, ours and our loved ones?  We all get a diagnosis of death the minute we take our first breath. There are, from that moment on, no promises. There are plenty of expectations about a long, healthy, fulfilling life, so few of us want but that is just not always the way it plays out.

Since death is such a real part of life, why do we ignore it?  It isn't just a word, it is a process, or rather a result of having been alive.  

But think about it, if there had been no preparation, no planning, no celebrating about the anticipation of life we would have just plopped into our parents world. Most times women know they are pregnant by the time the baby is ready to exit the womb and enter our world.

Mothers usually get lots of signals that a birth is coming. Symptoms of childbirth come along as a natural steps to not only Her body changes, her mood swings help point to the direction that ‘something’s up’… her extended stomach indicate either a huge shift in eating habits with the diet being mostly Carbs and hot fudge sundaes, or something wonderful is happening, something almost mystical is going on inside the pregnant woman's body. Around nine months after inception the baby arrives, often with lots of preparation.

When we are talking about a diagnoses of a life -limiting illness we usually have months prior to death. We can use that time to prepare, or we can avoid the topic. What would happen if a baby just showed up in the living room one day. That's what happens in some folks life when they are suddenly given the diagnosis that life is ending...sooner than later.

Our job is to talk about death early so there are as few surprises as possible.