Tag Archives: Hospice

When Boundaries Become Blurred


Join us on Wednesday April 29th on Health Café LIVE.com  at 7:00 pm (EDT) as we visit with Melanie McMillion from TrustBridge Health.  With 20 years of clinical experience working in hospice, palliative care and bereavement, Melanie has extensive skill in  assisting people and families with chronic and terminal health issues, caregiving stress and grief and bereavement. On Wednesday’s show, we are going to have an upbeat conversation about Caregivers working in healthcare and the importance of professional boundaries.  Tune in and learn how Melanie is creating Healing Ties all around us!  Cannot listen live?  No Worries!! Healing Ties is available on  demand at iHeart Radio and now on UK Health Radio.

To listen live on Wednesday at 7:00 pm visit HealthCafeLive.com  or simply click here! 

To listen to all of our shows on demand visit our iHeart Radio Channel by clicking here!

Healing Ties is on UK Health Radio, too by clicking here! 

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Melanie McMillion is a LMHC  and a Field Educator for TrustBridge Health. www.TrustBridge.com With over 20 years of clinical experience working in hospice, palliative care, and bereavement, Melanie has extensive experience assisting individuals and families with chronic and terminal health issues, caregiver stress, and grief, loss and bereavement.  Melanie lectures on these important topics and today we are visit with Melanie on the importance of maintaining professional ethics and boundaries, caregiver stress management, and end of life care

 

 

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What Role Does Mindset Play?


Please take a moment to read this wonderful blog post about the role of one’s mindset, by Ira Woods. Ira’s wonderful blog, Conscious Departures, is a must read for all Caregivers!

My comments on the Ira’s wonderful post are below.

On my 57th birthday in February of this year, the oncologist told Richard and I that the cancer had spread from his spine to his shoulders, ribs pelvis and his liver. (This was just three months after completing 6 weeks of intensive radiation treatments on his spine) It was a chilling way to start one’s birthday; ‘do you want to continue with more radiation’ asked the oncologist? What do you say at that point? Subsequently, our primary care doctor called (who we simply adore), saddened by the news herself, said ‘we must let him die with dignity.’ Hard conversations to have, knowing that the end is just around the corner.
Richard was always a fighter. Upon the original diagnosis of 3 to 4 months to live in 2011, he beat the odds. Cancer was not the winner, love was the winner.

Richard died peacefully just 19 days after my 57th birthday. Even when he was in hospice, I just figured it was a matter of time before he just got out of bed and would come home with me. I’ve come to realize those thoughts were coming from being his partner, because that is what I miss the most about him not being here with me.

Caregiving is two-fold, especially when you are in a caregiving role for a spouse or partner. In sickness and in health means quite a bit when two people are committed as one. Caregiving goes beyond “making the person feel comfortable.” Caregiving takes a relationship to the next level, it binds souls, it allows you to do things that you never thought you were capable of doing. In sickness and in health, love is a beautiful thing.

I believe when we are in after caregiving is “where our words and mindset play a bigger role than what we think.” When we are in the middle of Caregiving, we are so focused on doing, that we often forget about simply being. When caregiving ends, dealing with the relief that the caregiving is over, along the sadness of the lost, on top of the grief simply to move on is when our words and mindset play a bigger role that what we think.

I know that I have the capacity to be a ‘professional caregiver’- maybe some day I will volunteer in hospice so that I can share our experience which hopefully will be of benefit to others. For me it is OK to admit that I don’t miss the day-to-day chores of caregiving. I don’t miss the trips to Walgreens, coordinating doctors visits, worrying about rides to radiation, etc. Yet if he was sitting right next to me now, I would do it in a moment notice, without a problem, without a complaint. I just own up to the fact that I just miss my best friend, pal and partner. That is how my mindset helps me get through the days.

Conscious Departures

MindsetI always keep a lookout for good, interesting journalism on end-of-life caregiving and I have to say that the New York Times has really delivered some great articles over the last several years. A few weeks ago another article caught my attention, not about caregiving per se, but about a subject that I believe needs to be part of the caregiving conversation; mindset and health.

The NYT article “What if Age is Nothing But a Mindset?” highlights the work of psychologist Dr. Ellen Langer, a Harvard psychology professor.  Back in the early 1980’s Langer ran a psychology experiment with a group of men, in their seventies, who were in good health but manifesting typical old age deterioration; walking with a cane, arthritis, stooped over, weakness, etc.  At the conclusion of the experiment, five days later, the men had gone through a transformation. “They were suppler, showed greater manual dexterity and sat…

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Listen In Love


The First Duty Of Love Is To Listen.

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Celebrating Richard’s 83rd birthday January 24, 2014

When Richard mentioned ‘Hospice‘ for the first time in December of 2011, it opened the door  for one of the most beautiful and meaningful conversations that two people could ever have over a sensitive topic. Just a few months after his diagnosis with esophageal cancer, this conversation happen so matter-of-factually, that by the time the conversation was over, there was no pain, no agony; just  lots of tears from an honest conversation between two people who just happened to loved each other.

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Chris and Richard is Arles, France 2006

Many years ago I had the opportunity to intern in hospice, it was quite a remarkable experience. High profile doctor’s humbled; broken families reunited; husbands, wives, siblings children, partners letting go, provided me with the opportunity to look at hospice through different set of  lens. I was, and continue to be, forever grateful for that experience.  While I tend to be on the spiritual side, Richard claimed to an agnostic Jew. I always found that funny because Richard was  one of the most spiritual and ground persons that I have ever met. Often misunderstood for his gruff demeanor and direct comments, Richard was rooted in his clear thoughts and perspective. You may not like what he had to say, but you never walked away from a conversation with him without knowing his opinion or where he stood.. It is really the best way to communicate: boy do I miss those conversations with him.

Honest dialogue often brings out the best and sometimes the worst in people. However without honest dialogue, what then is communication? Our decisions during our caregiving journey was guided through our honest dialogue.  I remember Richard clearly saying, “I will tell you when I’m ready to go to hospice!”  When I look back to that day on March 3rd when he got out of the chair on his own and walked to the gurney to be taken to hospice, that was his way of telling me that he was ready to go.  Hospice, end of life, life transitions, however you want to frame it,  we both knew where we stood,  we both knew what was important to us and we both knew that when the time came for hospice,  we would embrace it and deal with it.

Planning for the day, when there will be no more days is challenging.  How does one really do that?  By having an honest and open conversation before there is the need.   While there may not be a need for Hospice today, there is a need to talk about Hospice.  The effects of a diagnosis of Cancer are enormous on everyone, yet we must not allow any disease to drive us.  Fear is debilitating, HourGlassmaking a decision while in fear, can be crippling.   Find a way to have ‘that’ conversation about hospice.  In our case, the conversation just happened, but that is not the case for every caregiver and their caree. One way to make this difficult conversation comfortable is to ask open-ended questions, I.e., ‘It is important for me to know your thoughts on the type of care you want to receive so we can make good decisions together.’

As advocates for hospice, Richard and I  looked at hospice as a way to celebrate life in all of its stages.  Hospice is just not for the patient, hospice is for the entire family. While Richard  and I might have shared different opinions on life after death; one thing that we did know is that while we are alive, we are going to enjoy every second, minute, hour, day, month, year we had left. I think we accomplished that because we had the ability to talk openly about his wishes.  The memory of these intimate conversations with him is what helps me get beyond my grief and allow me to heal.  My you find your peace in your after Caregiving journey, too.  

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Letting Go, Together As One


We loved with a love that is more than love ~ Edgar Allan Poe

As I pulled up to the boat dock on Tuesday, I was amazed at what a beautiful,  clear and sunny day it was in South Florida. At this time of year, especially in the height of hurricane season, one never knows what the weather might bring us. The boat caption’s words last week after I booked the reservation–“we will sail at 9:30 am, weather permitting–reminded me that even when we put our best plans in place, there are things beyond our control.   BoatWaves

Sure, we all know that we cannot control the weather, we can only work with it.  Yet for me, the plans to sail on Tuesday, September 9th was significant because Tuesday, September 9th was the six month anniversary of Richard’s life transition and it was time for us to let go, so that we could be together again as one.   I’ve never experienced a burial at sea, so I had no personal experience to go by, but I did know that what was important for both Richard and I, was to be set free from the perils of death and be free, free so that we can be together  again as one.

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On this beautiful sunny Tuesday morning, it was a small gathering of friends as we motored out into the Atlantic ocean.  Making the decision to bury Richard’s ashes at sea was something that we had both talked about, and something that I knew he approved of since he buried his first partner, Herman at sea in 1999.  The biodegradable boxes were a work of art; one blue with the (last) remains of Herman and one white with the  remains of Richard.  Yet even in those conversations about burial at sea,  you really don’t know if you can ‘do it’ until you get right to the point or rather, the day of ‘doing it.’

In a sense, I knew that placing Richard’s ashes at sea WAS my last act of Caregiving for him.   Sure, I had the option of the funeral home ‘doing it’ for me, but I knew deep inside my heart that this was my sole responsibility and something I wanted, and needed to do.  Then the conversation started on the boat.  “I understand that we have to be more than three miles from shore before the boxes can be placed in the ocean,” I said.  Then in unison, two of my friends said…”You’re going to just place his box in the ocean, he wants to be set free, just like you, let the ashes out of the box and set both of you free!”  “Hummm,” I thought…”Another Caregiving decision to make, and how I thought those decision were behind me!”

As the boat slowed down and then anchored, I knew that we had approached our destination and it was my turn to act.  I had no special words to say, yet I shared pictures of Herman and Richard and talked about their 43 years together as I placed Herman’s beautiful blue box in the ocean. Ocean 2 As I reached for Richard’s beautiful white box, I was still unsure of what I was going to do, then the box slightly opened, I could hear him speaking to me, “let me be free!”  After a few words, I took Richard’s box, and spread his ashes in the ocean and then watched as a beautiful array of colors gleamed at the top of the ocean as his ashes floated away on his eternal cruise.  As difficult as this was, as I watched his ashes float away, there was a sense of peace that came upon me that is difficult to explain.

As the box emptied of Richard’s ashes and then dropped into the ocean, the caption circled Richard’s starting point of his life-long cruise, where everyone placed  roses in the water,  and I thought about how happy he was because he was free.  It was at this point when I realized that I was free, too.

My last act of Caregiving for the one I continue to love, was to set him free, so that we both could be free.  BRScar2

You see, I did not mind being Richard’s caregiver, in fact I believe it is an honor to be a Caregiver, but for now and forever, I can go back to just being his partner, which is what I miss the most.  My faith tells me that I will see him again; my mind tells me that he is now forever free; my heart tells me that he 20120407-002416.jpgis right next to me.

For now, he is just a port ahead of me on his life-long cruise, catching up with family and friends, while speaking to me in different ways, because  I know that one day, I will arrive at his port and catch up with him on that life long cruise.  I’m sure he’ll have reserved a good cabin!

 

 

 

 

 

 

 

 

 

 

 

 

 

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Day By Day: Grieving and Healing


Experience: that most brutal of teachers. But you learn, my God do you learn.  C. S. Lewis.

Finding the energy to blog on The Purple Jacket has been difficult for me these past few months.  Let’s face it, grieving can be a full-time ‘job’ which takes quite a bit of energy.  But grieving can be healthy too.  Today I experienced a form or healthy grieving by visiting  Gold Coast Hospice where Richard made his life transition, to say hello to the staff and present them with gift as a token of my appreciation for the kindness and love that was demonstrated to us while we were both under their care. This visit had been planned in advance and while I was unsure of what my initial reaction would be, I knew that the staff would greet me warmly.

Kermit  As I approached the Hospice unit, I was struck by the utter calmness that suddenly came upon me.  My eyes immediately looked to the right as I entered the ward as Richard’s room was the first room on the right side entering the unit.  As I walked past and looked in the room through the crack of the door, it seemed fitting that today, this room was vacant.  Suddenly I heard, “He’s here” from the  Hospice nurse who came to the house to admit Richard to the unit in March. I knew right then and there that this was going to be the right thing for me to do today!

Hugs, well wishes, great conversation and tears followed as we greeted each other and shared stories. Fittingly, we moved into ‘that room’ for my formal ‘Thank You’ to the staff.   “As a part of my healing process, it was important for me to come here today to say hello, and to say ‘Thank You’ for allowing us to spend our last days together.”  In the six days that we were in the hospice unit, there was not one time were I did not feel welcomed, all we felt during our Flowersstay was love…I wanted to return the favor!

“It is important for me to present you with a copy of a pictorial book which was given to me by the two great journalist from the Sun-Sentinel who followed us on our final journey together and wrote our story, “In Sickness and In Health: A Couple’s Final Journey” which was published in April.”  More tears, more laughter, more love!  And yes, I think it is possible to cry and be calm at the same time.

There are many books written on grieving, yet one thing is certain; grieving is an individual process that is unique to each one of us.  In order for me to continue in the healing process, it was important for me to reach out and make this journey to the Hospice unit.  You see, the pictorial book that was provided to me by Diane and Carline from the Sun-Sentinel is the best book on (my) grieving that I have  read.  I am fortunate to have such a wonderful, life-long gifts of this book, and the article in the Sun-Sentinel. By sharing the book with the Hospice staff, and subsequently, other families who come to the unit, was my way of giving back, saying thanks and continuing my grieving and healing process.

Life is much different now.  There are more challenges ahead, yet in order to take on these challenges, I have to find a way to soften what has transpired.  There is no easy way around grieving, it is important for me, in my grieving process, to  simply just ‘own it.’   Today helped soften the anguish of missing him: May your grieving process be filled with  few hills and always, a gentle breeze at your back.

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Everlasting Love: TLO Is At Rest And At Peace


Love is the beauty of the soul ~ Saint Augustine

Bernard Richard Schiffer January 24, 1931 ~ March 9, 2014

Sophia Looking Gay

LilyThe house is quiet; so different, so empty. The beautiful aroma of the stargazer lilies fills the house as one by one, they bloom in their mystical way. Just as the lilies transition from a small bud to a beautiful flower; TLO’s transition into eternal life was just as mystical, and just as beautiful.  Holding him in my arms as he took his last breath on Sunday, March 9th at 1:20 pm was surely a  paradoxical honor, however we would not have had it any other way.

Our Caregiving journey ended on Sunday, March 9, yet this is not the end ofSchiffer blend our love, we just get the chance to know and love each other in a different way.  Words can’t describe how I feel at this moment, but I take comfort in knowing that he is pain-free and he left this world with a beautiful smile on his face.  When I placed his head back down on the pillow after his last breath, I knew that he was in a better place;  no stress, no strife, no agony, only peace.  I’m sure my faith will grant me those same gifts in the months ahead.

We have been on this Caregiving journey for over two years now, yet it seems like yesterday when I wrote my first post on ‘The Purple Jacket.”   Writing proved to be therapeutic for both of us, however, it is strange to realize  that the only two posts that we will never get to share with each other is this post and the post from last week, Approaching The Final Destination.  I do take comfort in knowing that TLO enjoyed reading about our Caregiving journey as much as I enjoyed writing about it.

The comfort and love I have felt from family and friends over the past week has been heartfelt.  May it continue. While on this Caregiving journey, so many people have touched our lives along they way.  I am so grateful for all   your words of encouragement. Denise Brown from Caregiving.com and her vast network of Caregivers who have been our extended family during our journey, are friends for life.  Even in the midst of the intensity of daily Caregiving, Denise and our extended family have been there at a moment’s notice to extend comfort.  Word’s can’t describe how wonderful TLO’s primary care physician, Dr. Milica Starcevic of Broward Health, has been to us during our time in her care.   Dr. Starcevic’s genuine care and concern for us will always have a special place in my heart.  It goes without saying how wonderful the entire staff at Gold Coast Hospice treated us as well.  The word that comes directly to mind when thinking about the staff at Gold Coast Hospice is ‘authentic.’  There was not one staff member who walked into our room who was not authentic in their care for both of us.  Like ministry, working in Hospice is a special calling, not everyone can do it, but the staff that we met from the administrator down, was just splendid.  We never had a worry or concern, the entire Hospice staff honored us and our relationship.

For me, life does move on, just in a different way.  As much as the two of us talked about ‘this day,’ one can never prepare for an experience like this.  He is forever in my heart, sealed with that lasting smile he left for20120407-001829.jpg me when he made his transition.  One thing that TLO asked, well…demanded…is that I start to take better care of myself.  That is my immediate intention, to create some  ‘healing ties’ so that I can become  stronger mentally and to get physically fit because on Monday, March 10th I haven’t only started a new chapter in my life, I started a new Caregiving journey as well.  That new journey is to be a Caregiver for myself.   Many caregivers have this trait where we put our needs second to the needs of our Caree.  It is easy to say we are going to take better care of ourselves, but harder to do when you’re in the midst of Caregiving.  My advocacy in the days, months and years ahead will focus on the importance of Caregivers taking better care of themselves because it is important not only for the Caregiver, but important for the Caree as well.  If I can learn to be half the caregiver to myself as I was to TLO, I think I’ll be in pretty good shape.  Following this path allows me to be with him while honoring his wishes for me to take better care of myself:  It’s a ‘win/win’ don’t you think?

As I write this on ‘The Purple Jacket”, I do not have any fancy words to share or meaningful slogans to portray, I just want to tell you about a story of love.  Two people connecting from different sides of the religious aisle, making a go at life, while forming a meaningful relationship that even to this day,  is difficult to describe.  TLO might have been slight in stature, but he stood tall in life.  With few regrets and quite a bit of joy, TLO lived his life his way. I have learned so much about being strong from him. He was and still is my best friend, pal and partner. My Caregiving cape wanted to fix everything inside of his body; eleven years just whisked by within one week in hospice with me asking that final day…”Lord, can’t I have just one more hour, one more minute to know him..to love him?”   As I gently laid his head back on the pillow after he made his transition, I was comforted to see a smile on his face.  I knew he was pain TLOCJMfree and I knew that he left this world in love and yes, he did beat Cancer!

In the weeks ahead, there will be a few announcements on ‘The Purple Jacket’ about special events that are in the works to celebrate the life of Bernard Richard Schiffer.  Our Caregiving journey has been documented over the past seven months with reporters from the South Florida Sun-Sentinel; filled with video and pictures of the two of us,  we look forward to sharing that article with you when published is just a few short weeks.   I will be writing again in the months ahead, but this space here on ‘The Purple Jacket’ is reserved for my best friend, pal and life partner, Bernard Richard Schiffer for without him, there would be no ‘Purple Jacket!’

But for now,  I must take a breath and get some rest.

   You seeWe Might Have Had Cancer: But Cancer NEVER had us.  The thing we have is Love and come to think about it, Love is the most important gift of all!

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Approaching The Final Destination


I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love ~ Mother Teresa

With TLO’s recent diagnosis that his cancer has spread to multiple parts of his body,  I have to admit this news, along with intense Caregiving over the past month, has put me in a position where I have hit the wall with LifeChangesblogging. While  I’ve learned over the past two years  that writing about TLO’s bout with esophageal cancer has provided a great deal of comfort for both of us, I now find it interesting that writing about the end stages of our Caregiving journey to be a tad more difficult. 

And that is precisely where we are at in our Caregiving journey, we are at the end-stage.

TLO was admitted to Gold Coast Hospice as an inpatient  on Monday, March 3rd.  We are in a small 8 unit facility under the umbrella of Broward Health. With the mindset that we were going to inpatient care Hospice-1“just for a few days for an evaluation and re-set of his medications;”  we have since learned that God and TLO’s body had other plans.

 The last thing he said to me on Monday night was…”Please go home and get some rest, I will be OK here and we’ll see each other in the morning.”  Reluctantly I agreed with him and headed home.  Now knowing that this is going to be our  last lucid conversation we have on this journey is fitting, for in  his time of strife, his  concern and love for me was first and foremost in his mind. We tend to share that similar trait when caring for each other.

TLO has been resting comfortably in our hospice suite since Tuesday; in and out of consciousness, his little body is ravished by cancer.   “We don’t know how this man has lived so long with the amount of cancer that is 1385583_607513719290066_905165614_n (1)inside of him,” the hospice doctor said to me Friday. “It is only by the grace of God and the love that the two of you have that has kept this man alive.” The Doctor’s words are comforting because it has taken me a few days to get beyond the quick transition from our Monday evening conversation, to finding him resting peacefully since my arrival on Tuesday morning. I suspect that he needed that time alone on Monday night moving into Tuesday morning, so that he could rest and prepare for his journey.   

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TLO with my sister Sissy, Feb 11, 2014

While in the midst of Caregiving, we often lose sight of what is transpiring right in front of us because we are so intent on service and care. Trips for radiation become routine because that is something that is just a part of our day?  With one of my sisters here helping us for the past month, I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that. 

“If you could look inside his body you would understand what is going on inside of him” was another comment the hospice doctor said to me on Friday.  This ‘trip’ has been hard for me to accept because I am so used to him just getting up and continuing on.  He is such a fighter! Yet this ‘trip ‘ is just a little bit different because he has acknowledged that he is tried, he has acknowledged that he is ready and from our previous conversations,  he knows that I am going to be safe.  So in just a few short hours, I have had to learn how to separate my emotions from the reality that we face; TLO was able to do that after I left on Monday night. In fact, he had prepared for this day longer than I have ever realized.

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Chris and TLO at SunServe’s Hat and Garden Party 2013

I have had to put into perspective that this journey just did not start on Monday of this week, this journey started over three years ago in a little Greek restaurant in Indianapolis when there was the first indication that something might be wrong with his throat.  Through all the tests and tribulations of the last three years, not to mention the original diagnosis of 3 to 4 months to live in 2011, I’d say we have had a pretty darn good run at it.  Up until recently, we have had more good days and bad, and along the way on this journey, we have met so many wonderful friends from around the world who simply ask…”How’s TLO”.  The Caregiving community is so vast, so strong and so very comforting;  Where would we have been without you!

TLO is just mighty fine my friends!  He is resting peacefully, and we have been able to communicate through touch and some words.  He now gets to run the show and call the shots. Actually, he’s been doing that for quite some time, I’ve just been here proud to be along for the ride.  Right now I just want to be his partner, holding him close, caressing and kissing him while telling him that I love him with an everlasting love.  His squeeze of my hand gives me strength and helps take my sadness away.

You seeCancer is not winning here.  Love is winning here.

The Bow Tie Guys

 

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Whose Journey Is It?


 The longest journey you’ll ever take is from the head to the heart. Regina Rosenthal 

As we come to the end of the 5th week of palliative radiation treatments, the word ‘journey’ keeps resonating with me.   Our recent journey with Hospice of Broward County proved to20131023-101238.jpg be bumpy; we’ve moved on from that  bumpy road and have brought in new ‘friends’ to help us continue on with our journey, we’re hoping for smooth sailing as we forge ahead on our ‘new’ path.

There are so many components when planning a journey.  GPS devices have become the fad; some might even spread out an old fashion map on their kitchen table to highlight the path of the journey.  Planning a Caregiving journey is a little more difficult than planning a road trip, or is it? 

ID-10030063When we are planning a journey, there is usually someone who is in charge, a leader, guide, pilot, etc.  All those fancy electronic devices that help plan a journey, goes for not if there is not a leader orchestrating the plan.  The lesson that I’ve learned during our recent Caregiving journey is that I’m the co-pilot, ‘TLO’ is the pilot. ‘TLO’ is the one going through the radiation treatments, ‘TLO’ is the one taking the medicine…’TLO’ is the one that has the cancer inside of his body.  For me to assume that I know how he feels, pales in comparison to his reality of his health and how he feels.

There is no doubt that we are both on this journey together; we share in the emotions, we share in the joy and we share in the sorrow during this journey.  We both know that there is a fork in the road that lies ahead of us that no Map or GPS will detect. We also know  that trying to dodge that fork in the road will be  unavoidable.    The ‘funny’  thing about that fork in the road is that at some point in our life, each one of us will find its path and end up at the same destination.  As Caregivers, we try to pave the road so that when that fork does arrive, there is a gentle breeze at our back.  Caregiving is often filled with so many raw emotions that sometimes we forget that we are on a beautiful journey together.    That’s why sometimes the longest journey that we will ever take is from the head to ID-10047257the heart.

While we know that fork in the road will take us on a different path, we understand that at some point, we will end up at the same destination. For now,  we will continue on our journey together as pilot and copilot creating, and enjoy, that  gentle breeze at our back that no map or GPS device can locate for us.

Thank You for being our copilot’s; we are pleased that you are on this journey with us helping us create that gentle breeze at our back!

You see…We might have cancer, but Cancer does not have us! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

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‘Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

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Whose Journey Is It?


 The longest journey you’ll ever take is from the head to the heart. Regina Rosenthal 

As we come to the end of the 5th week of palliative radiation treatments, the word ‘journey’ keeps resonating with me.   Our recent journey with Hospice of Broward County proved to20131023-101238.jpg be bumpy; we’ve moved on from that  bumpy road and have brought in new ‘friends’ to help us continue on with our journey, we’re hoping for smooth sailing as we forge ahead on our ‘new’ path.

There are so many components when planning a journey.  GPS devices have become the fad; some might even spread out an old fashion map on their kitchen table to highlight the path of the journey.  Planning a Caregiving journey is a little more difficult than planning a road trip, or is it? 

ID-10030063When we are planning a journey, there is usually someone who is in charge, a leader, guide, pilot, etc.  All those fancy electronic devices that help plan a journey, goes for not if there is not a leader orchestrating the plan.  The lesson that I’ve learned during our recent Caregiving journey is that I’m the co-pilot, ‘TLO’ is the pilot. ‘TLO’ is the one going through the radiation treatments, ‘TLO’ is the one taking the medicine…’TLO’ is the one that has the cancer inside of his body.  For me to assume that I know how he feels, pales in comparison to his reality of his health and how he feels.

There is no doubt that we are both on this journey together; we share in the emotions, we share in the joy and we share in the sorrow during this journey.  We both know that there is a fork in the road that lies ahead of us that no Map or GPS will detect. We also know  that trying to dodge that fork in the road will be  unavoidable.    The ‘funny’  thing about that fork in the road is that at some point in our life, each one of us will find its path and end up at the same destination.  As Caregivers, we try to pave the road so that when that fork does arrive, there is a gentle breeze at our back.  Caregiving is often filled with so many raw emotions that sometimes we forget that we are on a beautiful journey together.    That’s why sometimes the longest journey that we will ever take is from the head to ID-10047257the heart.

While we know that the fork in the road will take us on a different path, we understand that at some point we will end up at the same destination, just at different times. For now,  we will continue on our journey together as pilot and copilot creating, and enjoy, that  gentle breeze at our back that no map or GPS device can locate for us.

Thank You for being our copilot’s; we are pleased that you are on this journey with us helping us create that gentle breeze at our back!

You see…We might have cancer, but Cancer does not have us! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

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‘Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

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Eliminating A Health Care Provider


It’s not what you look at that matters, it’s what you see…Henry David Thoreau.

As you’ve heard me state many times before here on ‘The Purple Jacket,” one of the most important roles that  a Caregiver plays is that of an advocate.  Advocacy came in full force this week when we had to eliminate our choice for Hospice and seek other assistance for our current health care journey.

thumbsdownWhen we established services with Hospice, I had anticipated a fluid relationship that would be built on clear and consistent communication.  That has been far from our experience: I would wager that many of you are shocked by this revelation! From the start of our relationship with Hospice, I have coined Hospice as our ‘friends.’  It saddens me that our ‘friends’ were such a disappointment.

It’s difficult to put my finger on how this ‘friendship’ went sour, yet from theBWI_125sq onset of a bumpy  admission process, to the latest problem with a medication order, it became quite clear to me that ‘our friends’ do not seem to be able to communicate in a timely manner with their clients, nor work within a team of health care providers. Cancer is difficult enough, yet when “TLO” indicated that ‘our friends’ had become an “irritant,” I knew it was time to step in and eliminate them as a part of our care team.

I’m confident that any Caregiver and/or advocate would agree that what is most important for any health care team, is to work in unison, with one taking the lead role.  In the almost four weeks since we enlisted our ‘friends’ to be part of our team, their failure to communicate with other health care professionals on our team was of great concern to me.  Over the past two years since TLO was originally diagnosed with esophageal cancer, we have had tremendous support from his primary care physician, Dr. Milica Starcevic, his oncologist, Dr. Luis Barraras and his cardiologist, Dr. Harold Altschuler. The support we have had from these fine physicians has been based  on clear and concise communication.  They share in the care plan for TLO and work happily within a team.   A major player in his care, our ‘friends’ at Hospice severely dropped the ball!

When we invited our ‘new friends’ into our home, we were thankful because we both knew that we could not do this alone.   We both felt that adding them to our team  would be of benefit, because when we looked at what our  new ‘friends’ could offer us, we were impressed.  But what really mattered was what we saw from our ‘friends’ that shaped our impression. 

I will continue to be a big supporter of Hospice because I believe in the mission of Hospice. But just like in any business, not all service providers are alike.  I do not hold any animosity toward our former ‘friends’,  but I do hope that they have learned something from our experience:  I know that I have!  I think Henry David Thoreau said it correctly: It’s not what you look at that matters, it’s what you see.

You see…We Might Have Cancer, But Cancer Does Not Have Us! 

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