Tag Archives: advocate

February 4, 2015 · 12:25 pm

What To Do After You Hear The Word Cancer!

Join us on Wednesday, February 4th at 7 pm EST on HealthCafeLive.com as we welcome noted author, professor, and public speaker, Dr. Stan Goldberg to our show. Author of seven books and numerous articles delivered around the world; Dr. Goldberg has taught, provided therapy, and researched in the areas of learning, change, loss and end of life issues for over 25 years. When you hear the word ’Cancer’ what do you do, how do you react? Our nature is to help, but sometimes we do not know how to ask to help. As a Cancer survivor himself, Dr. Goldberg has a keen perspective on how to transform compassion into skillful behaviors. Listen in and learn how Dr. Stan Goldberg is creating ‘Healing Ties’ all around us!

To listen live at 7:00 pm on Health Cafe Live.com simply click here!

Cannot listen live? NO Worries!!! Healing Ties is available on demand at iHeart Radio by clicking here!

Lost Dreams

Your big opportunity may be right where you are now. Napoleon Hill

Nobody can escape the agonizing losses that are part of our everyday existence —the loss of our dreams. We had thought so long of ourselves as successful, liked and deeply loved. We had hoped for a life of generosity, service and self-sacrifice. We had planned to become forgiving, caring and always gentle people. We have a vision of ourselves as reconcilers and peacemakers. But somehow—we aren’t even sure what happened—we lost our dreams. We became worrying, anxious people clinging to the few things we had collected and exchanging with one another news of political, social and ecclesiastical scandals of our day. It is the loss of spirit that is often hardest to acknowledge and most difficult to confess. ~ Author Unknown

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Tagged as advocate, Leadership

December 2, 2014 · 2:59 pm

Don’t Worry, Be Happy and The Law of Attraction: Healing Ties Radio

By the Law of Attraction you summon the Energy through you, and that is what life is. Ester Hicks

Join us LIVE on Wednesday, for “Healing Tie” radio at 7:00pm on Health Cafe LIVE as The Bow Tie Guy engages with life enthusiast, Betty Rosse on Abraham – Hicks theory of ‘The Law of Attraction.’ Remember the song, ‘Don’t Worry, Be Happy’…well that describes our guest Betty Rosse! Can’t listen live…NO WORRIES! You can listen to Healing Ties on demand at iHeart Radio!

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Tagged as advocate, Caregiver, iHeart Radio, Law of Attraction

November 11, 2014 · 9:30 am

Laughter is the best medicine, then and now.

There cannot be a crisis next week. My schedule is already full ~ Henry A. Kissinger

As I continue to grieve and heal, I look back at those moments during our caregiving journey that brought laughter to our hearts. Richard had such a dry sense of humor and a quick wit and if truth be told, he really did enjoy having his picture taken too. We used humor and laughter quite bit during our Caregiving journey. Whether it was a trip out for a delicious scoop of ice cream or a visit to get a hair cut, we tried to inject as much humor into our day as was humanly possible.

IceCream1

We let our humor combat some of those dark days, too. Richard loved Monty Python, especially ‘Spamalot’…I think we both saw the play three times. There was a day, early on after the diagnosis where Richard was playing the music from ‘Spamalot’ when all of a sudden the famous song,

Spamalot (Photo credit: Wikipedia)

“He’s Not Dead Yet” started to blare through the Bose speakers. We both looked at each other in utter amazement; we laughed, we cried, we hugged each other and we laughed some more. That song became our battle cry, and because of that song, the laughter we shared, provided that spark which enabled Richard to live his life to the fullest.

As our caregiving journey continued to unfold, there was no doubt that we traveled the journey together, side by side, one by one. We shared in the emotions, we shared in the joy and laughter, knowing that sorrow was somewhere around the corner. Yet the sorrow that we shared was the realization that our time together was not going to be as long as we would have wanted it to be. No more, no less.

The lesson that I’ve learned during our Caregiving journey was that I was the co-pilot, Richard was the pilot. Richard was the one going through the radiation treatments, Richard was the one taking the medicine; I was there in a supporting role, simply loving, caring and coping as best we could. As Caregivers, our journey is filled with difficult peaks and valley’s, we try to pave the roads we journey so that the path is as smooth possible, so when there is a problem at hand, there is always a gentle breeze at our caree’s back. Caregiving is filled with so many raw emotions, that sometimes we forget that we are on a beautiful, yet difficult journey together. For Richard and I, humor and laughter helped lightened some very dark days. For us then, and for me now, laughter is truly the best medicine. Laughter allows me to grieve and heal.

‘Healing Ties’ radio show, live every Wednesday at 7:00pm on Health Cafe LIVE by clicking here

Cannot listen live…No worries! Hear our podcast anytime on iHeart Radio by clicking here

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Tagged as advocate, Caregiver, Caregiver Support, Caregiving, Humor, Monty Python, Spamalot

November 5, 2014 · 9:30 am

Listen In Love

The First Duty Of Love Is To Listen.

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.

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, making 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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Tagged as advocate, Caregiver, Family Caregiver, Hospice, LGBT Caregivers, LGBT Seniors

November 23, 2013 · 10:52 am

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 to 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?

When 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 the 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

‘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!

The Call For Hospice (thepurplejacket.com)
28th Radiation Treatment Complete. Last and FINAL treatment! In Remission!! (albeefine.com)
Sea salt and baking soda, best all natural remedy for curing radiation exposure and cancer (naturalcuresnotmedicine.com)
What’s On Your Refrigerator? (thepurplejacket.com)
On Being An Advocate (thepurplejacket.com)
Hypofractionation of radiation therapy in treatment of localized prostate cancer (prostatecancerinfolink.net)
Never Alone (thepurplejacket.com)

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November 23, 2013 · 10:24 am

Whose Journey Is It?

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

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

‘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!

The Call For Hospice (thepurplejacket.com)
28th Radiation Treatment Complete. Last and FINAL treatment! In Remission!! (albeefine.com)
Sea salt and baking soda, best all natural remedy for curing radiation exposure and cancer (naturalcuresnotmedicine.com)
What’s On Your Refrigerator? (thepurplejacket.com)
On Being An Advocate (thepurplejacket.com)
Hypofractionation of radiation therapy in treatment of localized prostate cancer (prostatecancerinfolink.net)
Never Alone (thepurplejacket.com)

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Filed under Caregiving, The Purple Jacket

Tagged as advocate, Caregiver, Caregiving, Health, Hospice

November 9, 2013 · 11:29 am

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.

When 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 the 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!

Hospice to pay $3 million for Medicare billings (miamiherald.com)
On Being An Advocate (thepurplejacket.com)
Celebrating 30 years of Hospice care (medicare.gov)
National Hospice Month (highpointhealthsystem.wordpress.com)
Hospice care keeps the focus on living (pantagraph.com)
Crossroads Hospice honors veterans (newsnet5.com)
Hospice to thank community supporters (utsandiego.com)
Operations cease at RiverStone Health’s Horizon Hospice Home (billingsgazette.com)

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Tagged as advocate, Caregiver, Health care provider, Hospice, The Bow-Tie-Guy

November 9, 2013 · 11:17 am

Eliminating A Health Care Provider

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

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

Hospice to pay $3 million for Medicare billings (miamiherald.com)
On Being An Advocate (thepurplejacket.com)
Celebrating 30 years of Hospice care (medicare.gov)
National Hospice Month (highpointhealthsystem.wordpress.com)
Hospice care keeps the focus on living (pantagraph.com)
Crossroads Hospice honors veterans (newsnet5.com)
Hospice to thank community supporters (utsandiego.com)
Operations cease at RiverStone Health’s Horizon Hospice Home (billingsgazette.com)

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Tagged as advocate, Caregiver, Health care provider, Hospice, The Bow-Tie-Guy

October 29, 2013 · 5:08 pm

On Being An Advocate

Knowledge is knowing what we do not know: Ralph Waldo Emerson

As we move into the second week of TLO’s palliative radiation treatments, we experienced a few challenges over this past weekend that needed the attention of the Hospice Nurse. I knew it was just a matter of time before we would enlist their services, it is comforting to know that our ‘friends’ at Hospice of Broward County are just a phone call away.

One of the most important components to being a Caregiver is to know your strengths, and to know your weaknesses. While I know I have a Ph.D. in TLO, I am also aware of my (many) limitations. I’m not a pharmacist, doctor or nurse. Remember…Knowledge is knowing what we do not know. My strength in Caregiving is advocacy; Advocacy is without a doubt the most, if not the most important role of a Caregiver. My Ph.D. in TLO comes in handy when it is time to advocate. We will get to that in just a few!

When a new problem arises, there is no time to guess, wonder out loud, talk about it…it’s time to act. Rather…it is time to advocate! TLO had started to show signs of Edema is his feet and ankles on Thursday. Aware that he has congestive heart failure to go along with the myriad of his health calamities the extreme Edema was something new to his health care puzzle. While I ‘knew’ an additional dose of furosimde would probably be the solution, (as well as elevating his legs), I did not know if adding the additional dose would be appropriate with the new MEDs that have been prescribed over the last week. A quick call by the Hospice nurse during her home visit on Thursday ensured a quick call to the Doctor to secure the increase the furosimde dosage. Done!

As we moved into Sunday, water continued to build on his feet and ankles, “the Edema was getting worse” I thought. “I am going to call Hospice,” I said to TLO. “What are they going to do for me” TLO said. “I’m pretty sure they are going to be able to do more than I can do for you at the moment because what is happening right now is just a tad out of my comfort zone.” I said. When the phone rang at Hospice, I was greeted by a warm voice who listened as we talked through a couple of options that might help in this situation. My Ph.D. in TLO comes in handy when debating with him what is the right thing to do.

While there was really no resolution on Sunday to his Edema, things started to change on Monday with a few calls and a visit from the Hospice Medical Director. It was perfect timing for the Doctor to make her home visit as we were able to address first hand not only the Edema, but the entire care plan and philosophy of TLO’s care as we move forward in our Hospice Journey. Having the Doctor in our home for over two hours not only paid medical dividends for TLO, her presence demonstrated to both of us the special care that Hospice provides its patients. The doubter of Hospice, TLO became the believer after her visit. “How did you get her to come to the house,” TLO asked…’She came because your a special patient,” I retorted!

What amazed me about her visit was not only the care she provided to TLO, but the time that she took to educate me on his MEDs; the Doctor was there for both of us! While going through his MEDs, the Doctor provided me with a ‘cheat sheet’, written out in layman terms so that I would have a better grasp of the new pain MEDs. Remember the thing about knowledge! Now I am in a better position to advocate because I’ve gained more knowledge about the process with his new MEDs.

Advocacy comes in many shapes styles and forms; I’m not the type of advocate who is in your face, raises his voice, or creates a scene. However, I will engage professionals, ask questions until I am blue in the face to assure TLO has what he needs. Often times, we as Caregivers forget that we do have a Ph.D. in the one we care for. Our Ph.D. is just as important as any professional who is on the care-team because we spend the most time with our Caree and know them the best. That’s why the role of advocacy is essential in Caregiving. Physicians can write prescriptions, nurses can administer treatments, CNA’s can provide care, yet the key component to all these professional services is the personal knowledge or rather, the Ph.D. Caregiver’s have on their Caree. All these care components have to be in unison for optimal success.

Caregivers’s Ph.D. usually come just like those professional Ph.D.’s…burning the midnight oil, sleepless nights, worry, stress, etc. Caregivers advocacy is like taking an oral test in school, you have to be prepared for the unexpected, you must show up and give it your best try! Knowing what I don’t know has helped me be a better advocate; having a Ph.D. in TLO is priceless!

Caregivers, I bet you have a Ph.D, too!

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