Category Archives: Hospice

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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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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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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On Being An Advocate


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

Knowledge

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 toID-10053858 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!

ID-10055013What 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!

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Hello and Please, Come In!


Before I refuse to take your questions, I have an opening statement…Ronald Reagan

20131023-101238.jpgAs we walked into the office at the radiation oncologist this morning TLO proclaimed to the staff ‘ I’m here, let the games begin!’ Of course his ‘proclamation’ was greeted with a big smile by the staff as he sat down in the waiting room waiting for his time in the radiation ‘whirlybird!’  We are trying to find as much humor as possible as we can during this trying time. 

The current plan of radiation treatment is focused on the tumor which is located in the cervical part of the spine. This is the area where TLO is experiencing the most amount of pain and discomfort. Because of its location, this is the tumor that is of the greatest concern.    The last two nights at home have been difficult for him.  The pain across his back makes it difficult for him to lay down comfortably in bed, sometimes the recliner is the most comfortable spot for him.  The most important part of this process is to alleviate as much of his pain  as possible.  So, where ever he feels is the most comfortable spot for him, I’m all for it!

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Our New Curtains 

After yesterday’s treatment, we went for an ice coffee and found ourselves in a department store looking at curtains of all things.  I can’t remember the last time we were even in a department store!  TLO wanted new curtains for the dining room, ‘why not’ I said!   In between his naps yesterday, I hung the curtains which lead to a conversation this morning prior to our departure for today’s treatment.  ‘Thanks for agreeing on the curtains, don’t you think they are beautiful,’ TLO said.  ‘Of course they are because you picked them out,’ I said with a smile. ‘It’s important to have things that you want, isn’t,’ he said? ‘Of course so,’ I replied. ‘If there is anything you want, I will do my best to get it for you!’

Nothinggoesaway As we have progressed through the first few days of the radiation treatment, we know that we are just starting to scratch the surface to our emotions, our fears, and our determination.  Today’s session has taken quite a bit out of TLO as evident by how terrible he is feeling this afternoon.  We know that Cancer is an unwelcome guest in our home, but this unwelcome guest has brought with it the ability for us to draw closer, to dig deeper into the surface of our emotions and fears, while strengthening  our determination.    I guess there is something to learn from an unwelcome guest!

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

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What’s On Your Refrigerator?


The Giving Of Love Is An Education In Itself…  Eleanor Roosevelt 

 I was thinking about that television commercial which constantly asks ‘What’s In Your Wallet’ and how catchy their marketing theme is.  I instantly think of Capital One when I hear that phrase…’What’s In Your Wallet’.  We keep most of our important identification and credit cards in our wallet; I think carrying important identification and credit cards in a wallet a common trait for everyone.

As we move into the second phase of palliative radiation treatments, and while engaging our new friends with Hospice Of Broward County, it occurred to me that we are going to have a number of ‘new friends’ visiting us in our home.  It is going to be important for these new friends to have quick access to our important documents which include TLO’s current meds and medication history, doctor information, health care directives, DNR, Durable Power of Attorney.  That is why I put (some of) these  important documents on our refrigerator in our File For Life folder for easy access!  We even spiced our file up with a little New Orléans!

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 While I am a big proponent of electronic media and databases, we also have to be mindful that sometimes networks and computers crash.  When you need your most important documents at a moments notice, the last thing you need is a failed hard drive or jump drive to add to the stress.  In my opinion, there is nothing that replaces the hard copy of your important documents.

The key to having a hard copy of these documents is to know where they are at a moments notice.  When you are in the midst of an emergency, the last thing that you want to have to think about is..‘where are those documents!  Additionally, you want emergency personnel to have quick access to these documents.   In our File For Life, I have a spreadsheet of TLO’s current meds, Doctor’s / Hospice contact information, Diagnosis, DNR and my contact information.  I also indicate in our File For Life, where the larger documents are located, I.e. Power of Attorney, Health Care Proxy, Living Will.

So…’What’s On Your Refrigerator?’

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

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The Call For Hospice


Love And Compassion are necessities, not luxuries. Without them humanity cannot survive.   Dalai Lama

Hospice-1

As we move into the second phase of palliative radiation treatment for TLO, it was important for both of us to bring in our ‘friends’ from Hospice of Broward County to help us in this journey.  The Hospice team arrived promptly at our home on Friday, thoroughly explained the process to both of us, it was peaceful as  we signed on the dotted line.

I used the word ‘friends at Hospice’ because that is what they are, they’re our friends.  We welcome friends into our home and we cherish the time that our friends come and visit with us. We look at these new friends and thank them for being a part of this journey with us.

We are also cognizant and want to recognize our ‘old’ friends too.  Sometimes when the word Hospice is used, there is that utter silence or that blank stare …that sense of ‘what do I say next’ …know that we understand that for some, the hospice conversation might be difficult.  That’s OK too! Because…

Sometimes

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Just being there is all that is needed! 

 windingroad We don’t know what the road ahead looks like for us. Sure, there will be a few swift curves, some winding roads and a missed turn or two.  Yet it will be all of our friends who will help celebrate this journey with us.  We’re realistic, but encouraged: We’re scared, but courageous.  We know we cannot do this alone. We’re thankful for all our friends and we are respectful of your comfort zone too.  Your thoughts, prayers, phone calls, e-mails, words or encouragement are most appreciated.  Because you have remember…

 We Might Have Cancer, But Cancer Does Not Have Us! 

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Never Alone


That Which Does Not Kill Us, Makes Us Stronger.                         Fredrich Nietzche

As we move into the second week with the news of the cancer spreading to TLO’s spine, we are grateful for all the wonderful words of encouragement, the expression of love, along with the care and concern shown to us.  Yes, the news hit us hard last week, yet each day we have gotten stronger because of so many of you who have reached out to us. We are grateful for your attention; it is important for us to know that we are Never Alone.

This past Thursday we had our initial consultation with the radiation oncologist; our next scheduled visit with the radiation oncologist is on Tuesday of this coming week.  With three tumors on his spine located in the Document1Cervical, Thoracic, and Lumbar region, the radiation oncologist is going to be aggressive with his treatment plan, yet cautious because of the location of the tumors.  The visit on Tuesday will determine if the radiation oncologist will be able to ‘shoot’ one or two tumors at the same time.  We are anticipating 14 to 21 days of radiation.

As the week has moved on, we have both adjusted to the difficult news, and what lies ahead of us.  A good friend of mine asked me this past week, “what is the time frame that the Doctor gave you?”  Knowing what he insinuated, I reminded him that two years ago the oncologist told me that ‘TLO’ had “three, maybe four months to live.”  Now two years past that original diagnosis, we have learned to take predictions in stride and deal solely with reality.  We have cancer, we know it is serious, each day is a gift.  We have run with this philosophy for the past two years, there is no reason to change it now.

The reality of the diagnosis has allowed us to have some very meaningful conversations between the two of us.  One of the conversations we had this week centered on the need to have a consultation with Hospice.  We look at Hospice in a positive sense, not a death sentence.  Hospice is not a place where you go to die, but rather a wonderful program that celebrates life. 1185347_10200667183346858_491171639_nHospice does not shorten lives, Hospice helps people live as pain-free as possible.  What Hospice does help accomplish is the facilitation of the natural course of life.  Hospice is inclusive of the entire family, bringing care and comfort to all involved.  The sooner Hospice in engaging in the process, the better the experience will be for everyone.

As Caregivers, we often get caught up in the mindset that we can do this alone.  I think that is even more so for LGBT couples who fear discrimination and bigotry.  It is one thing to experience this feeling in a public setting, unbearable to have someone bring those feelings into your own home.  We both have previous experience of waiting too long to call for assistance.  As we move forward with his palliative radiation treatments, it only makes sense to have this added benefit with us.

As the week has moved on, TLO has regained some strength and continues to try to be as independent as possible.  When I look at him, I am frustrated because I cannot see what I know is inside of him.  We had a trip to the grocery store, he has been out to lunch and to dinner, and he is chatting on the phone with friends.  What is so different about today from last week? TheID-10079215 only difference is that we now know what has caused his pain, now we have to respond to it.  In a sense, the diagnosis is a blessing because now we know what we are up against and can have a plan of attack.  We move forward with the same vigor, hope, and reality that we did two years ago.

We learned two years ago from the original diagnosis that we cannot predict the future. We have also learned this past week that are Never Alone!

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

027Mardi Gras 2013 

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Filed under Cancer, cancer treatments, Hospice, LGBT Caregiving, oncology

‘Be A Healthy Caregiver’ on Blog Talk Radio


On Tuesday January 8th,  we welcome Dr. Richard Wagner, M.Div., Ph.D., ACS to our show Be A Healthy Caregiver!  Out of Seattle, WA., Dr. Wagner is a psychotherapist/clinical sexologist and has been in private practice since 1981.

Dr. Wagner has been working with the terminally ill, chronically ill elder and dying people in hospitals, hospice and home settings for over thirty years.

We will be chatting about Dr. Wagner’s work and his book The Amateur’s Guide to Death and Dying: enhancing the End of Life.  As Caregivers, we are often dealing with issues surrounding life and death.  Our conversation will be upbeat, real and with a touch of spirituality.

To learn more about Dr. Wagner, click here.

To purchase Dr. Wagner’s books, click here.

To Listen to  Dr. Wagner on ‘Be A Healthy Caregiver’ on  Blog Talk Radio click here

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Our show is available live or archived online for your convenience.

To access all our ‘Be A Healthy Caregiver’ episodes on blogtalkradiologo

Simply click here

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