Tag Archives: advocacy

Advocacy Heals U: Healing Ties of Change


Recently I had the opportunity to be a guest on Joni Aldrich show, “Advocacy Heals U”, which is now featured on iHeart Radio.  Joni is an accomplished author, radio show host, public speaker, but most importantly, Joni has been a caregiver for her husband, Gordon, who like Richard, passed away from Cancer.
22958786 Connecting with Joni has been a pleasure and sure proves that Caregivers, no matter what their journey might be, have this innate ability to understand each other, to be there for each other, to care for each other.  Joni has been that connection for me.   As Joni so eloquently wrote: “Love radiates through this show. Love of a partner for a partner through life, illness and difficult loss. “To love someone is to see the face of God.” Guest: Chris MacLellan, The Bow-Tie-Guy. Chris loved Richard Schiffer through the twists and turns of life and Richard’s end-of-life. Experience IS the most brutal of teachers. But you heal. Chris’s new show, Healing Ties, will discuss 4 aspects interwoven in hope: physical, mental, spiritual, financial. While his focus is on caregivers, the message is much deeper. Why are health care rights connected to marriage rights? In many states, gay couples do not have that option. Love can move mountains, but can it break down walls?”

To listen to our show, simply click here! 

To learn more about Joni Aldrich simply click here!

Approaching six months after Richard’s transition into eternal life, my life continues to transition.  I’ve made the decision to leave my job with Screen Shot 2014-08-21 at 2.30.41 PMSunServe Social Services and start to write our story through my own words.  I’ll be heading over to New Orléans to write, spend time healing and starting my new radio show, ‘Healing Ties’ from ‘The Bow Tie Guy.’  Stay tuned to ‘The Purple Jacket’ for the launch date of my new show which will be featured on W4HC.com and iheart Radio.

Remember:  “Love, Care and Commitment is the same for any two people, no matter what gender.”  Make your day count, never pass up the opportunity to tell your spouse or partner that you love them!

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More Cancer: More Radiation


 If You Are Out To Describe The Truth, Leave Elegance To The Tailor ~ Albert Einstein

The pain has been severe; the long sleepless hours have been agony, but now we know the truth behind the pain, we know the truth that is causing those sleepless days.   More Cancer: More Radiation.

When the MRI results came in on Thursday, our fears became our reality; “It’s good that we know what we are dealing with” I said to TLO; “Yes, as difficult as this news is to hear, it is better to know” TLO responded.  In the back of our minds, we both knew that this was not a case of sciatica.

The cancer has moved to his hip, pelvis and down his right leg.  In order to relieve his pain, we will start palliative radiation treatments immediately.   We are considering a PET scan to determine where else the cancer might be in his body, yet how much more do we really want to know? 

There is comfort in holding each other and having a good cry.

One thing that we have decided is that we are going to enjoy every day FightCancertogether.  We will not let the cancer rule us because as Saint Augustine said,  “Love Is The Beauty Of The Soul.”  

It is at these times when the dual role of Caregiver and Partner intertwine.  The  fate of reality projects our thoughts to a future which has not arrived.  You want the pain to go away; nothing more, nothing less.   Removing the Caregiving role provides for more free time yet losing a partner leaves an emptiness that only makes free time more difficult.

As  Caregivers, we often fail to reach out and ask for help.  Those reasons imagesvary from wanting to do it alone, to not knowing how to ask for help.  With that, family and friends have to have their own comfort zone when asking what they can do to help.  I have been on both sides of this dilemma.   The most important part of this process is to be aware and act within one’s comfort zone.

If you are wondering what you might be able to do, please feel free to: support

  • Call us
  • Write us
  • Text us
  • Visit us
  • Pray for us
  • Do what makes YOU most comfortable

TLO and I understand that we have a difficult road ahead, but that  is OK because we know the truth and we can deal with it accordingly.  The quick response from his primary care physician and radiation oncologist to have his treatment plan set up within 24 hours has simply amazed us.  We are so fortunate to have Dr. Starcevic and Dr. Medina on our Care Team.

It goes without saying how fortunate we are to have each and everyone one of you with us on this journey because…

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

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Thursday’s are always ‘Hug A Caregiver Day’


In 2014 commit yourself to Smile more; Laugh longer; Let Go of Stress! 

Caregiving can sometimes be hard,  but hugging a Caregiver is easy! 

Thursday’s are alwaysHug A Caregiver Day! 

There is an esteemed 60= Million Family Caregiver in the United States today, Find one and give them a Hug!

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Christopher MacLellan, affectionately known as ‘The Bow Tie Guy,  is a family Caregiver and blogs about his Caregiving experience at ‘The Purple Jacket.’  Chris is also the coordinator of Senior Services for SunServe Social Services and the host of his new radio show’ Healing Ties,  starting in late January 2014.

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It’s Never Too Late To Start Over


We may encounter many defeats, but we must not be defeated!~Maya Angelou

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I graduated from radiation treatments!

Our second bout of Cancer started to unfold when we were discharged from Imperial Point Medical Center in early October with the news that TLO’s cancer had entered his spine.   It was a somber drive home that warm Saturday afternoon knowing that three tumors were lurking on his spine;  the added ordeal of facing more radiation just exasperated the diagnosis. Those first few days home after the diagnosis  was quite difficult… For both of us.  I’m still not sure what was worse; the revelation of what was inside of him, or the anticipation of starting the rigorous treatments that were in front of us?

Caregivers know that through all the turmoil, we hope for a ray of light toHoldTight shine through our Caregiving day, to take the edge off so to speak.  Our ray of light happened this week as TLO completed his six weeks of radiation treatments.   Those six weeks were like riding a roller coaster, or maybe one of those amusement rides that spin you upside-down.  (I always hated the ones that went upside-down)  It is hard to get a handle on your day when your day is in constant motion.

Never too LateDuring these last six weeks, there has never been two days alike; Cancer kind of does that, we’ve learned! We wake up each day not knowing how the day will enfold; Cancer kind of does that, we’ve learned! We look back at these past six weeks and wonder, “how did we get through this mess;” Cancer kind of does that, we’ve learned! We really don’t know what lies ahead of us; Cancer kind of does that, We’ve learned!  It’s never too late to start your day over;  Cancer kind of does that, we’ve learned!

Completing radiation treatments is  significant because it allows us to start Certificate side (2)over again.  There are no more treatments, nothing else to do other than to let the healing process start!     Sure, there will be a follow-up  MRI and CT scan to see the results of the radiation.  However, we have no control over what those results will entail.  We can only control how we feel, and how we will deal with those results.  

There is no doubt that this round  radiation has taken its toll on TLO.  For him, dealing with going to radiation on a daily basis is more difficult than dealing with the fact that he has cancer.    I find that revelation difficult to understand, but so thought-provoking!  It’s important to remember that we are wearing different shoes on this journey.

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 As we move into a different phase of our journey, we continue to hope for a gentle breeze at our back.  We’ve done what we could do to combat the tumors, we’ve made the proper adjustments to our care team and we are thankful for the great staff at the South Florida Radiation Oncology in Coconut Creek and Emerald Elite Senior Home Health Care in Wilton Manors .  I’m grateful to the Executive Director at SunServe, Mark Ketcham and my colleagues at work for their support and understanding.  Our extended family at Caregiving.com, where would we be without you?

As a Caregiver, we often think that we can go at it alone, that we don’t need any help.   While we have the ability to start our day over, it makes it easier to start our Caregiving day over when we have passengers to help  guide us through the journey.  I’m thankful for our Care Team!

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

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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! 

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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That’s What Caregivers Do!


Presidential Proclamation — November is National Family Caregivers Month!

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 I am proud to be one of the over 60 million Caregivers in the United States today.  Being a Caregiver can be, and often is challenging… But also so very  rewarding.  I believe that to be entrusted with the care of another human being is one of the greatest honors that can be bestowed on another person.  Those long sleepless nights, those challenging trips to the doctor and hospitals, those times when you have to intercede, educated and advocate come full circle when your Caree looks at you and  simply says…”Thank You for what you do for me.”  

I am also mindful of those family Caregivers who are never thanked, never appreciated and overworked.  If it means anything to you, from one Caregiver to another, I offer my thanks and appreciation to you because… That’s what Caregivers do! 

Caregiving is not a role that is often chosen and Caregiving is not for everyone.  Caregivers come in many different shapes, sizes, philosophies and cultures:  Caregiving and Caregivers are diverse. While our Caregiving  journeys might be different, Caregivers have this innate ability to understand each other,  to care for each other, to be there for each other, because…  That’s What Caregivers do!

Through the wonders of the internet, my Caregiving journey has been enriched by the countless number of people I have met along the way.  Each one of you have inspired me, supported me and have been there for me because… That’s what Caregivers do! 

A special ‘thank you’ to Author, Caregiving Coach, Speaker and owner at Caregiving.com Denise Brown and my extended family at  Caregiving.com  for your support. You opened up your ‘home’ to us and made us feel welcome from the start because…  That’s what Caregivers do!

We know that our current Caregiving journey is going to be filled with a few bumps and bruises along the way; Cancer has a way of doing that.  Yet we know those bumps and bruises will be a tad softer because of our extended Caregiving family we’ve met along the way because…That’s what Caregivers do!.  

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Caregivers: Thank You for all you do from Bernard Richard Schiffer…’The Little One’

To all Caregivers, I share this simple smile from a very special fellow whose courage is unbounded, as a way of thanking you for all that you do, because…That’s what Caregivers do! 

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On Being An Advocate


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

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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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Thursday are always ‘Hug A Caregiver Day!’


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

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Listen to: 

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Tuesday’s  at 1:00 pm (EST)

Can’t listen live…NO WORRIES!

All of our episodes of ‘Be A Healthy Caregiver’ are archived for your listening convenience by clicking here! 

 

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Positive Thoughts Helps Ease The Diagnosis


Today we had our second visit to the radiation oncologist to secure images on TLO’s spine in order to determine the course of action for the upcoming radiation treatments. We were so pleased by the experience we had today because of the care and concern showed to us by the technician who was taking the images.

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Luis was a class act today. He took the time to thoroughly explain to us the procedure, what to expect and when we would know of the results. He listened attentive to our questions and made us both feel at ease. But I think what set the positive tone off was the way he greeted us in the waiting room. He went right over to TLO, extended his hand and introduced himself, then turned to me with the same warm welcome!

His approach was truly an ice breaker!

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Luis’ style today was not only professional and friendly, it was therapeutic! His demeanor today completely put TLO at ease, which has lasted the rest of the day.

“I really feel good today” said TLO after dinner this evening. “Was my cooking that great tonight I asked?” “Don’t kid yourself” he said. “I really came away from our appointment today feeling good about the how I was treated and the whole environment of the office. Luis was so nice to me and listened, that does not always happen in these settings. I am so glad that we are going to this office for treatments, I feel safe, secure and appreciated!”

I agree with him 100%!

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As the night has progressed, TLO is resting comfortably and we are both at peace thanks to Luis’ excellent care today. We don’t look at the future as being bleak, we look at each day as a blessing to share with each other, to care for each other and to be open to the days ahead.

We’ve had our cries; we’ve had our frustration and now we just deal with the reality of what is in front of us. One simple act of kindness by Luis today help alleviate 10 days worth of fear and frustration. Our hats are off to Luis!

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

 

 

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Discharged!


We’ve been discharged from the hospital!

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I’ll be back later today on ‘The Purple Jacket’ with further details.

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Lost Time Is Never Found Again


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Time Is What We Want Most, But What We Used Worst…William Penn

This week we motored to the Eye Doctor for an appointment for TLO.  This was a new doctor added to our portfolio as his previous Eye Doctor was no longer on the TLO’s insurance plan.   Like many caregivers, I ended leaving 

eyecheckwork early in the afternoon to pick up TLO so that we could head west to the appointment.  Twenty minutes from work to home; Twenty minutes from home to the doctor’s office, I guess you can say I was ‘Driving TLO’  (Driving Miss Daisy just did not sound right!)

On our way to the Doctor’s appointment, I got my first indication that this appointment had the potential to be a problem.

  • TLO: “When I made the appointment I asked them to send me the paperwork so I could fill it out and have it ready when we arrive.  I never received the paperwork, so if I do not have any of the information they need, I am going to write on each line, “I’m too old to remember because you did not send me the paperwork ahead of time!”
  • Me:  “How long ago did you make this appointment?”
  • TLO:  “At least six weeks ago and I called them in the mean time to ask them to send me the paperwork”
  • Me: “So you made two request for the paperwork”
  • TLO “Yes!”
  • “Oh Boy” I thought to myself…”This is going to be a long afternoon”

 We promptly arrived 15 minutes ahead of schedule and TLO started to fill out his paperwork.  Surprised that he did not say something to the receptionist about not being mailed the paperwork prior to the appointment, he took pen to paper and started to fill out the requested information.  (Of course, they took his Co pay first!)  As I peeked over to see what how he was doing with the paper work, I noticed a few long answers which started…”I’m too old to remember”… I chuckled, but made sure he was not missing any critical information that the doctor or staff needed which was important to his care.

While completing the paperwork we sat in what I thought was a waiting room, which was empty.  “We are going to move through this appointment quickly I thought.”  WRONG!  45 minutes later the receptionist called us and pointed us down the hallway to a second waiting area.  We were shocked to find 12 people in this waiting room to see the ‘tech’ then the doctor’.  Another 45 minutes, and finally he is called in for his eye exam, which took all of about 15 minutes.

While watching the other patients in the waiting room, I was trying to determine how people were being called in for their exam.  There seemed to be no rhyme or reason as patients who were there before us, were called after us.  You know that is the case when you get the evil eye from someone sitting across the room from you when your name is called, and their name is not.  I could see the nurses, tech support, receptionist all fluttering around the office, but no one taking charge.  Patients sitting there getting frustrated: receptionists with their glass window closed.

Soon TLO returned with the nurse who said…“Take a seat, Mr Schiffer the doctor will see you soon!’  I said to him, ‘What’s up, did you not see the doctor’…’no’ he replied, ‘they just did the test, they will call us again to review with the doctor.’

Oh boy, more delay’s, there is just so much daytime TV one can take; How do people watch those judge shows?

Time continues to drag on, and on and on… now we’re past two hours waitingeye rolling in this office, (as were many of the other patients) and we’re both started to get frustrated.  One of the nurses approaches us wanting to know his primary care doctor and his previous eye doctor. “All that information is on the paperwork, what seems to be the problem” we said in unison. (Yes, he did put that info on the paperwork!)  ‘Oh, we’re just waiting on the referral’ the doctor will not see you without the referral.  YIKES!

One of the great things about TLO is that he follows up with his Primary Care Physician on a regular basis when there is a need for a referral.  He confirmed weeks prior to the appointment that the referral had been sent by his PCP.

Before I could even get to the receptionist to straighten out this mess, TLO had beaten me to the punch.  Let us just say that we have two very diverse ways in handling conflict.  I will let your imagination  run wild about his loud and direct conversation with the receptionist!

thumbsdownTwo and a half hours into our extended stay at the Eye Doctor’s office, we finally just left. 

We have reported the Eye Doctor to our Primary Care Physician so that they do not make any more referrals to that office.  Knowing that they have the needed referral, we have also reported the Eye Doctor to our insurance company because we are both confident that they will bill for the appointment.

Time is a precious commodity. Too often time waiting in doctors’ offices is wasted by inefficiency of the staff; we have all experienced it.  But how do we combat it?

  • Always tell the doctor about your positive and/or negative experience with staff or office procedures, often doctors are the last ones to know.  It is their reputation!
  • Always tell the referring physician about a positive/negative experience with a referral they  have made.
  • When going to a new doctor, always ask for the paperwork in advance of the appointment to help expedite the wait time.
  •  Inform your insurance provider of a problem with a referral
  • Always double-check with your PCP to make sure that the referral has been made.

 I would love to hear what you do to combat wasted time at the doctor’s office!

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

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