Tag Archives: The Bow-Tie-Guy

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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Thursday’s 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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‘”Be A Healthy Caregiver” is on hiatus while “TLO” is undergoing radiation treatments.  We plan on being back on the Air in December!

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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The Foundation: The Honor Of Caregiving.


I have looked into your eyes with my eyes.  I have put my heart near your heart. Pope John XXIII

This Friday I will be presenting on Caregiving at SunServe’s Silver Serve Luncheon.   I’ve taken most of what I have written below from previous blog post on ‘The Purple Jacket’.  Your feedback is always welcomed! 

The Foundation: The Honor Of Caregiving

To be entrusted with the care of another human being is one of the greatest honors that can be bestowed on you.  Caregiving takes on meaning that is beyond reproach.  New parents have nine months to prepare for the responsibility of bringing a child into the world.  Doctors and nurses undergo years of rigorous training for the work that they do.   But CaregiversDavid Allen can find themselves thrust suddenly into roles, roles that they often do not choose, when called to care for a spouse, partner or loved one after a diagnosis or accident.

At a moment’s notice you become a Caregiver, without any warning, with any training, without any time to think things through.  You feel like you have no idea of what you are supposed to do, so you do your best as you follow your instincts and common sense.  You embrace the new reality…You simply care for the one you love.

When you become a Caregiver for your spouse, partner, significant other,   a new and uncharted realm opens up.  Two distinct relationships must now be blended into one.   The familiar partner from the past remains and is always present. But now there is someone different on the scene – someone with a significant illness.

Suddenly, two people sharing a life together will face challenges that cannot  be left unattended?  A whole set of new and intense emotions are likely to intrude on the relationship.  Worry, detachment, mortality, anger, fear of abandonment and having to live life alone,  begin to intertwine with the idiosyncrasies of your personal dynamics.  These gut wrenching emotions can lurk in a caregiver’s mind when faced with a life-and-relationship-altering illness with your life partner.

Caregiving is an intense experience that asks you to surrender yourself to the needs of someone else.  Often times, you have to give up things that you love, in order to care for the one you love.  Even though it might feel like a hardship, you make the choice, you make the choice because you know that it is what love and commitment is all about.  Yet it is not that simple, because Caregiving can be an emotional, physical, and interpersonal roller coaster that is both tremendously rewarding and frustrating.   These emotions can surely test even the best communication and trust in a relationship.

The common denominator when blending a life partnership with Caregiving is communication.

Successful relationships are built on strong communication and trust.  It is throughcaring hands honest communication that the true essence of a life partnership is revealed.  This does not change when you add the role of Caregiver to the mix.  Communication has to be the focal point for conveying the wants and needs of the one who is ill. This must be accomplished without losing one individuality, the life partnership, or the role of the Caregiver.  The term “delicate balance” takes on a whole new meaning

Frequent review and maintenance of clarity in your roles becomes crucial so that our judgment and decision-making skills are based on sound facts instead of raw emotions.  How much can the mind and body take when faced with so many changes in such period of time? I think that really depends on the couple’s ability to safely, clearly and honestly communicate their wants, needs and desires as indicated by the partners health needs first and the relationship second.

While I have no doubt that caring for your life partner will strengthen a relationship, Caregiving will change a relationship too!  It is not uncommon to see someone who has been firmly independent, become dependent in certain areas of life that have been difficult for them to accept. Stepping outside one’s comfort zone and asking for assistance with mundane everyday chores adds stress to both parties…That is undeniable!

Caregivers often become the voice for the one who is ill.  As Caregivers, we have to be mindful that we are in a supporting role.  First and foremost, Caregivers are advocates.   In our role as an advocate, we must remember that what we may want for our loved one may not necessarily be what the love on wants. What a slippery slope this becomes when caring for your life partner!

Life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our back. This gentle wind is always fortified by love, trust, commitment and communication.

…My your hills be always be slight and with a gentle wind at your back.

The Purple Jacket©

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Thursday are always ‘Hug A Caregiver Day!’


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

thursdays

Listen to: 

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Tuesday’s  at 1:00 pm (EST) and Thursday’s at 8:00 pm!

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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Filed under Caregiving, The Purple Jacket

Thursday are always ‘Hug A Caregiver Day!’


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

thursdays

Listen to: 

cjmbtr (1)

Tuesday’s  at 1:00 pm (EST) and Thursday’s at 8:00 pm!

Can’t listen live…NO WORRIES!

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

Leave a comment

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Hug A Caregiver Day!


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

thursdays

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! 

Leave a comment

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The Financial Struggles of Caregiving


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On Tuesday, October 1st at 1pm (est), I am pleased to welcome Nate Purpura, from eHealth, Inc.   To listen to our show live, simply click here! 

There is an estimated 44 million working family Caregivers in the United States today. Recent studies also indicate that due to time off of work, Caregivers can expect to lose wages totaling over $140,000!  According to eHealth Insurance, about one-third of adults who provide unpaid care for their elderly parents say they’ll have to use their own retirement savings to help their parents financially.

EHealth Medicare

Our guest, Nate Purpura, is the Director of Public Relations for eHealthmedicare.com and eHealthinsurance.com – division of eHealth, Inc has spent the last decade working in the health care and insurance industries. Nate’s area of focus have included everything from pharmaceuticals, health and wellness and chronic disease management programs to cutting diagnostic tools, insurance products, including Medicare, and internet-based “exchanges” or  marketplaces.

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Having a grasp of finances is a critical component to Caregiving, but at times, an area that can be left unattended.  Through our conversation with Nate, we will learn why Caregivers often struggle with finances, along with gaining some helpful tips make this area of our Caregiving journey less stressful so that we can all ‘Be A Healthy Caregiver!’

To listen to our show live, simply click here! 

To Visit eHealth online:

Homepage: http://www.ehealthmedicare.com/ 

Blog: http://blog.ehealthmedicare.com/ 

Facebook: https://www.facebook.com/ehealthmedicare 

Google+: https://plus.google.com/108383927295539973030/posts  

Twitter: https://twitter.com/ehealthmedicare

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Hug A Caregiver Day!


Caregiving can sometimes be hard:

But Hugging a Caregiver is easy!

thursdays

Listen to: 

cjmbtr (1)

Tuesday’s  at 1:00 pm (EST) and Thursday’s at 8:00 pm!

Can’t listen live…NO WORRIES!

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

Leave a comment

Filed under Caregiving, The Purple Jacket

Join Us On Our Caregiving Cruise


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We’re less than 60 days away from our Caregiving Cruise and we’d love for you to join us.

We’re partnering with Denise Brown from Caregiving.com  and Jerry Dismarias from  Cruise, Inc on our first and annual Caregiving Cruise!

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We set sail on Monday, November 11 for a four-day cruise on Norwegian Cruise Line’s Norwegian Sky. We leave from Miami and then head for three stops in the Bahamas before returning to Miami on  Tuesday, November 14. 

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The Purple Jacket!

In addition to special pricing for our cruise,  you receive a $25 onboard credit which can be used toward excursions, drinks and gift shop purchases. The cost of the four-day cruise, which includes your accommodations, meals and our workshops, begins at $345 per person for an ocean view stateroom.  I am hoping to get into the famous Purple Jacket at our Cocktail reception!

 

You can book your Caregiving cruise vacation here.  

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If you’d like, please feel free to bring your caree on our cruise. Our travel agent, Jerry Dismarias,  can assist with your special needs.  You can call Jerry direct at 877-632-5301 Traveling alone? No worries! Jerry can help you find you a roommate.

Our travel agent also can help arrange your airfare and transportation to our cruise. Because we understand that a Caregiving situation could mean a last-minute crisis, Jerry can tell you about travel insurance.

If you book your cruise before September 25th, Denise Brown from Caregiving.com will provide  one-year membership to CareGiving.com (a $49.95 value) so you can receive support before and after your cruise.  By joining  CareGiving.com, you’ll be able join our Caregiving Cruise group to talk about your plans for the cruise. We also share updates and details in the group about what we’re doing to make this cruise one to remember.

Book your Caregiving cruise vacation here.

No, this isn’t me or Denise, . But they sure look happy frolicking in the ocean in the Bahamas. We will, too!

No, this isn’t me or Denise, but they sure look happy frolicking in the ocean in the Bahamas. We will, too!

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Tuesday on Be A Healthy Caregiver HIV: People Think It’s Over!


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Join me on Tuesday at 1:00 pm (est) for a special conversation with Licensed Clinical Social Worker, Steven Schwabish for a discussion on HIV.   To listen to our show live, simply click here!

Steven has been a Licensed Clinical Social Worker for over 30 years and has been HIV + for 27 of those years.  Recent studies have indicated that new HIV cases are on the rise in the senior community.

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Through is personal and professional experience, Steven has a keen understanding of the effects of this insidious disease.  Steven will lead us in conversation in regards to his diagnosis, his care and how he has been able to survive 27 years with the HIV virus.  Steven will also be able to talk about HIV through the eyes of a clinician who has worked in the trenches with HIV.

 Through our conversation with Steven, we will all learn how to ‘Be A Healthy Caregiver!’  

To listen to our show live, simply click here!

Listen to

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