Tag Archives: TLO

A Birthday Gift: Introducing TLO Travel and Tours.


Wherever you go, go with all your heart. Confucius

Richard would have celebrated  his 86th birthday today, (January 24th) and I think it is fitting to formally announce my new endeavor in his honor, TLO Travel and Tours!  For those who have been reading my blog since Richard was diagnosed with esophageal cancer will know that TLO was the fun-loving acronym I used in my blog posts to describe him when writing about our caregiving journey.  TLO simply means, “The Little One” …remember, Richard stood a foot shorter than me!   Richard loved to be called TLO, and Richard loved to travel.

wp-1454002775318.jpgAs I continue to advocate for family caregivers and for those like myself, whose caregiving journey has ended, I wanted to find an opportunity that celebrates our love, care and commitment in all shapes and forms in a way that is unique.   During our eleven years together, we spent time cruising in Europe and traveling by car and plane throughout our beautiful country.  TLO Travel and Tours is not only dedicated to Richard, but to all current, past and future caregivers and their caree’s. Traveling with your caree may not be as impossible as you might think.

I can imagine that many of my caregiving friends are thinking…”Travel with my caree…how can I do that?”  Well, let me tell you about a wonderful proAccessable travelgram called Special Needs At Sea.  I learned about Special Needs at Sea when Richard and I were booking a cruise in January of 2014. Special Needs At Sea can provide you will just about any durable medical product, from oxygen to a hoyer lift and most importantly, a scooter to help make transportation easy on any cruise ship for your caree.  Special Needs At Sea can deliver the product to your stateroom, your hotel room and even your home.  Special Needs At Sea is located in Fort Lauderdale and available in over 150 ports world-wide.  As a certified Accessible Travel Advocate, I can help arrange all your durable medical equipment needs with our friends at Special Needs At Sea.

What’s ahead for TLO Travel and Tours?  We have group cruises on the horizon, four international train tours planned through 2020 including, The Canadian Rockies, Italy, the United Kingdom, and a very special Passion Play tour in 2020.  Through my association with Travel Planners International, I have access to all the best rates for land, air and sea travel that you would see on any travel website.   As we grow into the travel business, TLO Travel and Tours will focus on group tours for current and former family caregivers, retreats to re-energize, while engaging organizations to bring their conferences and workshops aboard a cruise ship or a retreat center.

TLO Travel and Tours is pleased to announce our association with Hope Love Company. Hope Loves Company (HLC) is the only non-profit in the U.S. with the mission of providing educational and emotional support to children and young adults who had or have a loved one battl2017-01-23ing Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s. TLO Travel and Tours is the preferred Travel Company of Hope Loves Company as this wonderful organization travels to Iceland in the summer of 2017 for a terrific international camp for kids who care for their parents with ALS.  To learn more about Hope Loves Company, be sure to visit their website Hope Loves Company (HLC)  and listen to my podcast with Jodi O’Donnell-Ames, Executive Director of Hope Loves Company.   [/audio

Richard and I were fortunate to not only spend 11  wonderful years together., but to spend quite a bit of time traveling as well.  Whether it was sporting our Bow Ties on a formal night on our cruise, dining in the French Alps, or just hanging out together, we always found something to do together.  Making travel easy for those we love and care for is possible.

 This is an exciting time for me as I continue to grow my Whole Care Network brand with new radio shows, individual and corporate training events and now travel and tours.  Our new TLO Travel and Tours website is now live, but still in the development stages.  You can visit the travel website by simply clicking here!

When caregiving ends, its not surprising that we find our self lost and picking up the pieces of a life that was left behind.   That has been me for quite some.  I started to turn the corner with my grief about six months ago which means, I don’t miss him any less, I can now be present to myself and move on with my head held high.  Now, my next challenge is to step outside my comfort zone and get back to things that I am passionate about…travel and advocacy equals passion for me!

Welcome to TLO Travel and Tours, part of the Whole Care Network!  Feel free to contact me direct at chris@tlotravelandtours.com

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Everlasting Love: TLO Is At Rest And At Peace


Love is the beauty of the soul ~ Saint Augustine

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

Sophia Looking Gay

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

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

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

The comfort and love I have felt from family and friends over the past week has been heartfelt.  May it continue. While on this Caregiving journey, so many people have touched our lives along they way.  I am so Caregiving_Logo_Small1grateful for all   your words of encouragement. Denise Brown from Caregiving.com and her vast network of Caregivers who have been our extended family during our journey, are friends for life.  Even in the midst of the intensity of daily Caregiving, Denise and our extended family have been there at a moment’s notice to extend comfort.  Word’s can’t describe how wonderful TLO’s primary care physician, Dr. Milica Starcevic of Broward Health, has been to us during our time in her care.   Dr. Starcevic’s genuine care and concern for us will always have a special place in my heart.  It goes without saying how wonderful the entire staff at Gold Coast Hospice treated us as well.  The word that comes directly to mind when thinking about the staff at Gold Coast Hospice is ‘authentic.’  There was not one staff member who walked into our room who was not authentic in their care for both of us.  Like ministry, working in Hospice is a special calling, not everyone can do it, but the staff that we met from the administrator down, was just splendid.  We never had a worry or concern, the entire Hospice staff honored us and our relationship.

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

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

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

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

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

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The Caregiving Yo Yo


You Can Never Plan The Future By The Past ~ Edmund Burke

YoYoHow many of you liked to play with a Yo Yo when you were a kid?  I would guess that just about everyone has taken their turn, spinning their Yo Yo up and down, controlling the string, holding steady, flipping the device backwards to impress.  As I have thought about how our Caregiving journey has begun in 2014, I see a resemblance to that of a Yo Yo:  Up and down, backwards and forwards, spinning all around.  Unlike a Yo Yo, Caregivers have little, if any control over their Caree’s, health which makes for so much uncertainty when you try to plan ahead.

TLOAust

TLO, Friday, Jan 3, 2014

 TLO finished 2013 with a bout of congestive heart failure that kept us from traveling to Florida‘s west coast to visit his family.  I could tell leading up to the day we were supposed to leave for Tampa that something different was brewing with his health which necessitated an unplanned trip to his PCP.  With a few days of additional diuretics, and a new 6 day steroid pack, TLO was feeling great as we moved into 2014.

Mindful that we have now had two trips derailed by unexpected health calamities late in 2013, we set our sights on going on a weeklong cruise starting on Saturday, January 11th.  Our travel plans for January 11th ended up being derailed again by another unexpected health calamity. Unable to get out of bed the day before the cruise, and the following two days after the cruise sailed, necessitated an emergency call to his PCP, then followed by another unplanned visit to the doctor’s office.  The consensus was that it was unsafe for him to go on the cruise; disappointment does not accurately describe how we both felt when I had to make the call to cancel the cruise. (Yes, I did purchase the insurance!)

TLO Nose

TLO Jan 14th

 With an uncontrollable nose bleed, only exceeded by excruciating back and leg pain  necessitated TLO to stay in bed for 3 days; there was sheer puzzlement about what was going on with his body.  The pain he was experiencing was different, the nose bleed was troubling, and the concern was mounting.  His current pain medications were not providing any relief, “What’s going on here” we both thought!  The relief started to slowly take place on Tuesday after an injection administered by his PCP and a new round of steroids which started the following day.  However, during the visit with the PCP, the concern is that the Cancer has spread to the bones in his hip and leg; we’ll know more after TLO completes another MRI.  As the week progressed, TLO admitted that he had been fearful of dying because of the intensity of his pain and discomfort.

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First Time use of Motor Cart

Thankfully, just a few days after the injection and a new round of steroids in his system, we were able to get TLO out of the house for a trial run.  As the week progressed, the nose bleed disappeared and his pain is at a manageable level.  “I wish I would have felt like this on the day we were supposed to leave for the cruise,” TLO said just last night.  ‘I would have wished that, too’ I concurred.

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Whatever happens: Happens

While it may seem easy for some of us to control a Yo Yo by keeping it steady and close to the ground; Caregivers are always rewinding, trying to avoid that uncontrollable spin, looking for that gentle ‘touch’ that will keep our paths steady.   That is why I like what Edmond Burke had to say…“You can never plan the future by the past.”  If we were to look solely on what was in the past, we would lose hope.  Hope is one of those intangible items that makes those difficult Caregiving days plausible. Without hope, there is no planning, no future, no means of survival.  Hope brings anticipation, hope brings comfort, hope brings the excitement… Hope is what keeps us going!

TLO Rest

TLO Friday, Jan 17

We all know our health is unpredictable.  Sure, there are plenty people like ‘TLO’ who have similar  health concerns in front of them, but to take away one’s hope is like removing medicine.  Without hope, there is no future; without a plan, there is no hope!  Yes, we are going to plan another trip soon and when the day arrives for us to leave, we hope that we will be well enough to go.   While I’m mindful of the past, I can’t worry about it  because by worrying about the past, takes away the hope that we create. Once we lose our hope, we have let the cancer beat us.  Because, 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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 My Show, ‘Be A Healthy Caregiver’ is on Hiatus while TLO is going through Radiation Treatment, we will be back on the air in December!

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

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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 Drapes

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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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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The Future is Now


“No one wants to die. Even people who want to go to heaven don’t want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life. It is Life’s change agent. It clears out the old to make way for the new. Your time is limited, so don’t waste it living someone Else’s life. Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.” – Steve Jobs

As I pondered this quote from the late Steve Jobs, I took quite a bit of solace and inspiration from it.  As a caregiver, you freely give your life to someone else while being mindful of your own individuality and needs.    As The Little One heads into his final four days of radiation treatments, our lives are changing before our eyes.   We can’t predict the future, we can only deal with the present.   We intend to live our lives to the fullest and enjoy each and every day we have.

The key here is not to wait until there is a serious illness to have this revelation.  We have been fortunate to have followed our heart and intuition since we became friends.   While our life is different because of the  illness, the illness will not control our lives.

While completing my internship in Hospice a few years ago, I was often observed families who were trying to resolve life long issues at the ’11th’ hour.  We all know that is an impossible task, yet understandable under the circumstances.   We can’t fix the past, yet we should not live in it either.    We can live today and search for tomorrow; that is what life and hope is all about.   Or as Steve Job’s put it…”Don’t be trapped by dogma — which is living with the results of other people’s thinking. Don’t let the noise of others’ opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become. Everything else is secondary.”

 

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A Trip to the Hospital


The phone rang and there was a trembling voice on the other end…”They are admitting me to the hospital”  The Little One said.  It was not difficult to hear the fear and anxiety in his voice; the psychological aspects of going through chemo and radiation are often overshadowed while in the mist of the treatments.   Even more unbelievable…his doctor wheeled him to the hospital emergency room herself! 

While no one really relishes a trip to the hospital, this was the best way for ‘The Little One’ to help regain his strength and take a break from the cancer treatments.  The chemotherapy and radiation has zapped his strength;  low white blood cell count and low potassium levels seem to be the culprit in this sordid mess.     All fixable items on the health dept chart when recognized early and treated properly.   We are thankful for the chemo-therapist for his swift action and recognizing that was something amiss.

Try as we might, we just can no longer do these treatments apart.  Independent as he is, these treatments are just not something that you can do on your own.   The issues are enormous;   house and doctors in Florida, job and family in St. Louis.  Yet one thing is certain…home is always where you are when you are with the one you love.

Last Saturday I met with a wonderful geriatric social worker in St. Louis by the name of Jeanette.  The hour I spent with Jeanette was worth its weight in gold.  One of the great lessons that I was reminded of during my visit last week with Jeanette is the need to network and explore expertise other than your own.  (Now is not the time to be a legend  in your own mind.)  There are more options available than meets the eye, it’s just getting to the right resources in time to make the proper decisions.  I am thankful for her knowledge and thankful to Sherrill Wayland from Metro SAGE St. Louis for the great referral.

As I have previoiusly mentioned, being a caregiver is a privileged…Yet in order to be a good caregiver you have to sometimes detach your emotions and explore knowledge and resources outside your area of expertise.  There is no need for the caregiver to go solo!  My visit with Jeannette reminded me that in order to think outside the box, I have to get out of my own world.

As we move into the final stages of the chemotherapy and radiation treatments, we are doing this together…side by side, one by one.  Now that I am in Florida, one decision is firm…’The Little One’ will no longer be ‘physically’ alone to go through these daunting treatments.  We look ahead with hope, with anticipation and most of all…with all your love, prayers and support!

 

 

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Preparation


The PET scan is scheduled for 9:30 am this morning. We are anxious to have the procedure completed as the results will determine the course of action for the treatments.

Soon, the unknown will be right before our eyes. There is a comfort that lies beneath the results, as it is always better to deal with the known.

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