Category Archives: TLO

Day By Day: Grieving and Healing


Experience: that most brutal of teachers. But you learn, my God do you learn.  C. S. Lewis.

Finding the energy to blog on The Purple Jacket has been difficult for me these past few months.  Let’s face it, grieving can be a full-time ‘job’ which takes quite a bit of energy.  But grieving can be healthy too.  Today I experienced a form or healthy grieving by visiting  Gold Coast Hospice where Richard made his life transition, to say hello to the staff and present them with gift as a token of my appreciation for the kindness and love that was demonstrated to us while we were both under their care. This visit had been planned in advance and while I was unsure of what my initial reaction would be, I knew that the staff would greet me warmly.

Kermit  As I approached the Hospice unit, I was struck by the utter calmness that suddenly came upon me.  My eyes immediately looked to the right as I entered the ward as Richard’s room was the first room on the right side entering the unit.  As I walked past and looked in the room through the crack of the door, it seemed fitting that today, this room was vacant.  Suddenly I heard, “He’s here” from the  Hospice nurse who came to the house to admit Richard to the unit in March. I knew right then and there that this was going to be the right thing for me to do today!

Hugs, well wishes, great conversation and tears followed as we greeted each other and shared stories. Fittingly, we moved into ‘that room’ for my formal ‘Thank You’ to the staff.   “As a part of my healing process, it was important for me to come here today to say hello, and to say ‘Thank You’ for allowing us to spend our last days together.”  In the six days that we were in the hospice unit, there was not one time were I did not feel welcomed, all we felt during our Flowersstay was love…I wanted to return the favor!

“It is important for me to present you with a copy of a pictorial book which was given to me by the two great journalist from the Sun-Sentinel who followed us on our final journey together and wrote our story, “In Sickness and In Health: A Couple’s Final Journey” which was published in April.”  More tears, more laughter, more love!  And yes, I think it is possible to cry and be calm at the same time.

There are many books written on grieving, yet one thing is certain; grieving is an individual process that is unique to each one of us.  In order for me to continue in the healing process, it was important for me to reach out and make this journey to the Hospice unit.  You see, the pictorial book that was provided to me by Diane and Carline from the Sun-Sentinel is the best book on (my) grieving that I have  read.  I am fortunate to have such a wonderful, life-long gifts of this book, and the article in the Sun-Sentinel. By sharing the book with the Hospice staff, and subsequently, other families who come to the unit, was my way of giving back, saying thanks and continuing my grieving and healing process.

Life is much different now.  There are more challenges ahead, yet in order to take on these challenges, I have to find a way to soften what has transpired.  There is no easy way around grieving, it is important for me, in my grieving process, to  simply just ‘own it.’   Today helped soften the anguish of missing him: May your grieving process be filled with  few hills and always, a gentle breeze at your back.

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Our Follow-Up Story. Life after death: Couple’s story sparks change


Cartier gold-rimmed aviator bifocals, classic disco era. A pair of immaculate, brilliant-green Florsheim slipons, men’s size 7, worn once yearly — on St. Patrick’s Day — for more than three decades. Bathrobes still hanging on a hook.

It’s taken Chris MacLellan about three months to prepare himself for this moment, the sorting through of everything that his partner, Bernard Richard Schiffer, left behind when he died March 9 of esophageal cancer at age 83.

There are the memories, unresolved feelings of loss and a sense of emptiness in the Deerfield Beach home they’d shared for 11 years.

There are the surprises, like the handwritten note tucked inside one of Schiffer’s alphabetized address books: “To love someone is to see the face of God.”

“I think Richard intended me to find the note. I think he left it for me,” said MacLellan, 57.

And there’s the legacy. The couple had agreed to let the Sun Sentinel chronicle their final months together in hopes of bringing awareness to the special challenges that lesbian and gay seniors face at the end of life. Since their story, “In Sickness and In Health, ran April 13, MacLellan has been overwhelmed by the response.

MacLellan has seen everything from letters of support or condolence to health care institutions pledging policy revisions.

Many who read the couple’s story expressed surprise that health care rights are so connected with marriage rights. Some gay couples said they are now considering marrying, even though they live in states like Florida that do not recognize such unions.

“I appreciate the people who have reached out, the kindness. It’s hard to believe that two ordinary people, who lived in a little house in Deerfield Beach, could make such an impact,” said MacLellan, who works as senior services coordinator for SunServe, a lesbian, gay, bisexual, transgender and questioning social service agency in Wilton Manors.

‘Who are you?’

In the story, MacLellan described rushing Schiffer to Broward Health North’s emergency room in September and being ignored by intake staff while they questioned his partner.

“When we first got to the ER, [the medical staff] paid 100 percent attention to Richard and didn’t really acknowledge my presence,” MacLellan said at the time. “When I tried to speak up, and give them more of the full story about what was happening, they said, ‘Who are you?'”

With Broward Health Staff

Speaking to upper level management at Broward Health North. Photos: Carline Jean, Sun-Sentinel Staff Photographer

A day after the story’s publication, MacLellan received a call from Broward Health North CEO Pauline Grant.

She invited MacLellan to speak at the hospital’s next management meeting.

“I was disappointed that we didn’t do a better job,” Grant said. “The emergency department is our front door, and we need to treat all of our families and patients with courtesy and respect.”

On May 15, MacLellan sat in a hospital conference room surrounded by almost 50 doctors, nurses and administrators, calmly retelling his experiences and taking questions. The atmosphere was serious but respectful.

“This is not right, and we are taking it as an opportunity to do better,” Grant said at the meeting.

Now, Broward Health North is working with SunServe to design sensitivity training for hospital employees, starting with those in the emergency room. In the past year, SunServe has been training nurses and health care workers in how to best treat LGBT patients, as well as analyze a facility’s practice for bias — such as using only “single, married and divorced” on records. SunServe has certified two assisted-living centers and a home health agency but had never worked with a hospital before, said the agency’s administrative director, Bryan Wilson.

Talking to Broward Health

Photos: Carline Jean Sun-Sentinel Staff Photographer

MacLellan will become one of the program’s trainers this summer, working with Broward Health North and other facilities.

There are few formal initiatives to make the health care system more welcoming to gay and lesbian patients, said Catherine Thurston, senior director of programs for SAGE, a national advocacy organization for LGBT elders that has helped train about 4,000 health care providers nationwide. More facilities and providers are willing to take steps, she added, as they recognize gay and lesbian seniors are among their patients.

 

 

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‘Things That Never Die’


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Photo Credit: Carline Jean, South Florida Sun-Sentinel

This is one of my favorite photos’ from Sunday’s article in the Sun-Sentinel, ‘In Sickness and in Health’ .  This picture was taken on Richard’s 83rd birthday on January 24th of this year. The picture really captured how good Richard was feeling as we started the evening.  As Diane Lade wroteRichard ordered one of his favorite dishes, salmon. He started to eat but became increasingly quiet.”   He was able to eat some of his salmon while enjoying his club soda with lime before we abruptly had to leave. Once we got settled at home and after his pain medicine kicked in,  he was able to enjoy some of the delicious cake that we were not able to eat while at the restaurant.  I know he thoroughly enjoyed the cake, and I wanted you to know that as well! 

As I continue to listen to the CD, ‘Love Changes Everything’ from the Gateway Men’s Chorus, I am struck by the lyrics from the song ‘Things That Never Die‘ on track 13…

The Pure, The Bright, The Beautiful

That stirr’d our Hearts in Youth

The impulses to Wordless Prayer

The Dreams of Love and Truth

The Longing after something Lost

The Spirits Yearning Cry

The Striving after better Hopes –

These Things Can Never Die.

The timid Hand stretched fort to Aid

a brother in his need

The kindly Word in Griefs Dark Hour

That Proves a Friend Indeed

The Plea of Mercy softly Breath’d

when Justice threatens nigh

The Sorrows of a Contrite Heart –

These Things Shall Never Die.

Let nothing pass, for every hand

Shall find some work to do

Lose not a chance to waken Love

Be Firm, and Just, and True

So shall a Light that never Fade

Beam on thee from on High

and Angel Voices say to Thee

These Things Shall Never Die

Dickens

The outpouring of love and support has been simply overwhelming.    ‘ The Longing After Something Lost’ has been tempered by  ‘The Kindly Words in Grief’s Dark Hour.’‘  Thank you, ‘Friends’, for expressing your love and support because, ‘These Things Shall Never Die.’ 

Don’t ever  pass up a chance to love!

TLO

 

 

 

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‘In Sickness and In Health’


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Greetings Friends,

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This past Sunday, the South Florida Sun-Sentinel published a story on Richard and me entitledIn Sickness & In Health’…(Click here for a link to the interactive story and video.) When we were approached to do this story, Richard and I thought long and hard about the thought of having two people follow us during some of our most intimate times in our life.  Not that our story is any different from those countless number of caregivers out there, however, we  both felt that telling the story from the prospective of a LGBT couple would demonstrate that its OK to love who you love.

Now, almost three full days since the article has been published, I am overwhelmed by the support that this article has generated and felt compelled to thank Diane Lade and Carline Jean from the Sun-Sentinel for telling our story is such a beautiful way.

Since ‘TLO’ made his life transition on March 9th, I have spent quite a bit of time listening to a CD entitled “Love Changes Everything” recorded and produced while I as a member of The Gateway Men’s Chorus in 2010.  At ‘TLO’  memorial service last week in Fort Lauderdale, I used three songs in this CD as part of his celebration of life.  Things That Never Die; Rise Above The Walls; and Somewhere Over The Rainbow.  If time would have permitted, I would have also played, In Whatever Time We Have, Who Will Love Me As I Am and Webber Love Trio.  I plan to incorporate these songs into TLO’s Celebration of Life service in St. Louis on Sunday April 27.

In one of my last blog post before TLO made is life transition, ‘Approaching The Final Destination’, I wrote, “Cancer is not the winner here, Love is the winner!”  Now after reading all the comments on-line and emails that I have received, along with the many phone calls that  have come in,  I now know why I started  to listening again to the CD  from the Gateway Men’s Chorus, because “Love Change Everything!” 

Click here to read our story and see our video:

In Sickness and in Health: A Couple’s Final Journey

Photos and video by Carline Jean

Story by Diane C. Lade

cjmrjoYou see…We might of had Cancer, but Cancer never ever had us…we had love!

 

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Love Is The Winner


❤ ❤ LOVE IS THE WINNER ❤ ❤
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
❤ I LOVE YOU ❤

By Mary MacLellan-Stough

Three magical words that make a heart flutter.
Will make someone’s heart melt like butter
Just hearing those words uttered.
Life is full of ups and downs
And at times the see-saw seems weighed down.
Then someone comes along and touches your heart and soul
and takes your breath away.
When you wish upon a star
Your loved one isn’t very far.
They are closer to us than you will ever know-
Tossing pennies from a far
Letting us know how loved we are.
The hugs we feel when no one else is near
The dimes, the parking places we find
Remind us we are not alone as we fear.
Those hugs we feel, they are real,
The soft whispers in our ear
Next thing we know we shed a tear.
The world keeps moving-life goes on
But we keep trying to be strong.
The signs are there, we just need to be still,
Then there is a yellow butterfly, which gives you a chill.
They come when we least expect them, but need them the most.
The timing is never right when a loved one departs
But their physical journey here is over, time to start a-new
In a place that is all brand new.
No pain, no suffering-all sorrow is gone
Replaced with happiness and a glow
That one day we all will know.
Imagine the reception when we arrive
Our loved one(s) will be there to greet us home.
We are never alone on this journey here on earth.
Richard is up there watching over you Chris.
“Put in a good word, tell everyone hello.”
Until we meet again TLO ❤ ❤ ❤
With Love to you from me
Your younger sister I will always be…Meo

Mary

Mary MacLellan-Stough

 

This poem was beautifully written by my sister, Mary MacLellan-Stough and will appear on the back folder of our  Celebration of Bernard Richard Schiffer life in both Fort Lauderdale and St. Louis

 

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Celebrating The Life of Bernard Richard Schiffer


Loss wouldn’t hurt so much if we didn’t love so much.  But who wants to live without love?  ~ Loren Olsen, Ph.D.

We will be celebrating the life of Bernard Richard Schiffer in South Florida on April 9th from 5:00 pm to 7:00 pm at Kraeer-Fairchild Funeral Home, 4061 North Federal Highway, Fort Lauderdale, FL 33308 and then in St. Louis, MO on Sunday April 27th from, 2pm ~ 4pm Christ Lutheran Church, 1 Selma Avenue Webster Groves, MO 63119.  In lieu of flowers,  and to support advocacy for LGBT Seniors, your kind donation to SunServe Silver Serve Program is appreciated:  2312 Wilton Drive, Wilton Manors, FL 33305

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Bernard Richard Schiffer 2010

Bernard Richard Schiffer 83, of Deerfield Beach, Florida made his life transition under the wonderful care of Gold Coast Inpatient Hospice on March 9, 2014.  Bernard is survived by his domestic partner, Christopher MacLellan, his In-Laws Bernice Schiffer; JoAnne, Merrille (George), Mary, Jim (Pat), Gerri MacLellan. Niece Elyse (Philip), nephew Scott, along with an abundance of great nieces, nephews and cousins.  Bernard would specifically like to recognize his great nieces Leah and Rachael, who knew him as ‘Their Funny Uncle!”

Bernard is preceded in death by his parents, Sophie and Saul, brothers Donald, Roy and Franklin.

Bernard grew up in Brooklyn, New York and has lived in Manhattan, Deerfield Beach, FL and St. Louis, MO.   Bernard loved opera, ballet, theater and classical music.

 

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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 grateful 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 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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Approaching The Final Destination


I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love ~ Mother Teresa

With TLO’s recent diagnosis that his cancer has spread to multiple parts of his body,  I have to admit this news, along with intense Caregiving over the past month, has put me in a position where I have hit the wall with LifeChangesblogging. While  I’ve learned over the past two years  that writing about TLO’s bout with esophageal cancer has provided a great deal of comfort for both of us, I now find it interesting that writing about the end stages of our Caregiving journey to be a tad more difficult. 

And that is precisely where we are at in our Caregiving journey, we are at the end-stage.

TLO was admitted to Gold Coast Hospice as an inpatient  on Monday, March 3rd.  We are in a small 8 unit facility under the umbrella of Broward Health. With the mindset that we were going to inpatient care Hospice-1“just for a few days for an evaluation and re-set of his medications;”  we have since learned that God and TLO’s body had other plans.

 The last thing he said to me on Monday night was…”Please go home and get some rest, I will be OK here and we’ll see each other in the morning.”  Reluctantly I agreed with him and headed home.  Now knowing that this is going to be our  last lucid conversation we have on this journey is fitting, for in  his time of strife, his  concern and love for me was first and foremost in his mind. We tend to share that similar trait when caring for each other.

TLO has been resting comfortably in our hospice suite since Tuesday; in and out of consciousness, his little body is ravished by cancer.   “We don’t know how this man has lived so long with the amount of cancer that is 1385583_607513719290066_905165614_n (1)inside of him,” the hospice doctor said to me Friday. “It is only by the grace of God and the love that the two of you have that has kept this man alive.” The Doctor’s words are comforting because it has taken me a few days to get beyond the quick transition from our Monday evening conversation, to finding him resting peacefully since my arrival on Tuesday morning. I suspect that he needed that time alone on Monday night moving into Tuesday morning, so that he could rest and prepare for his journey.   

TLO_Sis Feb 13

TLO with my sister Sissy, Feb 11, 2014

While in the midst of Caregiving, we often lose sight of what is transpiring right in front of us because we are so intent on service and care. Trips for radiation become routine because that is something that is just a part of our day?  With one of my sisters here helping us for the past month, I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that. 

“If you could look inside his body you would understand what is going on inside of him” was another comment the hospice doctor said to me on Friday.  This ‘trip’ has been hard for me to accept because I am so used to him just getting up and continuing on.  He is such a fighter! Yet this ‘trip ‘ is just a little bit different because he has acknowledged that he is tried, he has acknowledged that he is ready and from our previous conversations,  he knows that I am going to be safe.  So in just a few short hours, I have had to learn how to separate my emotions from the reality that we face; TLO was able to do that after I left on Monday night. In fact, he had prepared for this day longer than I have ever realized.

The Mad Hatters

Chris and TLO at SunServe’s Hat and Garden Party 2013

I have had to put into perspective that this journey just did not start on Monday of this week, this journey started over three years ago in a little Greek restaurant in Indianapolis when there was the first indication that something might be wrong with his throat.  Through all the tests and tribulations of the last three years, not to mention the original diagnosis of 3 to 4 months to live in 2011, I’d say we have had a pretty darn good run at it.  Up until recently, we have had more good days and bad, and along the way on this journey, we have met so many wonderful friends from around the world who simply ask…”How’s TLO”.  The Caregiving community is so vast, so strong and so very comforting;  Where would we have been without you!

TLO is just mighty fine my friends!  He is resting peacefully, and we have been able to communicate through touch and some words.  He now gets to run the show and call the shots. Actually, he’s been doing that for quite some time, I’ve just been here proud to be along for the ride.  Right now I just want to be his partner, holding him close, caressing and kissing him while telling him that I love him with an everlasting love.  His squeeze of my hand gives me strength and helps take my sadness away.

You seeCancer is not winning here.  Love is winning here.

The Bow Tie Guys

 

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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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Filed under Caregiving, Hospice, oncology, TLO

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

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