The Purple Jacket

April 15, 2014 · 7:39 am

‘In Sickness and In Health’

Greetings Friends,

This past Sunday, the South Florida Sun-Sentinel published a story on Richard and me entitled ‘In 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

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

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Tagged as Caregiver, LGBT, LGBT Caregiving, Sun-Sentinel

March 24, 2014 · 10:10 pm

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 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

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

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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March 17, 2014 · 4:47 pm

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

The 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 of 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 for 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 free 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 see…We 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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Tagged as Caregiver, Caregiver Support, esophagus cancer, Family Caregiver, Gold Coast Hospice, Hospice, LGBT Seniors, TLO

March 8, 2014 · 10:39 am

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 blogging. 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 “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 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 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.

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 see…Cancer is not winning here. Love is winning here.

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Tagged as Broward Health, Caregiver, Caregiving, esophagus cancer, Hospice

February 13, 2014 · 3:09 pm

Coffee With A Caregiver

Coffee shared with our Caregiving family is happiness tasted and time well spent.

#CoffeeWithACaregiver

Thursday’s are usually held for “Hug A Caregiver‘ day, however, there is something exciting trending on the internet which was started by two of my Caregiving friends, G-J and Kathy who I have met through Denise Brown’s wonderful site, Caregiving.com . G-J was looking for another way to support Kathy, so she shared a photo with a cup of coffee, a cookie and a note of encouragement, Kathy returned the favor and before you know it, our friend Trish created the hashtag #CoffeeWithACaregiver. We’ve been exchanging virtual coffee greetings for the past week or so: Because of the challenging Caregiving week I had had with TLO, I can’t tell you how much I have looked forward to #CoffeeWithACaregiver each day. The daily support from #CoffeeWithACaregiver is very special, and very meaningful.

#CoffeeWithACaregiver is another great example of how Caregivers have this innate ability to understand and support each other even when the Caregiving journey’s are different. No matter what your Caregiving journey might be, finding support and comfort, in any form, is healthy and important to ones own personal health and well-being. I know that I would not have been able to get through all the challenging Caregiving days without my extended Caregiving family I have found through ‘The Purple Jacket’ and Caregiving.com

#CoffeeWithACaregiver 10:00am Friday Feb 14

On Friday, February 14, share the love with fellow family caregivers. Join all of us for a virtual cup of coffee and share the love of care. Simply use the hashtag #CoffeeWithACaregiver and share it across your Social Networks, Twitter, Facebook, Instagram, Pinterest. We’ll start posting at 10:00am, but feel free to post anytime of the day. We will all be sharing across our networks; it is not only going to be quite a bit of fun, you’ll see the love and support Caregivers have for each other right before your very eyes!

If you are a Caregiver and looking for a soothing place to share your story, join us on Caregiving.com. Denise Brown has created a soothing community of family Caregivers where we are all one, big, supportive, Caregiving family!

The Purple Jacket Highly recommends Denise Brown at the extended family at Caregiving.com

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Tagged as Caregiver, Caregiving, The Bow-Tie-Guy

February 6, 2014 · 11:07 am

Thursday’s are always ‘Hug A Family Caregiver Day!’

Sometimes All A Person Needs Is A Hand To Hold And A Heart to Understand!

Caregiving can sometimes be hard…

…But Hugging a Family Caregiver is easy!

Be on the look out for my new radio show, “Healing Ties” from ‘The Bow Tie Guy”

Caregivers: Sink Your Teeth Into Dental Hygiene! (thepurplejacket.com)
Rising Alzheimer’s creates strain on caregivers (bigstory.ap.org)
10 Tips for Caregivers Caring for those with Epilepsy (caregiving.com)
That’s What Caregivers Do! (thepurplejacket.com)
Whose Journey Is It? (thepurplejacket.com)
It’s Never Too Late To Start Over (thepurplejacket.com)
It’s Never Too Late To Start Over (thepurplejacket.com)
Progressive Holiday Blog Party with Caregiving.com (thepurplejacket.com)

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 together. 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 vary 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:

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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Tagged as advocacy, Caregiver, Family Caregiver, Health, LGBT Caregiving, LGBT Seniors, The Bow-Tie-Guy

January 18, 2014 · 1:38 pm

The Caregiving YoYo

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

How 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.

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 week-long 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!)

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.

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.

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 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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Tagged as Caregiver, Caregiving, LGBT Caregivers, LGBT Seniors, The Bow-Tie-Guy, TLO

January 9, 2014 · 4:27 pm

Friday’s Video Chat: Family Caregivers Talk Career and Caregiving

On Friday, January 10th at 3:00 pm ET, I have been invited by Denise Brown from Caregiving.com to join her and three other family on Caregiving.com weekly video chat. This week four different Caregivers talk about juggling a career and their Caregiving responsibilities. To watch the discussion, hosted by Denise Brown from Caregivnig.com simply click here!

Denise Brown began working with family caregivers in 1990 and launched CareGiving.com in 1996 to help and support family Caregivers. Through her blog, Denise share’s words of comfort and offer coping strategies and tips. Denise is also an accomplished Author and Public Speaker. If you have not visited Caregiving.com, now is a great time to do so!

Below is Friday’s guest list:

–Chris (me), who works for a social service agency and cares for his partner. Chris blogs on CareGiving.com and on his website, The Purple Jacket. Follow Chris on Twitter: @TheBowTieGuy

–Heather, a long-distance caregiver for her father who works for a regional medical center. You can listen to Heather talk about her Caregiving experience here. Follow Heather on Twitter: @HeatherSlutzky

–Shanika, a freelance multimedia copywriter in which she combines her skills as in 2D animation, illustration, and interactive media with web copy to create visually engaging sales messages. She works part-time from home in the mountainous area of Lithonia, Georgia, where she takes care of both her parents, Emmitt and Johnnie Journey, and her one year old son, Antonio. Follow Shanika on Twitter: @ShanikaJourney

–Trish, who cares for her brother, works as a legal administrator. You can read her blog on CareGiving.com and on RobertsSister.com and connect with her on Twitter, @robertssister1.

See you on Friday!