Tag Archives: LGBT Seniors

It Would Have Been Awesome: But It Was!


“It Would Be Awesome To Get Married, Even If For One Day, Because It Would Solidify What We Already Know ” ~ Chris MacLellan November 2013

weddingringsWhen the clock struck 12:00 am on Tuesday, January 6th in the State of Florida, same-sex marriage became the law of this fine state: Hooray I said! Of course there will be people appalled by this decision to grant equal rights under the protection of marriage; bully to them! I wonder about those who ‘worry’ about granting equal rights to same-sex couples through marriage?  Do they need a ‘piece of paper’ to signify their love? We’ve heard the religious arguments, the family values arguments, heck, even heard that world might end if same-sex marriage became law. Last time I looked outside, the ground was still standing firm in this fine state of Florida.

Same sex couples have known for a zillion years that we do not need a ‘piece of paper’ to solidify our love; however that ‘piece of paper’ does solidify our equal rights.   Bigotry and hatred, unfortunately, will always be  around us, yet that ‘piece of paper’ provides clear protection  to all couples who have been together, one day, or 50+ years.  When you look closely into the laws, both federal and state, and see how laws are granted to those who are married, this ‘argument’  of  marriage equality comes into perspective.   As Americans, we do not often like to talk about death and dying, but all the rights granted by marriage are intertwined at the time of death.   Did you know that in every state of the nation that the next of kin for an adult is a spouse! Until you’ve been denied the right to be with the one that you love at the time of death, or asked, ‘Who Are You’ by medical staff, or have been told, ‘your not next of kin’ after your partner hasThe Bow Tie Guys passed away, you never fully grasp the inequality.

Yes, this day is bitter-sweet for me: I’m sure I am not alone.  Richard and I talked about getting married, and it would have been an awesome thing to do!   I can’t imagine us getting married would have deepened our love, it just would have solidified what was already known! Yet I do hope our Caregiving story, In Sickness and In Health: A Couple’s Final Journey and what happened to us along the way as an unmarried couple,  helped pave the way for this historic day in Florida.   In some small way, I am sure that it did! 

Yes, it would have been awesome to get married, but our life was awesome together, without that ‘piece of paper! It would have been awesome to gather our  family and friends together for a ceremony, but heck, they all knew that we loved each other, that we were committed to each other, without that ‘piece of paper.’  As one of my sisters said to me today, “Heck, you two were everything to each hands touchginother, but married.” She was so right, because, in the end, the only thing that matters is that love, care and commitment is the same for any two people who are committed to each other as one.  Our ‘piece of paper’ was imprinted in our hearts.

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Listen In Love


The First Duty Of Love Is To Listen.

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Celebrating Richard’s 83rd birthday January 24, 2014

When Richard mentioned ‘Hospice‘ for the first time in December of 2011, it opened the door  for one of the most beautiful and meaningful conversations that two people could ever have over a sensitive topic. Just a few months after his diagnosis with esophageal cancer, this conversation happen so matter-of-factually, that by the time the conversation was over, there was no pain, no agony; just  lots of tears from an honest conversation between two people who just happened to loved each other.

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Chris and Richard is Arles, France 2006

Many years ago I had the opportunity to intern in hospice, it was quite a remarkable experience. High profile doctor’s humbled; broken families reunited; husbands, wives, siblings children, partners letting go, provided me with the opportunity to look at hospice through different set of  lens. I was, and continue to be, forever grateful for that experience.  While I tend to be on the spiritual side, Richard claimed to an agnostic Jew. I always found that funny because Richard was  one of the most spiritual and ground persons that I have ever met. Often misunderstood for his gruff demeanor and direct comments, Richard was rooted in his clear thoughts and perspective. You may not like what he had to say, but you never walked away from a conversation with him without knowing his opinion or where he stood.. It is really the best way to communicate: boy do I miss those conversations with him.

Honest dialogue often brings out the best and sometimes the worst in people. However without honest dialogue, what then is communication? Our decisions during our caregiving journey was guided through our honest dialogue.  I remember Richard clearly saying, “I will tell you when I’m ready to go to hospice!”  When I look back to that day on March 3rd when he got out of the chair on his own and walked to the gurney to be taken to hospice, that was his way of telling me that he was ready to go.  Hospice, end of life, life transitions, however you want to frame it,  we both knew where we stood,  we both knew what was important to us and we both knew that when the time came for hospice,  we would embrace it and deal with it.

Planning for the day, when there will be no more days is challenging.  How does one really do that?  By having an honest and open conversation before there is the need.   While there may not be a need for Hospice today, there is a need to talk about Hospice.  The effects of a diagnosis of Cancer are enormous on everyone, yet we must not allow any disease to drive us.  Fear is debilitating, HourGlassmaking a decision while in fear, can be crippling.   Find a way to have ‘that’ conversation about hospice.  In our case, the conversation just happened, but that is not the case for every caregiver and their caree. One way to make this difficult conversation comfortable is to ask open-ended questions, I.e., ‘It is important for me to know your thoughts on the type of care you want to receive so we can make good decisions together.’

As advocates for hospice, Richard and I  looked at hospice as a way to celebrate life in all of its stages.  Hospice is just not for the patient, hospice is for the entire family. While Richard  and I might have shared different opinions on life after death; one thing that we did know is that while we are alive, we are going to enjoy every second, minute, hour, day, month, year we had left. I think we accomplished that because we had the ability to talk openly about his wishes.  The memory of these intimate conversations with him is what helps me get beyond my grief and allow me to heal.  My you find your peace in your after Caregiving journey, too.  

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In Sickness and In Health: Saying Goodbye


Friends: As many of you know, Richard and I allowed two terrific journalist Diane Lade and Carline Jean from the Sun-Sentinel to follow us during our Caregiving journey. On Sunday September 28th, ironically, one year to the day when Richard and I were told that the cancer has spread to his spine, the Sun-Sentinel published the final story on our caregiving journey. Thank you to not only the Sun-Sentinel, Diane Lade, Carline Jean, but also to Mark Ketcham, Bryan C. Wilson and Jamie Evans for not only being with me on this special day, but also for being there during this entire experience.

My faith tells me that I will see Richard again; My mind tells me that he is forever pain-free; My heart tells me that he is right beside me.

The story below is copied from the Sun-Sentinel: The pictures in this post is how the story appeared in the newspaper edition; to see the online version click here! 

More online: Find the original series and video at SunSentinel.com/finaljourney and watch as Chris MacLellan says a final goodbye at SunSentinel.com/goodbye.

In Sickness and in Health: A couple’s final journey

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A new beginning: Navigating the challenges of moving on

By Diane Lade Staff Writer for the Sun-Sentinel: Photo’s by Carline Jean Staff Photographer for the Sun-Sentinel

Copyright © 2014, South Florida Sun-Sentinel

 

“A New Beginning” Chris MacLellan thought nothing could be harder than watching his partner, Bernard Richard Schiffer, slowly lose his life to cancer. Letting go once he was gone, however, was almost as difficult. The couple allowed the Sun Sentinel to share their story to shed light on issues gay and lesbian couples encounter at life’s end. Now,MacLellan faces new challenges, including how-to say goodbye to the man he had loved

Chris MacLellan was on a boat, heading into the Atlantic Ocean.

In the six months — to the day — since his partner, Bernard Richard Schiffer, died of esophageal cancer in a Fort Lauderdale hospice ward, so much had changed. He moved out of their small Deerfield Beach home. He left his job. And he was almost ready to start a new life in New Orléans.

Except for one thing. On this bright September morning, carrying a lovely, handmade paper box with the ashes of the man he’d loved for 11 years, MacLellan knew what he had to do next. On this last leg of their journey as caregiver and patient, he was here to say goodbye.

“It kind of completes my caregiving duties for him, so I can go back to just being his partner,” he said.

MacLellan, 57, and Schiffer, who died at 83, agreed last year to let the Sun Sentinel chronicle their final months together in hopes of bringing awareness to the special issues gay and lesbian couples face at the end of life. The April 13 story, “In Sickness and In Health,” drew a huge response from readers who identified with the pain of caring for a dying loved one. Many expressed surprise and outrage that a lack of marriage rights can encroach on a couple’s health care rights.

In Florida, where same-gender marriage is not recognized, partners can find the health care system hard to navigate.

Widowerhood, it turns out, is much the same way.

The green folder

With his partner gone, MacLellan felt alone in more ways than one.

His thoughts turned to their shared green folder, where the couple had kept legal documents like living wills, health care surrogate forms and powers of attorney. MacLellan and Schiffer had worried because gay and lesbian couples aren’t automatically granted the right to make medical decisions for each other — so the green folder accompanied them almost everywhere.

Now, MacLellan wondered: Whose name would replace Schiffer’s in the green folder? Who would be his surrogate?

MacLellan has no children. Although he has good relationships with his five siblings, all live hundreds of miles away.

And if he named a family member, what would happen in the event he fell in love again and another partner came into his life?

Still working as senior services coordinator at SunServe, a gay and lesbian social service agency in Wilton Manors, MacLellan in April turned to friend Katharine Campbell.

Campbell, a Wilton Manors psychotherapist who had been SunServe’s mental health program director, said she wasn’t surprised when MacLellan approached her with the life-and-death responsibility.

“I’ve been asked to do this so many times in South Florida,” said Campbell, 39, formerly a medical social worker.combined Sept 28_Page_2

She said relatives sometimes reject gay and lesbian seniors, or grow distant once they’re widowed, assuming grief isn’t part of losing a partner.

“We have an aging LGBT community, and they are starting to realize, in the state of Florida, they need these forms,” Campbell said.

MacLellan was relieved when she said yes.

The house

It took MacLellan a bit longer to make a decision about the house he had shared with Schiffer.

Right before meeting MacLellan in 2003, Schiffer had taken out a reverse mortgage on the house he had purchased 15 years ago with his late partner, in the Deerfield Beach Natura retirement community.

A reverse mortgage allows homeowners age 62 or older to draw money from the equity without paying it back. Like many seniors, Schiffer took this route when his medical bills began mounting.

The catch: When the senior borrower dies, the property’s inheritors may have to buy back the house from the lender if they want to keep it.

MacLellan wasn’t named on the deed. Under federal regulations passed in August, widowed spouses and partners who aren’t listed as borrowers on the loan can stay in the home until they die as long as they pay for taxes, insurance and upkeep. The rule applies to gay and heterosexual couples, to partnerships as well as legal marriages, said officials with the U.S. Department of Housing and Urban Development.

This didn’t apply to MacLellan, however. The new rule affects only mortgages taken out on and after Aug. 4, 2014. He wouldn’t have qualified anyway for multiple reasons, including that he wasn’t with Schiffer at the time the loan was taken out.

MacLellan didn’t know if he wanted to repurchase, short sell or foreclose on the little white house, still filled with hundreds of Schiffer’s Wedgwood pottery pieces and knickknacks. The lender told him he had a year to decide, he said.

MacLellan drifted on the tide of his grief. He cut his hair, which he had left long because Schiffer liked it. He went back to work. A few men, knowing MacLellan was single again, asked him out for coffee or to see a movie, and he agreed half-heartedly.

On May 22, MacLellan found a bright yellow “No trespassing” sign posted on his front door.

The posting said the property was being claimed by the bank, and MacLellan panicked. He envisioned police arriving within hours and watching him as he scrambled to remove cherished mementos.combined 3 pages sept 28_Page_3

After making calls, MacLellan learned he still had until March 2015 to make a decision. He took down the yellow “No trespassing” notice and stored it in the green folder.

The scare jolted him out of the haze of his mourning, though. He wasn’t sure if he wanted to be tied down to the house. “Too many memories. And it needs a lot of work,” he said.

What sealed his decision was having to drive himself to the emergency room in mid-July, convinced he was having a heart attack. The doctors said it was stress.

MacLellan opted to walk away from the house and started packing in August. He sold all of Schiffer’s collectibles, the furniture and appliances — netting almost $10,000.

Among the few items MacLellan kept: some lamps and artwork he and Schiffer had purchased together, and an old album filled with black-and-white photos of Schiffer and his previous partner, one showing them standing in front of their then-new house with their real estate agent.

He also kept three ceramic Wedgwood eggs, one of which contains some of Schiffer’s ashes.

One neighbor, shortly after MacLellan was served his foreclosure summons, came over to say goodbye and offer condolences. The rest watched at a distance.

MacLellan decided to stay with a friend until leaving town. On Labor Day weekend, he locked up for the last time and drove away.

The move

Shedding the house opened a door for MacLellan, and he eagerly walked through.

Instead of staying in South Florida, with its large gay and lesbian senior population, or returning to his hometown of St. Louis, he turned his sights to New Orléans. That’s where one of his sisters, Gerri Cortello, lives.

Cortello, 65, said she knows little about her brother’s life as a gay man, although she had met Schiffer. It was a topic they never discussed, she said.

Cortello was stunned, when reading the Sun Sentinel’s story on Schiffer’s final months, by the challenges he and her brother had faced.

Cortello knows about caregiving. She was only 27 when her husband died of pancreatic and liver cancer, leaving her with four young children.

It hadn’t occurred to her, however, that a man dying of cancer and his longtime partner would be treated any differently than she and her husband had been 38 years ago.

“I hope that, somehow, we can get some laws changed. It’s not fair,” said Cortello. In Louisiana, like in Florida, gay marriage remains illegal.

Processing the death of someone you love has no timetable, Cortello said, whether your beloved is the same gender as you or not, whether you are young or old.

“You have to let people feel what they feel. There is no time frame. You feel so … cheated, I guess,” said Cortello.

What’s next?

MacLellan quit his job at SunServe, where he had worked for almost three years, as he finalized his moving plans in August.

His dream is to write a book about his end-of-life journey with Schiffer, and he’s trying to restart an Internet radio show about caregiving, called “Healing Ties from Chris MacLellan the Bow Tie Guy.”

While a social worker by training, MacLellan is eager to forge a new career in media and is working on a master’s degree in communications and leadership online through Washington-based Gonzaga University. He knows it may be challenging to make a living this way, he said, even with the help of staying with family.

Money is an issue. When Schiffer died, his $1,300 in monthly federal benefits were gone, too — more than half of the couple’s household income. Florida’s lesbian and gay couples, at this point, are not entitled to survivor Social Security benefits, even if they were legally married elsewhere, said Stephanie Schneider, a Plantation elder-law attorney who worked with MacLellan and Schiffer.

After paying off medical and funeral expenses, MacLellan said just $400 remained in Schiffer’s bank account.

In mid-August, about a dozen of MacLellan’s co-workers gathered for a farewell party at SunServe. One commented that MacLellan’s sudden, dramatic changes — selling everything, leaving town without a job or much of a nest egg, writing a book — sounded “kind of scary, kind of exciting.”

“Yes, it caught me by surprise,” said his former boss, SunServe Executive Director Mark Ketcham. “But I support [MacLellan] fully. There are some people who can’t get out of bed for two years when someone dies. But there are some who mourn and move on.”

Ketcham said SunServe is exploring new ways to serve South Florida’s aging gay and lesbian community, in part sparked by MacLellan’s experiences.

More than a year ago, the agency started a cultural competency program aimed at training nursing homes and health care institutions to be more welcoming to gay and lesbian patients. SunServe has since certified two assisted-living centers and a home health agency, said Jim Lopresti, SunServe’s director of clinical services who is handling the program.

In the Sun Sentinel story, MacLellan described an incident last year when he had rushed Schiffer to the Broward Health North emergency room but was ignored by staff as they questioned his partner.

Just days after the story, the hospital’s CEO asked MacLellan to meet with her managers and began arranging competency training for the emergency room. Hands-on sessions with the Broward Health North staff will begin later this year, Lopresti said.

SunServe also may begin a referral service to connect aging gay and lesbian seniors with gay-friendly providers and help manage their care, Ketcham said.

While MacLellan isn’t involved in these efforts, he already has plans to continue his work promoting awareness of issues facing gay and lesbian seniors and their caregivers. He’s booked to speak at an AARP-Broward Health system roundtable discussion on LGBT caregiving in Fort Lauderdale in November, and another conference on LGBT aging in Nebraska later this fall.

Would he ever return to South Florida permanently? “Who knows?” MacLellan said. “At this point, I can go in whatever direction life takes me.”

Letting go

MacLellan traveled light into his new life. He left the house completely empty, the hurricane shutters covering the windows. He shipped a few boxes of belongings to New Orléans, packing the rest into his small car.

One last decision remained: What to do with Schiffer’s ashes. “I just can’t carry him around with me, I can’t,” MacLellan said.

His early September departure date was nearing. One night, he literally woke up with the answer.

“Richard loved going on cruises. So I just felt this was the final cruise he could go on and be happy,” he said, explaining how he came to be on a boat heading out from the Boynton Beach inlet.

Three people accompanied him: Ketcham, his former SunServe co-worker Bryan Wilson and Jamie Evans, who had been Schiffer’s favorite home health aide. Evans had been the person Schiffer trusted to see him at his worst, when he needed someone to bathe him and help him change clothes.

Now Evans helped MacLellan tuck, inside the boat’s cabin, two beautiful handmade, biodegradable paper boxes, in place of urns. One contained Schiffer’s ashes. The other held the remains of Schiffer’s former partner, which had sat on a bookcase for more than a decade.

When the boat was 3 miles offshore, the captain idled the engine, turning the bow into the wind. The plan was to place the partner’s box in the water first, then Schiffer’s.

Along the way, MacLellan suddenly began questioning whether to leave Schiffer’s box sealed.

“Set him free,” Ketcham told MacLellan, insisting Schiffer would have wanted him to open the box.

The moment came, and MacLellan began to cry. “By doing this today, I am able to regain some of the strength I have lost over the past few months,” he said to those gathered. “It’s a fitting start to a new beginning.”

He first dropped Schiffer’s partner’s container overboard. It landed on the deep blue water with a soft plop, like a pillow on a bed. Then, taking the box holding all that was left of the man he’d loved in sickness and in health, MacLellan leaned over the boat’s side and opened the lid.

The contents flew out and settled on the waves, spreading out slowly. MacLellan let go of the now-empty white box. It remained visible for a long time, drifting toward the open sea as the boat headed back to shore.

dlade@sunsentinel.com or 954-356-4295954-356-4295

More online

Find the original series and video at SunSentinel.com/finaljourney and watch as Chris MacLellan says a final goodbye at SunSentinel.com/goodbye.

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Advocacy Heals U: Healing Ties of Change


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

To listen to our show, simply click here! 

To learn more about Joni Aldrich simply click here!

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

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

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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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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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More Cancer: More Radiation


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

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

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

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

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

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

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

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

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

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

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

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

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

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The Caregiving YoYo


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.

 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!

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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’s are always ‘Hug A Caregiver Day’


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

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

Thursday’s are alwaysHug A Caregiver Day! 

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

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

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