"Love And Marriage, What It All Really Means..."

In Sickness and in Health
A Couple's Final Journey

Photos and video by Carline Jean
Story by Diane C. Lade



CHRIS AND RICHARD

Chris MacLellan and Bernard Richard Schiffer never exchanged “for better or for worse” vows.

As a gay couple, marriage wasn’t an option in Florida. Instead, they lived together and loved each other for 11 years.

They met at a senior singles party in Fort Lauderdale and were immediately drawn to each other. Differences in age, personality and upbringing did not matter.

Before long, Chris moved into Richard’s house. They repainted the walls, made new friends and met each other’s old ones. A photo in their Deerfield Beach home shows them smiling and elegantly dressed for a formal night on a trans-Atlantic cruise. Both wore tuxedos and bow ties.

Richard, who previously had survived two coronary bypasses and prostate cancer, was diagnosed with esophageal cancer in 2011. By September 2013, the tumors had spread to his spine.

Video: Hear their story in their words

Together, Chris and Richard confronted the challenges of being an older gay couple not recognized by law, navigating a system they feared could rob them of their ability to care for each other in sickness and in health. After all, legal rights regarding death are intricately entwined with the privileges granted when people marry.

Chris, 57, and Richard, 83, each had previously cared for a dying partner. Despite this experience and diligent planning, Chris struggled.

As Richard took his last breath in a Fort Lauderdale hospice ward, Chris faced the possibility of not fulfilling his dying wish.

DECLARATIONS OF TRUST

Chris and Richard knew the rules were different for them. If one became terminally ill, the other would not automatically get to make medical decisions.

Early in their relationship, long before signs of terminal cancer, they had the conversation other couples often put off for years: If you were seriously ill, how much medical treatment would you want? When would life no longer be worth living? How would you feel about granting your partner the ability to make those decisions?

Chris, tall with creamy Scotch-Irish skin, is a born caregiver. A devout Midwestern Catholic, he once studied to be a priest and today works as the senior services coordinator for SunServe, a lesbian, gay, bisexual, transgender and questioning social services agency in Wilton Manors.

Richard, an acerbic atheist of Jewish heritage, stood almost a foot shorter than his partner. A street-smart retired textile salesman raised in Manhattan, he had braved the days when going to a gay bar in Greenwich Village could get you arrested.

So different, in so many ways.

The medical directives born from Chris and Richard’s early discussions — their living wills, health-care surrogate forms and powers of attorney — were in a way love letters to each other: The ultimate declarations of trust.

Chris and Richard feared unaccepting hospital staffers or legal glitches could keep them from each other’s bedside. So these documents, along with copies of their reverse mortgage papers, remained tucked away in a bright green folder they took almost everywhere they went.

Whether on a road trip to attend Chris' family reunion in St. Louis in early September, or for a quick visit to the hospital, the green folder was never too far from reach.

By September, Richard already had outlived his doctors’ prognosis by almost two years when he developed a sharp pain in his back. He began struggling to sleep and to breathe. Chris knew the situation was serious when Richard, who loathed hospitals, asked to go to the Broward Health North emergency room in Deerfield Beach.

“When we first got to the ER, [the medical staff] paid 100 percent attention to Richard and didn’t really acknowledge my presence,” said Chris, noting a difference in how personnel sometimes approach two men arriving together, as opposed to a man and a woman.

“When I tried to speak up, and give them more of the full story about what was happening, they said, ‘Who are you?’ ”

A few hours later when Richard required more tests, it happened again. “The technician asked me what I was doing there,” Chris said.

Most of Richard’s regular doctors respected the couple’s relationship. At South Florida Radiation Oncology in Coconut Creek, radiation therapist Henry Diaz made a point of introducing himself to Chris when Richard started treatment there in mid-October.

Tests identified the source of Richard’s growing back pain — the cancer had spread to his spine. His age and condition made surgery too risky. Instead, doctors proposed radiation five days a week, but with a warning: The treatment was only to keep Richard comfortable. Things were not going to get better.

NO ONE TO CALL

After Richard’s trip to the ER, doctors suggested the couple rent a portable oxygen unit for the house. Yards of clear plastic tubing snaked from Richard’s living room chair, across the parquet wood floor, to the oxygen machine, which hissed ominously.

“I know now that I eventually can’t do all this by myself, because he’s really quite sick,” Chris said one October afternoon. “I need to reach out to friends or an agency and develop a care team.”

But whom to trust? And how to balance caregiving with Richard’s strong opinions and the independence that defined his life? They fought regularly over Richard’s insistence on showering himself while alone.

“Every day, I worry I will come home from work and find him dead on the floor,” Chris said.

Richard had been in the small Deerfield Beach house in the Natura senior community for 38 years. While the men were on “friendly hello” terms with neighbors, it unnerved Chris he had no one nearby to call if Richard, home alone, had an emergency.

A few friends helped with transportation or visits: “I have been sort of disappointed by the gay community,” Richard remarked one morning in October. “It’s all party, party, party. What cruise they have been on, when they are going to the theater.”

Chris and Richard didn’t have children, or relatives in South Florida. The youngest of six siblings, Chris maintains a good relationship with his family but didn’t tell them he was gay until he was in his 40s and rarely sees them.

As for Richard: “I have no family,” he declared.

In fact, Richard did have several cousins. His sister-in-law, and a niece and her family, also live near Clearwater. In recent years, Richard re-established contact with this niece after a long estrangement.

Despite having three brothers, Richard said he basically grew up alone, the gay offspring of strict parents who showed him little love or acceptance.

Chris started a blog, "The Purple Jacket,” two years ago to help gay and lesbian seniors in “the struggle of aging in a straight society.” The blog, whose faithful readers he considered family, became the place where he could unload his worries throughout Richard’s declining health.

Medical exams like MRI scans were fodder for the blog, as Chris snapped shots with his cellphone. He even sometimes updated the blog before calling his sisters with the latest news.

'TOO MANY WOMEN'

With little help, and working full time, Chris was determined to find a gay-friendly place to watch over Richard.

Chris knew that gay seniors fear discrimination in care facilities but felt that Richard could stick up for himself.

Richard came out in his early teens, uncommon for many gay men of his generation. That toughened him up.

Chris always believed Richard’s attitude, in many ways, was a reaction to growing up an openly gay man: “He’s saying, ‘You can’t discriminate against me or reject me because I don’t care what you think.’ ”

Richard was an opinionated and, at times, difficult patient. When one of his oncologists asked why he had stopped taking an antidepressant, Richard snipped back, “Because it made me depressed!”

Despite his bluster, Richard made Chris promise to never place him in a nursing home.

“I think he truly would rather die,” Chris said in October.

Richard begrudgingly agreed to spend one day a week at the Noble A. McArtor Senior Day Care Center in Fort Lauderdale, which is run by the SunServe agency and specializes in frail gay and lesbian seniors.

It wasn’t easy for either of them: On the first day, after dropping off Richard, Chris wept quietly in the parking lot before heading to work. Richard, looking stoic but bored, settled into an easy chair. He observed but didn’t participate in a current events quiz led by an enthusiastic volunteer.

Within a month, Richard announced he was done with day care. “Too many women,” he complained. “It’s not for me.”

FINDING A FRIEND

Finally, in mid-November, a breakthrough: Chris hired a certified home health aide who bonded with Richard almost immediately.

“I think me being gay makes someone who also is gay more comfortable with me helping them,” said Jamie Evans, 42, who works for Emerald Elite Senior Home Care, a Wilton Manors-based agency that caters to South Florida’s aging LGBT community.

While Richard could be quick to slap away Chris’ efforts to help, he delighted in appointments with Jamie.

“From the first day Jamie walked in, you could feel the chemistry,” Richard explained.

Home health aides don’t provide medical care, although they often must perform tasks too intimate even for a patient’s family members. Jamie lifted Richard in and out of the car, pushed his wheelchair and held him up in the shower. He drove him to radiation treatments and picked up prescriptions.

He also took Richard to lunch and gossiped about which restaurant makes the best French onion soup.

“Jamie and I can talk as really good friends. I don’t feel embarrassed to ask him to do anything for me,” Richard said. “He doesn’t treat me like a diseased person.”

‘IF IT WASN’T FOR CHRIS, I WOULD NOT BE ALIVE TODAY’

By December, Richard’s days alone at home were long, broken only by his medical appointments and twice-weekly visits from Jamie. He spent much of his time sleeping in his recliner, waiting for Chris to come home and settle down beside him.

Sitting on the sofa with Chris one evening, Richard took his partner’s hand, a rare moment.

“If it wasn’t for Chris, I would not be alive today,” Richard said. “Knowing that someone is sitting next to you, caring, feeling … also suffering along with you ... The affection and the love that I received from a male, I never thought it would ever happen.”

Richard began to cry.

Emerald Elite’s gay-focused home health care, and Jamie’s camaraderie with Richard, helped Chris resolve one problem. With the holidays looming, Chris next grew increasingly desperate to find ways to re-create happier times, when they would take vacations, attend plays and concerts, and dine out.

“I miss the way my life was just a year ago,” Richard said one afternoon, looking at his cupboard filled with the Wedgwood pottery collection he loved to putter with, buying and selling on eBay.

Around the Christmas and New Year holidays, Chris planned a road trip to the Clearwater area to see Richard’s once-estranged niece. At the last minute, Richard was in too much pain to sit through a five-hour ride. Instead, the couple spent New Year’s Eve in their side-by-side chairs at home, Richard’s oxygen pump hissing while they had an early evening toast.

Richard then booked a Caribbean cruise for early January, making arrangements for portable oxygen canisters.

Once again, the trip was canceled, this time within a few days of departure. Chris was despondent. Richard, whose breathing had become more labored, seemed relieved.

Richard's Birthday

Jan. 24, 2014, Richard’s 83rd birthday, began on an upbeat note. For this night, Chris wanted to leave behind all that the green folder represented.

Chris made reservations at one of their former haunts, D’Angelo, a lively Fort Lauderdale tapas bar, and invited two friends.

Richard ordered one of his favorite dishes, salmon. He started to eat but became increasingly quiet.

Richard moved from his chair to sit next to Chris on a banquette, grimacing in pain, while his partner frantically tried to steer the evening toward success.

“Are you feeling OK? Do you know that I love you?” Chris asked repeatedly, as Richard huddled miserably at the end of the bench, silent.

“Don’t ask me again!” Richard finally growled, turning his face to the wall.

Chris quickly called for the check. The fancy little cake Chris had brought remained untouched in its box.

The birthday was over.

NO SAFETY NET

The Family and Medical Leave Act protects workers who must take extended time off to care for themselves, a spouse or other family member. But it only applies to gay couples who are legally married.

So working caregivers such as Chris are at the mercy of their employers as they juggle jobs and care duties.

In what became a nightly routine, Chris caught sleep in two- or three-hour spurts, as Richard staggered out of the bed they shared, shuffled out to his recliner, then eventually shuffled back into the bedroom.

The spread of Richard’s cancer made it increasingly hard for him to breathe. Pain from sitting or lying in one position for too long often kept him up.

One night, Chris followed his partner to the refrigerator about midnight. He pulled out gelatin to soothe Richard’s throat. They repeated this process several times, into the early morning hours.

By 9 a.m., Chris was at his desk at work.

Chris considered himself lucky to work at SunServe, where a large number of his supervisors and co-workers were gay men.

He could have made more money in the corporate world, Chris said, but the support he received from SunServe was worth his staying.

“I know I have a larger earning capacity. But if I was working for a major corporation, I probably would have been unemployed months ago,” he said in early February.

At this point, shrinking bank accounts and his financial future joined Chris’ worry list. The couple had sold Richard’s car in January, to save the $150 a month on insurance. Chris would have loved for Jamie to visit more frequently than twice a week, but Medicare didn’t cover Richard’s home health care.

Chris and Richard didn’t have pensions. Even if they had, they might not have been allowed to receive survivor benefits, as these only are awarded to legal spouses. Richard’s former long-term partner had generous pension and retirement health benefits through his 43-year teaching career in suburban New York. Richard received nothing when his partner died.

Richard’s $1,300 monthly Social Security check made up about half of his and Chris’ household income. Had they been married, Chris could have some day received survivor benefits because the Social Security Administration is considering changes in policies for gay partners.

In the gay community, relatives have been known to successfully challenge a longtime partner’s inheritance, so the two men drafted wills to make sure Chris got the house. Richard took out a reverse mortgage years ago to generate money for medical bills and, with declining property values, the loan became upside-down.

Chris has pictured himself in 20 years: an aging gay man with no children and no partner, like so many seniors who come to him at SunServe, alone and seeking help.

AN UNEXPECTED VISIT

In the middle of February, a few days before his birthday, Chris received a call from his sister, Merrille MacLellan, who was planning to visit from St. Louis.

Her reason: Chris admitted he needed help.

“I knew that Chris was exhausted. And I was afraid if I didn’t take the opportunity, I never would see Richard again,” said Merrille, 73, who goes by Sissy.

In his 30s, Chris had lived with Sissy and her family for about a year but had never brought home friends and “basically just slept there,” she said. “It was like he was part of the family but he wasn’t.”

Sissy was the only relative to show up at Richard’s bedside.

On Feb. 18, Chris’ 57th birthday, the results of Richard’s medical scans arrived. The cancer had spread again, reaching further than the doctors imagined. Not just to Richard’s spine, but to both shoulders. Down his arm and into his ribs. And into his liver.

Chris fretted over how to break the news, and couldn’t bring himself to tell Richard everything.

“His appetite isn’t right anymore. So when I hear the cancer is in his liver, I have to connect the dots. The signs the dying process has started are there,” Chris said, with a sigh.

He admitted to growing tired, surprising given Chris so identified with being the upbeat caregiver’s advocate.

THE FINAL DAYS

On a Saturday morning in March, Chris gave Richard a shower and found two open, painful-looking wounds just above his right buttock. Bed sores.

He immediately contacted Richard's doctors and, after several more calls, decided to take him to a Gold Coast hospice ward at Broward Health Medical Center in Fort Lauderdale. He was told doctors could heal Richard's bed sores, adjust his pain medication, then send him back home to receive nursing care.

Chris braced for Richard to resist hospitalization on Monday, but Richard was ready to go. At the house, a hospice worker went through their green folder, picking out the critical documents that established Chris and Richard's medical rights as a couple.

That evening, Richard was in the hospice ward.

The next day, Richard was moaning and thrashing in his hospital bed. He could speak and sip water through a straw, but he seemed incoherent at times. When Chris arrived at the hospital after spending a few hours at work, he was shocked to see Richard appeared worse.

“Help me,” Richard said.

Chris had the nurses readjust the pillows and Richard's position and asked: “A little better?”

Richard: “I don’t know.”

“It's hard to know what to do,” Chris said, somewhat stunned, sitting in a chair by the bed. “When I look at him, I am in wonderment at just how fast it has gone.

“What a wonderful time the two of us have had. And how I will miss him.”

With the right mix of sedatives and pain meds, Richard was calm but alert on Wednesday, his eyes open. He had difficulty speaking, so Chris took his hand.

“Do you know that I love you?” Chris asked. “Squeeze my hand if you can hear me.” Richard squeezed.

“I am right here with you. I am so happy I can be here with you right now.” Hard squeeze.

Richard hadn't eaten since the weekend, and his weight loss had become visible. His skin was cool to the touch as Chris laid a hand on his chest. Chris suddenly looked stricken and turned his head away: “He's never coming home, is he?”

Chris couldn't verbalize his true anguish: I promised him he would die at home. I am failing him.

By Friday, his doubts were gone. Richard was more comfortable here.

Jamie, Richard's favorite home health aide, showed up that afternoon.

“That's Jamie's hand you feel,” Chris told Richard, as Jamie took the dying man's wrinkled, yellowing fingers into his own and started to cry. Another friend, David King, came in bearing a large bouquet.

Jamie eventually had to step into the hall. “Bernie is special. Being with him wasn't a job. It was always just a fun day,” said Jamie, calling Richard by his first name as he wiped his eyes. “I feel like I should be strong for everyone, not a sniveling mess.”

Two days later, Chris and Sissy were finishing lunch in the hospital room, a CD playing in the background. Richard loved opera and classical music, and they were listening to the joyful finale of Gilbert and Sullivan's “The Mikado”:

The threatened cloud has passed away, and fairly shines the dawning day! What though the night may come too soon, we've years and years of afternoon.

From his seat at the table, Chris suddenly looked at the hospital bed across the room. Chris saw Richard shrug and turn his head toward him. At 1:20 p.m. on March 9, 2014, on a sunny Sunday afternoon, Bernard Richard Schiffer died.

Chris rushed to the bed, sobbing, and took Richard's body into his arms.

“Be at peace,” Chris cried while his sister stood behind him, holding him.

A nurse called for a towel, which she rolled up and carefully placed under Richard's jaw, to keep his mouth from sagging open. And there, on the dead man's lips, yes, appeared a very faint smile.

EPILOGUE: A FINAL WISH

Richard made no plans for his funeral. Beyond cremation, his only wish was for his body to be donated for medical research.

As Chris sat with Richard’s body, about an hour after his passing, he was asked to take a call at the nurse’s station from Science Care, an Arizona-based private company.

When they signed their agreement with Science Care a year earlier, Chris and Richard sent the company their legal health care papers, including ones giving Chris the right to make medical decisions for his partner. The representative on the phone, however, told Chris the document had to include a phrase specifically giving him custody of Richard’s remains.

Without that, Science Care would need Richard’s next of kin.

“I am his partner and have his legal power of attorney,” Chris insisted impatiently, while nurses looked on silently. “He has outlived his siblings, his parents, there are no children.”

Three nights later, Science Care declined the donation, giving no reason. Chris had 24 hours to make other arrangements for the body.

Chris vented to his boss, SunServe executive director Mark Ketcham, who intervened. “I was so angry. I never had heard anything like this,” Ketcham said.

In a complete reversal, Science Care accepted Richard’s body.

Science Care called it an unfortunate mix-up, saying it was a result of confusion over documents, according to its director of donor services, Melinda Ellsworth.

Had they been husband and wife, Ellsworth explained, this wouldn’t have happened. Married men and women, in every state, automatically are considered each other’s next of kin.

“The timing, obviously, was horrible,” Ellsworth said. “But when there is confusion, we want to be extra-cautious and step away from the donation.”

Despite the struggles, Chris was grateful.

He had kept his vow.

******

Perhaps the most beautifully eloquent and compassionate telling of the truth of gay realities ever presented.

Thank you, Florida Sun Sentinel

"Fear Eats the Soul