You’ll Be Okay!


Love is when the other person’s happiness is more important that your own ~ H. Jackson Brown, Jr

Earlier this month, I was asked by my good friend Denise Brown from Caregiving.com and AfterGiving.com  to share a video for today’s family caregivers that comforts with three words: You’ll be okay.

While creating this video, I learned that I  was comforted, knowing that by sharing my after caregiving journey might help someone else, just like me,  who is also in the grieving and healing process.

Loss is so personal, so real.  No one can really tell us how to deal with the loss of a loved one, yet that old cliché, ‘time does heals all wounds’  is true! However wounds heal at their own pace and in their own time, and in your time…you’ll be Okay…. because it does get better! 

To see my ‘You’ll Be Okay” video for AfterGiving.com, simply click on the heart!

 

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Click on the Heart to see Chris’ ‘You’ll Be OK” Video for AfterGiving.com

 

AfterGiving_Logo2If  you cared for a family member or friend? Please feel free to participate in  AfterGiving.com You’ll Be Okay campaign.

Like me, you will be glad that you did!

 

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Laughter is the best medicine, then and now.


There cannot be a crisis next week. My schedule is already full ~ Henry A. Kissinger

As I continue to grieve and heal, I look back at those moments during our caregiving journey that brought laughter to our hearts.  Richard had such a dry sense of humor and a quick wit and if truth be told, he really did enjoy having his picture taken too.  We used humor and laughter quite bit during our Caregiving journey.  Whether it was a trip out for a delicious scoop of ice cream or a visit to get a hair cut, we tried to inject as much humor into our day as was humanly possible.

IceCream1  IceCream3

 

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We let our humor combat some of those dark days, too.  Richard loved Monty Python, especially ‘Spamalot’…I think we both saw the play three times.  There was a day, early on after the diagnosis where Richard was playing the music from ‘Spamalot’ when all of a sudden the famous song,

Spamalot

Spamalot (Photo credit: Wikipedia)

“He’s Not Dead Yet” started to blare through the Bose speakers.  We both looked at each other in utter amazement; we laughed, we cried, we hugged each other and we laughed some more.  That song became our battle cry, and because of that song, the laughter we shared, provided that spark which enabled Richard to live his life to the fullest.

As our caregiving journey continued to unfold, there was no doubt that we traveled the journey together, side by side, one by one.  We shared in the emotions, we shared in the joy and laughter,  knowing that sorrow was somewhere around the corner.  Yet the sorrow that we shared was the realization that our time together was not going to be as long as we would have wanted it to be.  No more, no less.

The lesson that I’ve learned during our Caregiving journey was that I was  the co-pilot, Richard was the pilot. Richard was  the one going throughSONY DSC the radiation treatments, Richard was  the one taking the medicine; I was there in a supporting role, simply loving, caring and coping as best we could.  As Caregivers, our journey is filled with difficult peaks and valley’s, we try to pave the roads we journey so that the path is as smooth possible, so when there is a problem at hand,  there is always a gentle breeze at our caree’s back.  Caregiving is filled with so many raw emotions, that sometimes we forget that we are on a beautiful, yet difficult journey together.   For Richard and I, humor and laughter helped lightened some very dark days.  For us then, and for me now, laughter is truly the best medicine.  Laughter allows me to grieve and heal.

 

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What Role Does Mindset Play?


Christopher MacLellan:

Please take a moment to read this wonderful blog post about the role of one’s mindset, by Ira Woods. Ira’s wonderful blog, Conscious Departures, is a must read for all Caregivers!

My comments on the Ira’s wonderful post are below.

On my 57th birthday in February of this year, the oncologist told Richard and I that the cancer had spread from his spine to his shoulders, ribs pelvis and his liver. (This was just three months after completing 6 weeks of intensive radiation treatments on his spine) It was a chilling way to start one’s birthday; ‘do you want to continue with more radiation’ asked the oncologist? What do you say at that point? Subsequently, our primary care doctor called (who we simply adore), saddened by the news herself, said ‘we must let him die with dignity.’ Hard conversations to have, knowing that the end is just around the corner.
Richard was always a fighter. Upon the original diagnosis of 3 to 4 months to live in 2011, he beat the odds. Cancer was not the winner, love was the winner.

Richard died peacefully just 19 days after my 57th birthday. Even when he was in hospice, I just figured it was a matter of time before he just got out of bed and would come home with me. I’ve come to realize those thoughts were coming from being his partner, because that is what I miss the most about him not being here with me.

Caregiving is two-fold, especially when you are in a caregiving role for a spouse or partner. In sickness and in health means quite a bit when two people are committed as one. Caregiving goes beyond “making the person feel comfortable.” Caregiving takes a relationship to the next level, it binds souls, it allows you to do things that you never thought you were capable of doing. In sickness and in health, love is a beautiful thing.

I believe when we are in after caregiving is “where our words and mindset play a bigger role than what we think.” When we are in the middle of Caregiving, we are so focused on doing, that we often forget about simply being. When caregiving ends, dealing with the relief that the caregiving is over, along the sadness of the lost, on top of the grief simply to move on is when our words and mindset play a bigger role that what we think.

I know that I have the capacity to be a ‘professional caregiver’- maybe some day I will volunteer in hospice so that I can share our experience which hopefully will be of benefit to others. For me it is OK to admit that I don’t miss the day-to-day chores of caregiving. I don’t miss the trips to Walgreens, coordinating doctors visits, worrying about rides to radiation, etc. Yet if he was sitting right next to me now, I would do it in a moment notice, without a problem, without a complaint. I just own up to the fact that I just miss my best friend, pal and partner. That is how my mindset helps me get through the days.

Originally posted on Conscious Departures:

MindsetI always keep a lookout for good, interesting journalism on end-of-life caregiving and I have to say that the New York Times has really delivered some great articles over the last several years. A few weeks ago another article caught my attention, not about caregiving per se, but about a subject that I believe needs to be part of the caregiving conversation; mindset and health.

The NYT article “What if Age is Nothing But a Mindset?” highlights the work of psychologist Dr. Ellen Langer, a Harvard psychology professor.  Back in the early 1980’s Langer ran a psychology experiment with a group of men, in their seventies, who were in good health but manifesting typical old age deterioration; walking with a cane, arthritis, stooped over, weakness, etc.  At the conclusion of the experiment, five days later, the men had gone through a transformation. “They were suppler, showed greater manual dexterity and sat…

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Healing Ties Radio Show


 CLICK HERE TO LISTEN TO THE SHOW AT 7:00 PM > HEALTH CAFE LIVE.COM 

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 CLICK HERE TO LISTEN TO THE SHOW AT 7:00 PM > HEALTH CAFE LIVE.COM 

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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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2014 Midterm Elections, Get Out The Vote!


Originally posted on WordPress.com News:

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Since 2004, WordPress has set out with an ambitious goal in mind — to democratize publishing and put state-of-the-art tools in front of publishers both large and small across the planet. We believe strongly in this vision because when more people have access to powerful tools on the web, that in-turn empowers them to do great things and publish amazing content. We feel the same way when it comes to democratizing, well, democracy — and in just a few weeks, citizens across the United States will have a unique opportunity to flex their political muscle and vote in the 2014 Midterm Elections.

For our part, we want to provide our US-based users a set of resources to help them make a smart, informed decision when it comes to who they will vote for. We also want to provide a toolkit so that they can get more information on where to…

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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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