Tag Archives: LGBT Caregivers

Listen In Love


The First Duty Of Love Is To Listen.

3X6A0537

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.

transactlantic

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.  

3 Comments

Filed under Caregiving, The Purple Jacket

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

frontpage

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.

2 Comments

Filed under Caregiving, The Purple Jacket

‘Things That Never Die’


3X6A0511

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

 

 

 

Enhanced by Zemanta

4 Comments

Filed under Caregiving, The Purple Jacket

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!

TLO Rest

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! 

 

 

Enhanced by Zemanta

8 Comments

Filed under Caregiving, The Purple Jacket

It’s Never Too Late To Start Over


We may encounter many defeats, but we must not be defeated!~Maya Angelou

TLO_Certificate

I graduated from radiation treatments!

Our second bout of Cancer started to unfold when we were discharged from Imperial Point Medical Center in early October with the news that TLO’s cancer had entered his spine.   It was a somber drive home that warm Saturday afternoon knowing that three tumors were lurking on his spine;  the added ordeal of facing more radiation just exasperated the diagnosis. Those first few days home after the diagnosis  was quite difficult… For both of us.  I’m still not sure what was worse; the revelation of what was inside of him, or the anticipation of starting the rigorous treatments that were in front of us?

Caregivers know that through all the turmoil, we hope for a ray of light toHoldTight shine through our Caregiving day, to take the edge off so to speak.  Our ray of light happened this week as TLO completed his six weeks of radiation treatments.   Those six weeks were like riding a roller coaster, or maybe one of those amusement rides that spin you upside-down.  (I always hated the ones that went upside-down)  It is hard to get a handle on your day when your day is in constant motion.

Never too LateDuring these last six weeks, there has never been two days alike; Cancer kind of does that, we’ve learned! We wake up each day not knowing how the day will enfold; Cancer kind of does that, we’ve learned! We look back at these past six weeks and wonder, “how did we get through this mess;” Cancer kind of does that, we’ve learned! We really don’t know what lies ahead of us; Cancer kind of does that, We’ve learned!  It’s never too late to start your day over;  Cancer kind of does that, we’ve learned!

Completing radiation treatments is  significant because it allows us to start Certificate side (2)over again.  There are no more treatments, nothing else to do other than to let the healing process start!     Sure, there will be a follow-up  MRI and CT scan to see the results of the radiation.  However, we have no control over what those results will entail.  We can only control how we feel, and how we will deal with those results.  

There is no doubt that this round  radiation has taken its toll on TLO.  For him, dealing with going to radiation on a daily basis is more difficult than dealing with the fact that he has cancer.    I find that revelation difficult to understand, but so thought-provoking!  It’s important to remember that we are wearing different shoes on this journey.

022

 As we move into a different phase of our journey, we continue to hope for a gentle breeze at our back.  We’ve done what we could do to combat the tumors, we’ve made the proper adjustments to our care team and we are thankful for the great staff at the South Florida Radiation Oncology in Coconut Creek and Emerald Elite Senior Home Health Care in Wilton Manors .  I’m grateful to the Executive Director at SunServe, Mark Ketcham and my colleagues at work for their support and understanding.  Our extended family at Caregiving.com, where would we be without you?

As a Caregiver, we often think that we can go at it alone, that we don’t need any help.   While we have the ability to start our day over, it makes it easier to start our Caregiving day over when we have passengers to help  guide us through the journey.  I’m thankful for our Care Team!

You see…We Might Have Cancer, But Cancer Does Not Have Us! 

cjmbtr (1)

Be A Healthy Caregiver’ is on hiatus until January 2014 while ‘TLO’ is undergoing radiation treatments.  To listen to  archived episodes of our show, simply click here! 

Christopher MacLellan is a Certified Senior Advisor, the coordinator of senior services for SunServe Social Services and the host of ‘Be A Healthy Caregiver’ on Blog Talk Radio.  ©ThePurpleJacket

 

5 Comments

Filed under Caregiving, The Purple Jacket

Tuesday on ‘Be A Healthy Caregiver’: LGBT Housing


be-healthy

On Tuesday, May 14th at 1:00 pm (est) we welcome Hilary Meyer, Director of the National Resource Center on LGBT Aging and Tom Duffy from Secret Gardens to our ‘Be A Healthy Caregiver’ show on Blog Talk Radio  You can access the show live by simply clicking here

logo sage_logo

While trends in our society are shifting in a positive direction for equality, LGBT Seniors are still struggling with issues relating to affordable housing and how to safely aging in place.  As the Director of the National Resource Center on LGBT Aging, Hilary Meyer has a keen understanding of these issues facing LGBT Seniors.  And Tom Duffy from Secret Gardens, has just opened an LGBT focused independent living center in Wilton Manors, Florida  were LGBT seniors can feel safe in their surroundings.

Secret_Gard_PC_3_Page_1

 

Secret_Gard_PC_3_Page_2

Through our conversation today on issues facing LGBT Seniors, Hiliary and Tom will help us all learn how to  ‘Be A Healthy Caregiver!’

To listen live, simply click here! 

cjmbtr (1)

Can’t listen to our show live…NO Worries!!!  All our episodes of ‘Be A Healthy Caregiver are archived for your listening convenience by clicking here! 

Leave a comment

Filed under Caregiving, The Purple Jacket

‘I Do Not Need Any Help…I Have A StepLadder!’


Health is the greatest gift, contentment the greatest wealth, faithfulness the best relationship. Buddha

As Caregivers, more often than not, we pay better attention to the health and well-being of our caree rather than to ourselves; It just goes with the territory. Just the other day, I found ‘The Little One’ pulling out the stepladder to use to reach the upper cabinets (after all he is 5’5”) in our kitchen. Being the over protective caregiver that I am, I immediately balked at his use of the ladder. “What are you doing,” I said! “What does it look like I am doing, putting away the groceries.” He responded. “Not with that ladder you’re not.” The conversation deteriorated from there…

Safety is a big concern for all of us. One harmless fall can put an entire series of health concerns into play. Yet there is a delicate balance between independence and common sense.

Dr. Starcevic with ‘The Little One’

On Friday, ‘The Little One’ had his quarterly check up with his primary care physician, Dr. Starcevic. Dr. Starcevic continues to be amazed at ‘The Little One’s’ progress and stated…”We should review the pathology report because this is truly amazing!” I was gratified when she spoke about how important I was in the progress that he has made over the past year. Of course, he agreed with her 100%. This conversation really helped boost my ego and confidence.

‘The Little One’ highly respects Dr. Starcevic, and I do too. When ‘The Little One’ was in the middle of his chemo and radiation treatments last year, she was the one who determined that he needed to be in the hospital. Not only did she have him admitted, she put him in a wheel chair and took him to the hospital herself! We will never forget that act of kindness on her part.

The Famous Stepladder

During the conversation with Dr. Starcevic, ‘The Little One’ mentioned that he is “extra careful when he walks because he does not want to fall down and break a hip.” As I listened attentively to his words, I could not resist jumping in. “Why don’t you tell Dr. Starcevic how you like to get on stepladders, “ I said! They both turned to me (with different expressions on their face of course) at the same time: then the real conversation ensued about ‘The Little One’s’ safety. The conversation was lively and to the point; it is harder for ‘The Little One’ to dispute Dr. Starcevic than it is me!

Every caregiver wants to ensure that their caree is 100% safe. While I know I cannot be at home 24/7, I also know that I cannot control what ‘The Little One’ does when I am not home. (Like I can really control him when I am at home!) I can hear ‘The Little One’ saying, ‘I can put those cans on that top shelf, I’ve been doing it this way my entire life;’ I get that response and respect it too.

Even as we age, each one of us has that indestructible opinion of ourselves. We do not want to lose our independence, but we also do not want to lose our independence through a fall that is preventable. Sometimes we just need a different messenger, and sometimes we have to realize that our message needs to be tapered. In this case, we learned the meaning of both. Thank goodness for the wonderful work of Dr. Starcevic!

You see…We might have Cancer…But Cancer does not have us!

5 Comments

Filed under Caregiving, The Purple Jacket

“I’m between 81 and Death!”


If I had no sense of humor, I would long ago have committed suicide.
Mahatma Gandhi

We are three weeks into our FitPass program with Caregiving.com and the group is progressing along just fine. There are so many reasons why we put on weight; stress, poor choices, not seeing food as fuel is just a few of the topics that come up during our FitPass discussions on Monday night. While I have a long way to go in order to sort out why I have put on weight, I am pleased with the loss of 8lbs since we’ve started this program.

It just so happened that the ‘The Little One‘ had his own discussion on health and fitness with a nurse who came to visit him on Monday in our home. This visit was a courtesy of one of the many programs that his insurance plan has for him in Florida. (Hence another reason to be here full-time) While I missed the visit today, I certainly heard about it during our dinner conversation.

“I was given all these instructions on what I should be eating and how I should be eating. While I appreciated the concern and the information I was given, I just looked at her and said...I’m between 81 and death, at this point in my life and what I have been through this past year, what difference does it really make what I eat?” I’m sure he said this in a polite tone.

I mentioned ‘The Little One’s conversation this evening during our FitPass conference call and made the comment, “I’m the one who should have had that conversation today as it is my eating habits and fitness that is out of whack.”

The common denominator here is simple, it is about the perception of one’s quality of life.

‘The Little One’ can never be accused of not having a realistic view of his condition. Yesterday is gone — today is here — not sure about tomorrow. He has admirably lived by this motto for quite some time now. (Remember, he was given 3-4 months to live last October!) Like many people who are diagnosed with a life threatening illness, it’s not uncommon for a conversation to take place about Quality of Life. Quality of Life will have a different meaning for each one each of us. ‘The Little One’ has outlived everyone’s expectations; he is cognizant of what quality of life means to him. Who is it for anyone else to argue with him on this point? At this time in his life, eating one less scoop of ice cream or having one less helping of milk chocolate raisins is not going to do anything for him other than deprive him of a pleasure. I’d say ‘go for it and enjoy!’

Photo Credit: The Purple Jacket

The more I thought about his visit with the nurse, and the more I talked about it with our FitPass group, I realized that I have lost sight of what quality of life means to me. You see, as a Caregiver we get so wrapped up in the needs of our caree, we often forget about our own needs. That extra scoop of ice cream sure feels good when you’ve had a stressful day of Caregiving, work, life etc. However, that does not mean you have to have that extra scoop of ice cream every night!

Photo Credit: Wayne Dyer

In order to make healthy choices, we have to be aware of our options. With that, we have to recognize and own what quality of life means to us as an individual . For ‘The Little One’ that extra scoop of ice cream signifies an accomplishment and truly is a part of his quality of life; he has earned it! For me, my quality of life can not be tied solely to his, for in that, I lose my sense of self. (I.e. Weight Gain) How can I be a good caregiver if I am not taking care of myself?

While the nurse that visited our home on Monday was not there to see me, in reality the message she left…was solely for me!

You see…We might have Cancer…But Cancer does not have us!

3 Comments

Filed under Caregiving, The Purple Jacket

LGBT Aging through the lens of Gen Silent


It’s never too late to give up our prejudices.Henry David Thoreau

You might remember an earlier blog post where I talked about a question that was posed to me by a good (straight) friend of mine, his question was simple: ‘What’s different about LGBT Caregiving.  In that blog post, I wrote  “ A very profound question that is easy to answer, yet difficult to explain.   “Caregiving in and of itself is the same for every couple, you simply care for the one you love.   The difference for the LGBT caregiver is when we have to interact with systems outside of our home that are out of our control.”

As an LGBT caregiver and advocate, my response to that important question pales in comparisons to the magnificent and gut wrenching documentary, Gen Silent.     The real life stories of love, commitment, discernment, hope, happiness and despair told through the lens of “Gen Silent” are gut wrenching, yet important for all audiences in order to understand the plight of LGBT seniors in America. Producer/Director Stu Maddux does a splendid job in piecing together these LGBT pioneers who helped paved the way for what we know today as Gay Pride.

We should all be indebted to them.  

Throughout their life, LGBT seniors have experienced discrimination solely for being ‘different’. LGBT Seniors are one of the most underserved communities in our nation.  Today’s LGBT seniors grew up in a time where they were told that homosexuality was not only a mental illness, but also a crime!

Systems can be unfair, yet pioneers like those in this marvelous film are the ones who help foster change.   Out of the shadows and into our hearts, this documentary provides  viewers with critical examples of why NO senior should be left behind.  This issue is not a local issue, it is a universal issue.  Somewhere along the line in our discussion about critical issues that face our society, we have lost the ability to look and talk about these issues empathically.

No matter what side of the fence you are on in regards to gay marriage; Equality in not a privilege, it is a basic human right.  Through the lens of Gen Silent” you will see the true meaning of love and why equality and equal rights are so important in our society today because everyone deserves a perfect sunset to their life.

Kudo’s to Stu Maddux and the staff at the LGBT Aging Project for a job well done.   Thank You to Ellen Wender of Creative Arts Enterprises and Treece Financial Group for taking the initiative to bring this documentary to South Florida.  Thank You to Diane Lade of the Sun-Sentinel for writing such a superb article on “Gen Silent” how nursing homes can push gay seniors back into the closet.

For information on how you can bring “Gen Silent” to your community, click here to visit the films website and ‘like’ them on Facebook, too!

To learn how your agency can develop LGBT-sensitive policies, train staff,  create welcoming environments, and receive CEU’s visit SunServe Social Services.

“We might have cancer…but cancer does not have us!”

5 Comments

Filed under Caregiving, The Purple Jacket

LGBT Caregiving Blog Series


 

I was privileged to have been had one of my blog post published recently  in the  American Society of Aging; LGBTcaregiving section. ASA’s Aging Issues Network (LAIN) is a great source for LGBT Caregiving and Caregivers.

‘Two Relationships in One’  

To be entrusted with the care of another human being is one of the greatest honors that can be bestowed on you.  It takes on meaning that is beyond approach.  New parents have nine months to prepare for the responsibility. Doctors and nurses undergo years of rigorous training for the work that they do.  But caregivers can find themselves thrust suddenly into roles that they do not choose when called to care for a partner, spouse or loved one after a diagnosis or an accident.

At a moment’s notice you become a caregiver, without any warning or time to think things through. You feel like you have no idea of what you are supposed to do, so you do your best, as you follow your instincts and common sense. You embrace the new reality. You simply care for the one you love.

When you become a caregiver for your life partner, a new and uncharted realm opens up.  Two distinct relationships must now be blended into one. The familiar partner from the past remains and is always present.  But now there is someone different on the scene – someone with a significant illness.

Suddenly, two people sharing a life together will need to face challenges that cannot be left unattended.  A whole set of new and hard-core emotions are likely to intrude on the relationship. Worry, detachment, mortality, anger, fear of abandonment and having to live life alone, to name just a few, begin to intertwine with the idiosyncrasies of your personal dynamics. They can lurk in a caregiver’s mind when faced with a life-and-relationship-altering illness in your partner.

Care giving is an intense experience that asks you to surrender yourself for the needs of someone else.   Often times you have to give up the things you love in order to care for the one you love.  Even though it may feel like a hardship, you make the choice because you know that it is what love and commitment is all about.  Yet it is not that simple, because care giving can be an emotional, physical, and interpersonal roller coaster that is both tremendously rewarding and frustrating. These emotions can surely test even the best communication and trust in a relationship.  The common denominator in the blending of these two relationships is communication.

Communication is a funny thing; just like relationships.  It is funny how the two go hand in hand.  Successful relationships are built on strong communication and trust.    It is through honest communication that the true essence of a partnership is revealed.  This does not change when you add the role of caregiver to the mix.  Communication has to be the focal point for conveying the wants and needs of the one who is ill, and this must be accomplished without losing the identity of either the partnership or the caregiver.  The term “delicate balance” takes on a whole new meaning.

Frequently reviewing and maintaining clarity in your roles becomes crucial so that your judgment and decision-making skills are based on sound facts instead of raw emotions. How much can the mind and body take when faced with so many changes in such a short period?  I think that really depends on the couple’s ability to safely, clearly, and honestly communicate their wants, needs, and desires as indicated by the partner’s health needs first and the personal relationship second.

While I have no doubt that caring for my partner (who has been diagnosed with esophageal cancer) has strengthened our relationship, it has changed our relationship at times, too.  I have seen someone who was firmly independent become dependent in certain areas of life that have been difficult for him to accept.   Stepping outside one’s comfort zone and asking for assistance with mundane everyday chores adds stress to both parties.  That is undeniable!

Caregivers often become the voice for the one who is ill. As caregivers, we have to be mindful that we are in a supporting role;   caregivers are the advocates, not the “deciders”!  In this supporting role, we must remember that what we want for our loved one may not necessarily be what the loved one wants.  What a slippery slope this becomes when the person you are caring for is your life partner!

As part of an LGBT intergenerational couple, I have, on occasion, observed discrimination in our health care system. Here again, personal political preferences may need to be deferred in favor of pragmatism because I am in the role of caregiver.  Successfully addressing and focusing solely on the needs of my partner is paramount.  There will be plenty of time to step up and do what is politically right once I have insured his proper care.

Life’s journeys are not often driven on smooth roads, but we can always hope for a gentle wind at our backs.  That gentle wind is always fortified by love, trust, and commitment.  Come to think about it, aren’t all relationships manifested in this way?

We might have cancer, but cancer does not have us!” 

Below are links to other LGBT Caregiving articles which are worth your read.  I am honored to be a small part of this wonderful group.  I encourage you to bookmark American Society on Aging, especially their LGBT Caregiving Blog Series.  (The ASA logo above will take you to the ASA website)

Finding Pride in Caring: LGBT Caregivers Answer the Call from the Community
By Holly Deni

Sharing Care an Energizing Experience
By Nancy Bereano

Transcending Business as Usual
By Paul R. Blom

Complications of Transgender Caregiving
By Julie Ellingson

 

7 Comments

Filed under Caregiving, The Purple Jacket

%d bloggers like this: