Tag Archives: Caregiver

August 27, 2014 · 9:41 am

Advocacy Heals U: Healing Ties of Change

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

To listen to our show, simply click here!

To learn more about Joni Aldrich simply click here!

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

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

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Filed under Caregiving, The Purple Jacket

Tagged as advocacy, Caregiver, Caregiving, iHeart Radio, Joni Aldrich, LGBT Seniors, New Orleans

July 13, 2014 · 12:01 am

Tributes to Those We Love

I am simply honored that Linda asked me to be part of her blog tour! Linda’s new book, ‘A Long and Winding Road: A Caregivers Tale of Life, Love and Chaos’ is simply splendid and now available through Amazon by clicking here!

I’ve followed Linda’s blog for quite some time, and so should you! To visit and follow Linda’s blog ‘Life After Caregiving,’ simply click here!

Caregivers have this innate ability to understand each other, even when our ‘long and winding’ caregiving roads are different. Linda’s guest post, ‘Tributes To Those We Love’ comes at a perfect time for me as I continue to go through the grieving process. Thanks Linda for sharing your wisdom with ‘The Purple Jacket!’ Your guest post touches my heart!

Tributes to Those We Love

Guest Post by Linda Brendle

Recently, I attended an unusual funeral. To be sure, there were some tears and some evidence of sadness, but mostly it was a joyful celebration of a life well lived and a loving tribute to a man who was well loved. One of the first things I noticed was a large floral arrangement that depicted a man on an orange riding lawn mower. Next, I noticed that when the extended family filed into the sanctuary, most of them had on something red.

The daughter of the departed read the eulogy. She began with the traditional statistics—dates of birth, marriage, death, and also the names of survivors. From there, she went on to tell her father’s life story. She told of his spiritual journey from a rough-edged man of the world to a devoted follower of Jesus. Assisted by her daughters and nieces, she told stories that were both funny and touching—and she explained the flower arrangement and the color choices. As his health declined and walking became difficult, her father used his riding mower to keep tabs on his beloved homestead. His orange four-wheeler, as he called the mower, became a personal trademark along with the color red. Red was his favorite color because he said it reminded him of the blood of Jesus.

A celebratory memorial service can be a wonderful tribute, but there are also other ways of expressing love and appreciation to those we value. For centuries artists have paid tribute to people of value through sculpture, painting, and other art forms. Modern technology now allows us to immortalize each other through photography and other visual imagery. In addition to artistic tributes, we can honor those we love with written tributes and what I like to call lifestyle tributes.

My first close encounter with written tributes was several years ago when I was involved in a caregiver support group. At one point, we devoted several meetings to the topic, and I was surprised to discover that written tributes can sometimes be more important to the writer than to the honoree. Since many of our loved ones were afflicted by some sort of dementia, reading or presenting a letter or framed document to them would have been confusing. However, the writing process helped the caregiver focus on the more positive aspects of her loved one. Remembering who the person was before age, infirmity, and dementia turned them into an angry, messy, uncooperative patient sometimes brought a kind of closure and a sense of relief. Often, comfort and healing came with the preparation of a tribute and by sharing it with the group.

Lifestyle tributes can help restore a sense of control that is taken away after years of dealing with uncontrollable situations. Some caregivers have become advocates, either against the disease that took their loved one or, like my host Chris, for causes that were important to them. I’m not much of an activist, but my writing has become, in part, a lifestyle tribute to Mom and Dad. When something I write encourages caregivers and others who are in difficult situations, it seems to give some meaning to the otherwise meaningless struggle that defined the last years of Mom and Dad’s lives.

Tributes can take many forms. Regardless of which form you choose, finding a way to show honor and respect to one you love is an important part of letting go and saying good-bye.

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Tagged as Caregiver, Linda Brendle, love

June 16, 2014 · 10:35 am

Our Follow-Up Story. Life after death: Couple’s story sparks change

Friends of ‘The Purple Jacket’

On Sunday June 15th, the South Florida Sun-Sentinel published a follow-up article: Life after death: Couple’s story sparks change. See the latest chapter (including video) at http://sunsent.nl/LifeAfterDeath. On behalf

of Richard, I want to thank two very special people, Diane Lade and Careline Jean, two terrific journalist from the Sun-Sentinel who told our story in such a loving way. I also want to thank the over 400,000 people who read our first story, In Sickness and In Health A Couples Final Journey in April. I continued to be amazed that our story continues to gain attention world-wide.

Richard and I were just two common, everyday people who came together and just happened to fall in love. As Diane wrote in the first article, “So different, in so many ways ” was accurate. We were different in so many ways and that is what made the love we shared work Richard was a Caregiver himself to his partner Herman for the last six years of Herman’s’ life. When I took on the role of Caregiver for my friend, Father Orlando, Richard was there to help guide us. It was not to long after Father Orlando’s death that we decided to make a life together. Sure, like any couple, we had our ups and downs, that is just human nature. But I’ve never regretted one day of my life with my best friend, pal and partner, Bernard Richard Schiffer. I know he felt the same way, too! While there is a void in my life, I take comfort knowing that he is pain-free. In time, I know that my pain will be softer. While I may not see him, I know that he is with me.

We all come from different faith backgrounds and beliefs, yet one thing that binds all of us together is love. Love, care and commitment are the same for any two people who are joined together as one. Thank you for your continued support and thank you for following our Caregiving Journey.

Life after death: Couple’s story sparks change

By Diane C. Lade Staff writer Sun-Sentinel

June 15, 2014

Portrait at home that was made for Richard’s memorial service. Photos: Carline Jean, Sun-Sentinel Staff Photographer

Cartier gold-rimmed aviator bifocals, classic disco era. A pair of immaculate, brilliant-green Florsheim slipons, men’s size 7, worn once yearly — on St. Patrick’s Day — for more than three decades. Bathrobes still hanging on a hook.

It’s taken Chris MacLellan about three months to prepare himself for this moment, the sorting through of everything that his partner, Bernard Richard Schiffer, left behind when he died March 9 of esophageal cancer at age 83.

There are the memories, unresolved feelings of loss and a sense of emptiness in the Deerfield Beach home they’d shared for 11 years.

There are the surprises, like the handwritten note tucked inside one of Schiffer’s alphabetized address books: “To love someone is to see the face of God.”

“I think Richard intended me to find the note. I think he left it for me,” said MacLellan, 57.

And there’s the legacy. The couple had agreed to let the Sun Sentinel chronicle their final months together in hopes of bringing awareness to the special challenges that lesbian and gay seniors face at the end of life. Since their story, “In Sickness and In Health,“ ran April 13, MacLellan has been overwhelmed by the response.

MacLellan has seen everything from letters of support or condolence to health care institutions pledging policy revisions.

Many who read the couple’s story expressed surprise that health care rights are so connected with marriage rights. Some gay couples said they are now considering marrying, even though they live in states like Florida that do not recognize such unions.

“I appreciate the people who have reached out, the kindness. It’s hard to believe that two ordinary people, who lived in a little house in Deerfield Beach, could make such an impact,” said MacLellan, who works as senior services coordinator for SunServe, a lesbian, gay, bisexual, transgender and questioning social service agency in Wilton Manors.

‘Who are you?’

In the story, MacLellan described rushing Schiffer to Broward Health North’s emergency room in September and being ignored by intake staff while they questioned his partner.

“When we first got to the ER, [the medical staff] paid 100 percent attention to Richard and didn’t really acknowledge my presence,” MacLellan said at the time. “When I tried to speak up, and give them more of the full story about what was happening, they said, ‘Who are you?'”

Speaking to upper level management at Broward Health North. Photos: Carline Jean, Sun-Sentinel Staff Photographer

A day after the story’s publication, MacLellan received a call from Broward Health North CEO Pauline Grant.

She invited MacLellan to speak at the hospital’s next management meeting.

“I was disappointed that we didn’t do a better job,” Grant said. “The emergency department is our front door, and we need to treat all of our families and patients with courtesy and respect.”

On May 15, MacLellan sat in a hospital conference room surrounded by almost 50 doctors, nurses and administrators, calmly retelling his experiences and taking questions. The atmosphere was serious but respectful.

“This is not right, and we are taking it as an opportunity to do better,” Grant said at the meeting.

Now, Broward Health North is working with SunServe to design sensitivity training for hospital employees, starting with those in the emergency room. In the past year, SunServe has been training nurses and health care workers in how to best treat LGBT patients, as well as analyze a facility’s practice for bias — such as using only “single, married and divorced” on records. SunServe has certified two assisted-living centers and a home health agency but had never worked with a hospital before, said the agency’s administrative director, Bryan Wilson.

Photos: Carline Jean Sun-Sentinel Staff Photographer

MacLellan will become one of the program’s trainers this summer, working with Broward Health North and other facilities.

There are few formal initiatives to make the health care system more welcoming to gay and lesbian patients, said Catherine Thurston, senior director of programs for SAGE, a national advocacy organization for LGBT elders that has helped train about 4,000 health care providers nationwide. More facilities and providers are willing to take steps, she added, as they recognize gay and lesbian seniors are among their patients.

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Filed under Caregiving, The Purple Jacket

Tagged as Bernard Richard Schiffer, Broward Health, Caregiver, LGBT, LGBT Caregiver, LGBT Seniors, Sun-Sentinel

April 15, 2014 · 7:39 am

‘In Sickness and In Health’

Greetings Friends,

This past Sunday, the South Florida Sun-Sentinel published a story on Richard and me entitled ‘In Sickness & In Health’…(Click here for a link to the interactive story and video.) When we were approached to do this story, Richard and I thought long and hard about the thought of having two people follow us during some of our most intimate times in our life. Not that our story is any different from those countless number of caregivers out there, however, we both felt that telling the story from the prospective of a LGBT couple would demonstrate that its OK to love who you love.

Now, almost three full days since the article has been published, I am overwhelmed by the support that this article has generated and felt compelled to thank Diane Lade and Carline Jean from the Sun-Sentinel for telling our story is such a beautiful way.

Since ‘TLO’ made his life transition on March 9th, I have spent quite a bit of time listening to a CD entitled “Love Changes Everything” recorded and produced while I as a member of The Gateway Men’s Chorus in 2010. At ‘TLO’ memorial service last week in Fort Lauderdale, I used three songs in this CD as part of his celebration of life. Things That Never Die; Rise Above The Walls; and Somewhere Over The Rainbow. If time would have permitted, I would have also played, In Whatever Time We Have, Who Will Love Me As I Am and Webber Love Trio. I plan to incorporate these songs into TLO’s Celebration of Life service in St. Louis on Sunday April 27.

In one of my last blog post before TLO made is life transition, ‘Approaching The Final Destination’, I wrote, “Cancer is not the winner here, Love is the winner!” Now after reading all the comments on-line and emails that I have received, along with the many phone calls that have come in, I now know why I started to listening again to the CD from the Gateway Men’s Chorus, because “Love Change Everything!”

Click here to read our story and see our video:

In Sickness and in Health: A Couple’s Final Journey

Photos and video by Carline Jean

Story by Diane C. Lade

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

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

March 17, 2014 · 4:47 pm

Everlasting Love: TLO Is At Rest And At Peace

Love is the beauty of the soul ~ Saint Augustine

Bernard Richard Schiffer January 24, 1931 ~ March 9, 2014

The house is quiet; so different, so empty. The beautiful aroma of the stargazer lilies fills the house as one by one, they bloom in their mystical way. Just as the lilies transition from a small bud to a beautiful flower; TLO’s transition into eternal life was just as mystical, and just as beautiful. Holding him in my arms as he took his last breath on Sunday, March 9th at 1:20 pm was surely a paradoxical honor, however we would not have had it any other way.

Our Caregiving journey ended on Sunday, March 9, yet this is not the end of our love, we just get the chance to know and love each other in a different way. Words can’t describe how I feel at this moment, but I take comfort in knowing that he is pain-free and he left this world with a beautiful smile on his face. When I placed his head back down on the pillow after his last breath, I knew that he was in a better place; no stress, no strife, no agony, only peace. I’m sure my faith will grant me those same gifts in the months ahead.

We have been on this Caregiving journey for over two years now, yet it seems like yesterday when I wrote my first post on ‘The Purple Jacket.” Writing proved to be therapeutic for both of us, however, it is strange to realize that the only two posts that we will never get to share with each other is this post and the post from last week, Approaching The Final Destination. I do take comfort in knowing that TLO enjoyed reading about our Caregiving journey as much as I enjoyed writing about it.

The comfort and love I have felt from family and friends over the past week has been heartfelt. May it continue. While on this Caregiving journey, so many people have touched our lives along they way. I am so grateful for all your words of encouragement. Denise Brown from Caregiving.com and her vast network of Caregivers who have been our extended family during our journey, are friends for life. Even in the midst of the intensity of daily Caregiving, Denise and our extended family have been there at a moment’s notice to extend comfort. Word’s can’t describe how wonderful TLO’s primary care physician, Dr. Milica Starcevic of Broward Health, has been to us during our time in her care. Dr. Starcevic’s genuine care and concern for us will always have a special place in my heart. It goes without saying how wonderful the entire staff at Gold Coast Hospice treated us as well. The word that comes directly to mind when thinking about the staff at Gold Coast Hospice is ‘authentic.’ There was not one staff member who walked into our room who was not authentic in their care for both of us. Like ministry, working in Hospice is a special calling, not everyone can do it, but the staff that we met from the administrator down, was just splendid. We never had a worry or concern, the entire Hospice staff honored us and our relationship.

For me, life does move on, just in a different way. As much as the two of us talked about ‘this day,’ one can never prepare for an experience like this. He is forever in my heart, sealed with that lasting smile he left for me when he made his transition. One thing that TLO asked, well…demanded…is that I start to take better care of myself. That is my immediate intention, to create some ‘healing ties’ so that I can become stronger mentally and to get physically fit because on Monday, March 10th I haven’t only started a new chapter in my life, I started a new Caregiving journey as well. That new journey is to be a Caregiver for myself. Many caregivers have this trait where we put our needs second to the needs of our Caree. It is easy to say we are going to take better care of ourselves, but harder to do when you’re in the midst of Caregiving. My advocacy in the days, months and years ahead will focus on the importance of Caregivers taking better care of themselves because it is important not only for the Caregiver, but important for the Caree as well. If I can learn to be half the caregiver to myself as I was to TLO, I think I’ll be in pretty good shape. Following this path allows me to be with him while honoring his wishes for me to take better care of myself: It’s a ‘win/win’ don’t you think?

As I write this on ‘The Purple Jacket”, I do not have any fancy words to share or meaningful slogans to portray, I just want to tell you about a story of love. Two people connecting from different sides of the religious aisle, making a go at life, while forming a meaningful relationship that even to this day, is difficult to describe. TLO might have been slight in stature, but he stood tall in life. With few regrets and quite a bit of joy, TLO lived his life his way. I have learned so much about being strong from him. He was and still is my best friend, pal and partner. My Caregiving cape wanted to fix everything inside of his body; eleven years just whisked by within one week in hospice with me asking that final day…”Lord, can’t I have just one more hour, one more minute to know him..to love him?” As I gently laid his head back on the pillow after he made his transition, I was comforted to see a smile on his face. I knew he was pain free and I knew that he left this world in love and yes, he did beat Cancer!

In the weeks ahead, there will be a few announcements on ‘The Purple Jacket’ about special events that are in the works to celebrate the life of Bernard Richard Schiffer. Our Caregiving journey has been documented over the past seven months with reporters from the South Florida Sun-Sentinel; filled with video and pictures of the two of us, we look forward to sharing that article with you when published is just a few short weeks. I will be writing again in the months ahead, but this space here on ‘The Purple Jacket’ is reserved for my best friend, pal and life partner, Bernard Richard Schiffer for without him, there would be no ‘Purple Jacket!’

But for now, I must take a breath and get some rest.

You see…We Might Have Had Cancer: But Cancer NEVER had us. The thing we have is Love and come to think about it, Love is the most important gift of all!

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Tagged as Caregiver, Caregiver Support, esophagus cancer, Family Caregiver, Gold Coast Hospice, Hospice, LGBT Seniors, TLO

March 8, 2014 · 10:39 am

Approaching The Final Destination

I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love ~ Mother Teresa

With TLO’s recent diagnosis that his cancer has spread to multiple parts of his body, I have to admit this news, along with intense Caregiving over the past month, has put me in a position where I have hit the wall with blogging. While I’ve learned over the past two years that writing about TLO’s bout with esophageal cancer has provided a great deal of comfort for both of us, I now find it interesting that writing about the end stages of our Caregiving journey to be a tad more difficult.

And that is precisely where we are at in our Caregiving journey, we are at the end-stage.

TLO was admitted to Gold Coast Hospice as an inpatient on Monday, March 3rd. We are in a small 8 unit facility under the umbrella of Broward Health. With the mindset that we were going to inpatient care “just for a few days for an evaluation and re-set of his medications;” we have since learned that God and TLO’s body had other plans.

The last thing he said to me on Monday night was…”Please go home and get some rest, I will be OK here and we’ll see each other in the morning.” Reluctantly I agreed with him and headed home. Now knowing that this is going to be our last lucid conversation we have on this journey is fitting, for in his time of strife, his concern and love for me was first and foremost in his mind. We tend to share that similar trait when caring for each other.

TLO has been resting comfortably in our hospice suite since Tuesday; in and out of consciousness, his little body is ravished by cancer. “We don’t know how this man has lived so long with the amount of cancer that is inside of him,” the hospice doctor said to me Friday. “It is only by the grace of God and the love that the two of you have that has kept this man alive.” The Doctor’s words are comforting because it has taken me a few days to get beyond the quick transition from our Monday evening conversation, to finding him resting peacefully since my arrival on Tuesday morning. I suspect that he needed that time alone on Monday night moving into Tuesday morning, so that he could rest and prepare for his journey.

TLO with my sister Sissy, Feb 11, 2014

While in the midst of Caregiving, we often lose sight of what is transpiring right in front of us because we are so intent on service and care. Trips for radiation become routine because that is something that is just a part of our day? With one of my sisters here helping us for the past month, I’ve come to realize that what I might think is a routine day, is totally off the charts by normal standards. I’m sure most family caregivers can get in touch with that.

“If you could look inside his body you would understand what is going on inside of him” was another comment the hospice doctor said to me on Friday. This ‘trip’ has been hard for me to accept because I am so used to him just getting up and continuing on. He is such a fighter! Yet this ‘trip ‘ is just a little bit different because he has acknowledged that he is tried, he has acknowledged that he is ready and from our previous conversations, he knows that I am going to be safe. So in just a few short hours, I have had to learn how to separate my emotions from the reality that we face; TLO was able to do that after I left on Monday night. In fact, he had prepared for this day longer than I have ever realized.

Chris and TLO at SunServe’s Hat and Garden Party 2013

I have had to put into perspective that this journey just did not start on Monday of this week, this journey started over three years ago in a little Greek restaurant in Indianapolis when there was the first indication that something might be wrong with his throat. Through all the tests and tribulations of the last three years, not to mention the original diagnosis of 3 to 4 months to live in 2011, I’d say we have had a pretty darn good run at it. Up until recently, we have had more good days and bad, and along the way on this journey, we have met so many wonderful friends from around the world who simply ask…”How’s TLO”. The Caregiving community is so vast, so strong and so very comforting; Where would we have been without you!

TLO is just mighty fine my friends! He is resting peacefully, and we have been able to communicate through touch and some words. He now gets to run the show and call the shots. Actually, he’s been doing that for quite some time, I’ve just been here proud to be along for the ride. Right now I just want to be his partner, holding him close, caressing and kissing him while telling him that I love him with an everlasting love. His squeeze of my hand gives me strength and helps take my sadness away.

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

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Filed under Caregiving, The Purple Jacket

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

February 13, 2014 · 3:09 pm

Coffee With A Caregiver

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

#CoffeeWithACaregiver

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

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

#CoffeeWithACaregiver 10:00am Friday Feb 14

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

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

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

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

February 6, 2014 · 11:07 am

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

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

Caregiving can sometimes be hard…

…But Hugging a Family Caregiver is easy!

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

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

More Cancer: More Radiation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

January 18, 2014 · 1:38 pm

The Caregiving YoYo

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

How many of you liked to play with a Yo Yo when you were a kid? I would guess that just about everyone has taken their turn, spinning their Yo Yo up and down, controlling the string, holding steady, flipping the device backwards to impress. As I have thought about how our Caregiving journey has begun in 2014, I see a resemblance to that of a Yo Yo: Up and down, backwards and forwards, spinning all around. Unlike a Yo Yo, Caregivers have little, if any control over their Caree’s, health which makes for so much uncertainty when you try to plan ahead.

TLO finished 2013 with a bout of congestive heart failure that kept us from traveling to Florida‘s west coast to visit his family. I could tell leading up to the day we were supposed to leave for Tampa that something different was brewing with his health which necessitated an unplanned trip to his PCP. With a few days of additional diuretics, and a new 6 day steroid pack, TLO was feeling great as we moved into 2014.

Mindful that we have now had two trips derailed by unexpected health calamities late in 2013, we set our sights on going on a week-long cruise starting on Saturday, January 11th. Our travel plans for January 11th ended up being derailed again by another unexpected health calamity. Unable to get out of bed the day before the cruise, and the following two days after the cruise sailed, necessitated an emergency call to his PCP, then followed by another unplanned visit to the doctor’s office. The consensus was that it was unsafe for him to go on the cruise; disappointment does not accurately describe how we both felt when I had to make the call to cancel the cruise. (Yes, I did purchase the insurance!)

With an uncontrollable nose bleed, only exceeded by excruciating back and leg pain necessitated TLO to stay in bed for 3 days; there was sheer puzzlement about what was going on with his body. The pain he was experiencing was different, the nose bleed was troubling, and the concern was mounting. His current pain medications were not providing any relief, “What’s going on here” we both thought! The relief started to slowly take place on Tuesday after an injection administered by his PCP and a new round of steroids which started the following day. However, during the visit with the PCP, the concern is that the Cancer has spread to the bones in his hip and leg; we’ll know more after TLO completes another MRI. As the week progressed, TLO admitted that he had been fearful of dying because of the intensity of his pain and discomfort.

Thankfully, just a few days after the injection and a new round of steroids in his system, we were able to get TLO out of the house for a trial run. As the week progressed, the nose bleed disappeared and his pain is at a manageable level. “I wish I would have felt like this on the day we were supposed to leave for the cruise,” TLO said just last night. ‘I would have wished that, too’ I concurred.

While it may seem easy for some of us to control a Yo Yo by keeping it steady and close to the ground; Caregivers are always rewinding, trying to avoid that uncontrollable spin, looking for that gentle ‘touch’ that will keep our paths steady. That is why I like what Edmond Burke had to say…“You can never plan the future by the past.” If we were to look solely on what was in the past, we would lose hope. Hope is one of those intangible items that makes those difficult Caregiving days plausible. Without hope, there is no planning, no future, no means of survival. Hope brings anticipation, hope brings comfort, hope brings the excitement… Hope is what keeps us going!

TLO Friday, Jan 17

We all know our health is unpredictable. Sure, there are plenty people like ‘TLO’ who have similar health concerns in front of them, but to take away one’s hope is like removing medicine. Without hope, there is no future; without a plan, there is no hope! Yes, we are going to plan another trip soon and when the day arrives for us to leave, we hope that we will be well enough to go. While I’m mindful of the past, I can’t worry about it because by worrying about the past, takes away the hope that we create. Once we lose our hope, we have let the cancer beat us. Because, you see, we might have cancer, but cancer does not have us!