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What's the deal with caregiving? Q&A

November 2015 | Chris MacLellan

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"Somewhere along the line, each one of us is going to be a caregiver in some way, shape or form. Caregiving just happens, one does not prepare to be a family Caregiver..."

Tell us a bit about your background and professional work?

I grew up in St. Louis and I am the youngest of 6 siblings. My educational background is in Social Work and Theology, and right now I am in the midst of completing an MA in Leadership and Communication from Gonzaga, University in Spokane, WA. During my professional career, I have been blessed to have had a variety of leadership positions in and out of the LGBT community. I have always had the ability to interact and get along with people who have diverse views. During my career, I have worked on a crisis hotline and I have worked with high level executives. The key for me is to treat everyone with the utmost and due respect. I even bowled professionally in the mid 80’s, which was quite an experience too! This past year, I went out on my own to start a radio show and write my first book. It was, and still is, a leap of faith that I know will pay off in the long run, because life is about following your dreams! 

You were the subject of a Pulitzer Prize nominated LGBT caregiving story, can you tell us about that?

Goodness, yes...unbelievable! When we were first approached by Diane Lade of the South Florida Sun-Sentinel to do a story on Caregiving and same-sex couples, no one in their wildest imagination would have dreamed that our story would have had such an impact on so many people. The story was published in April of 2014 and has been seen online by over 400,000 people, not to mention the daily subscribers to the Sun-Sentinel. I have heard from people in Europe and Australia and I still get comments about the story today!  

At first, the story was to be a pictorial story, with limited narrative, that certainly is not how it turned out. Soon after we started working with the Sun-Sentinel, my partner, Bernard Richard Schiffer's esophageal cancer reappeared after being dormant for more than two years. After his cancer returned and as the intensity of his care increased, as a same-sex couple, we experienced a couple of problems with the health care system in South Florida. This is when the story shifted from a pictorial story to more of a feature story. The story was supposed to run in December of 2013, however, after Richard completed 6 weeks of radiation treatment in late November, Diane approached us about continuing to follow us on this journey and we agreed. It was at this time when we realized that the story was going to be different than the original plan. I asked Diane if the intention was to follow us until he passed away, which was true. I never read the story until it was published, yet I know the story was compelling and meaningful to so many people because the story demonstrated that love, care and commitment are the same for any two people no matter your gender or orientation. I only asked Diane one thing, to write about us as the loving couple that we were. She far exceeded our expectations.

What inspired you to write “What's The Deal With Caregiving?"

When Richard was first diagnosed with esophageal cancer in 2011, I started a blog called "The Purple Jacket" as an outlet for me, and a way to connect with other family Caregivers for support and encouragement. Richard's oncologist told me in the fall of 2011, that Richard had three to four months to live. We never gave up hope and our motto was "we might have cancer, but cancer does not have us" and I write in my book, "we both decided as long as we could, we were going to enjoy every second, minute, hour, day, month, year we had left."  It is important to share hope!  And it is important to share information too. If there are two things that Caregivers crave the most, its respite care and information!   One of the unique things about being a family Caregiver is that we have an innate ability to understand each other, even when our Caregiving journeys are different. Writing this book is my way of giving back to the vast community of Caregivers which is estimated at 43.5 million in the US alone.  Somewhere along the line, each one of us is going to be a caregiver in some way, shape or form.  Caregiving just happens, one does not prepare to be a family Caregiver; by sharing my experience through my book, I hope I can help others along their very special caregiving journey.

From your experiences, how is LGBT caregiving different than non LGBT caregiving?

I have been asked this question quite a bit over the past year or so and my answer is simply this. "No, not really, we just care for the one we love." In my book, I purposely left out any reference to the LGBT community until the epilogue because I wanted to demonstrate to everyone that Caregiving has no gender or orientation boundaries. Anyone who reads our story knew it was about two men who just happened to love each other. However, I am not naive and do realize that LGBT Caregivers can face an uphill battle when dealing with our health care system, our legal system and more importantly, personal bigotry. Marriage equality does change the playing field as it relates to our health care and our legal system, but legalization of same-sex marriage will never remove personal bigotry. However, that does not mean we stop loving and caring. There is a time and a place for advocacy, but when you are in the midst of caregiving, it is about focusing on the one you care for. If you experience a problem in a hospital or medical setting, be sure to report it to the ombudsman.

What advice do you have for a family caregiver? 

I believe to be entrusted with the care of another human being is one of the greatest honors that can be bestow on us.  Caregiving can be an overwhelming and a very gratifying experience too. In order to be a good and healthy caregiver, you have to take good care of yourself!  Don't let your own health lag, get your regular health care checkups.  Don't be afraid to reach out for help.  Asking for help is a sign of strength, not a sign of weakness!  Create a Care-team to help you and create a Care Plan for you as well.  Creating a care plan for you, the Caregiver, can be as simple as setting a daily intention for yourself. 

That daily intention for yourself can be as simple as taking 5 minutes of quite time, a bike ride, or a massage, something you like to do!    When caring for someone else, #1 priority is your health and well-being. I had to learn the hard way!  I would be remiss if I did not add this.  For every family Caregiver, the stark reality is this:  there is always a beginning and an end to the Caregiving journey, and in most cases, we are not prepared for either of these life events.  When Caregiving happens, surround yourself with good family and friends, take care of yourself, and find a support group either on line or in person or both.  Have honest conversation with your loved one. Have all your legal documents in order and close by, but most importantly, be sure to enjoy "every second, minute, hour, day, month, year together" even when those Caregiving days are difficult, because in the end, the good days will far outweigh the bad ones.

How can visitors to our website learn more about your caregiving journey and work?

Well, there is a couple of ways to do that. My original blog, "The Purple Jacket.com" is the home to all of our caregiving stories, the ones that I have wrote and links to the Sun-Sentinel stories as well. As I write this, I am in the process of creating a new website with my tag line, "The Bow Tie Guy" which will feature my radio show "Healing Ties" a resource section called the "Whole Care Network." Everyone has a story, but not everyone gets a chance to tell their story. On my show, "Healing Ties" we want to hear about your Caregiving story and how you are creating a life to love before, during and after caregiving.

We were fortunate to have our story told and I want to help you share your story, so feel free to contact me at Chris@thepurplejacket.com if you would like to share your story. I hope "The Bow Tie Guy.com" will be up and running sometime in November. In 2016 I start working on my MA thesis which will focus on Caregivers, Stress and its effects in the workplace. We want to bring attention to the CDC as they do not track the effects of Caregivers stress, it is an epidemic.

© 2011-2017 Services and Advocacy for GLBT Elders. All rights reserved. For permission to reprint these articles, or post them online, please e-mail us.

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