Caregiving in the LGBT Community - Click here for transcript

Christopher MacLellan is the founder of The Whole Care Network and has written a powerful and compelling book, "What's The Deal With Caregiving" that informs caregivers about how to deal with the challenges they will encounter, regardless of sexual orientation, family situation or age.

Chris and his partner, Richard Schiffer were chronicled in a Pulitzer Prize nominated story “In Sickness and In Health: A Couple’s Final Journey” about their journey of caregiving.

 

 

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Frank Samson:                    Welcome to the Aging Boomers. I'm your host, Frank Samson. Of course on our show, we discuss so many of the issues facing boomers, their parents, and what we know of course is an aging population today.

Today we have with us Christopher MacLellan,  who is founder of Whole Care Network and has written a powerful and compelling book 'What's the Deal with Caregiving?' that informs caregivers about how to deal with the challenges they will encounter regardless of sexual orientation, family situation, or age. Chris and his partner Rich Schiffer were chronicled in a Pulitzer Prize-nominated story 'In Sickness and In Health: A Couple's Final Journey' about their journey of caregiving. Chris, thank you so much for joining us on our show. Really appreciate it.

 

Christopher M:                   It's a pleasure to be here with you, Frank. Thanks for the invitation.

 

Frank Samson:                    I understand you do a podcast as well. You've been doing it longer than I have. Tell us about your podcast.

 

Christopher M:                   I host a podcast called Healing Ties. My tagline is The Bowtie Guy and we talk about caregiving from the angle of before, during, and like myself, after caregiving because there's two very common aspects to the profession: There's a beginning and there's an end. In most cases, we're not prepared for either one of those life-changing events. So that's what we end up really talking about and exploring on the Healing Ties podcast.

 

Frank Samson:                    Great. How can people find out about your podcast? Where would they go?

 

Christopher M:                   We're featured on The Whole Care Network, but iTunes, iHeart, Spotify, Google Play. Goodness, and just about any major podcast platform.

 

Frank Samson:                    Wonderful. Well, I hope you'll get some more listeners. I want to just start out because I read your intro, and the fact that you were nominated for a Pulitzer Prize is amazing. What led up to your involvement with that story? Tell us more.

 

Christopher M:                   I appreciate that, Frank. We were approached by a reporter from the South Florida Sun Sentinel, Diane Lade. The Sun Sentinel was interested in doing a caregiving story on same-sex couples, what were the similarities and what were the differences.

 

                                              I had already been blogging about caregiving on my blog, The Purple Jacket, and I'd had a working relationship with the reporter from some other senior care projects. They wanted to do a pictorial story. This was before my partner Richard's cancer had resurfaced, but early on into the process, Richard's cancer did return.

 

                                              Subsequently, on our first visit to the hospital, we had experienced some discrimination as a same-sex couple. That's when the process of the story changed, when the reporters noticed that there was something a little bit bigger here than just same-sex caregiving. It eventually morphed into this story that has been read over 500,000 times by people worldwide.

 

                                              I still get contacts about the story today, as evidenced by you and I chatting about it now. I'm blessed that I have a special memory of my deceased partner Richard, but I also know that the story was successful because it really talked about love, care, and commitment not only as partners but as caregivers as well. That's why the story really connected with so many people.

 

Frank Samson:                    Yeah. It would be, in my opinion, a shame if caregiving was really treated any different for same-sex couples. But the fact that there was a whole story written, I have to believe it is different. Can you tell us more?

 

Christopher M:                   I can, but I do want to start off by saying that when it comes to caregiving, there's really no gender, economic, and orientation boundaries. Caregiving impacts everybody. I think it's important for your listeners to know that our story happened before marriage equality became the law in the United States. During our first visit to the emergency room, we were approached by two doctors who immediately started peppering Richard with rapid-fire questions.

 

I was sitting to the left. I just spoke up and I said, "I might be able to help you out with some information here." They both turned and looked at me and said, "Well, who are you?" A day later, we went down for a nuclear, a test of nuclear medicine. One of the techs there asked me what I was doing there and why I was there assisting Richard. Those are some of the biases that same-sex couples often experience especially in the healthcare setting.

 

                                             While marriage equality has kind of changed that now, there still are some instances where people will be made to feel uncomfortable or be questioned because of people's own personal beliefs and positions that they have on this issue. But when it comes to somebody's health and wellbeing, personal opinions and prejudices really should be put on the side. We should focus on what's best for the person who is in need of help. Thankfully that kind of came through in our story. I'm so grateful to have something like that available to be able to talk about it still to this day.

 

Frank Samson:                    When did that, your story with Richard, when did that come out?

 

Christopher M:                   The story was published in April of 2014 and then nominated in February of 2015 for a Pulitzer Prize. The two reporters followed us for seven months. Originally the piece was supposed to be finished by Christmas of 2013, but Richard's health had deteriorated so much over the Thanksgiving and Christmas holidays that they wanted to continue the story. Actually, they wanted to follow us, they said, "We would like to follow this until Richard makes his transition", which he did.

 

Frank Samson:                    So in those years since it came out, have you seen a change in people's feelings, attitudes?

 

Christopher M:                   For me personally, I have. Maybe I'm a little prejudiced, but I think the story helped build bridges and shows an understanding that, again, love, care, and commitment are the same for any two people no matter what gender. But I'm not naïve. I do understand that there's always going to be personal bigotry that we’re just never going to be able to get beyond.

 

                                              When we're able to look at this issue, especially the caregiving issue through the lens of love, care, and commitment, I think everybody gets that. Everybody wants to have the best care possible for someone that they love, especially when it comes to end of life.

 

Frank Samson:                    Right. What advice would you give to someone who let's say is part of the LGBT community and maybe doesn't have a family member to assist with care, needs care? How do you go about it so you don't get in a situation with prejudices that could have an effect on your care? Any advice you could give to people in that situation?

 

Christopher M:                   Thanks for asking that. In the LGBT community, especially in the senior LGBT community, they often live by themselves, or they're with a family of choice. With that, which was very common whether you're gay or straight, there's so many people out there that don't have their advance directives in order. They don't have their durable power of attorney in place. They don't have their wishes documented so that somebody can advocate for them when they can't advocate for themselves.

 

                                              I think when we're in the middle of caregiving, sometimes we forget that really the most important role of a caregiver is to advocate. But you can't advocate unless you know what the person wants. The role of the advocate is to have those difficult discussions about end of life wishes, and what you want when you're not able to speak for yourself. 

 

                                              If you haven't had your advance directives, power of attorneys, you haven't had those looked at in more than two years, it's time to revisit those. If you don't have one now, get one. You don't want to have these conversations in an ambulance on the way to the hospital. You want to do those important documents now and get them out of the way. It's going to make an already difficult situation just a tad bit easier when you know you have these documents in place.

 

Frank Samson:                    Got it. Good advice for everybody.

 

Christopher M:                   Yeah. Really when you get right down to the day-to-day issues, whether you're gay or straight, they're the same. It's about being proactive in your care. It's about having your documents in order, your advocates in place. Sure there's some nuances for the gay community as it relates to discrimination, but having those documents in place and having them with you especially when you're dealing with healthcare providers that you're not familiar with, that is your ability to really demonstrate to folks that you do have legal rights.

 

                                              As your listeners get a chance to read the story, they'll read that I carried a green folder around with me everywhere I went. That green folder had all of our legal documents in it. I didn't know if I was going to run into somebody, a medical healthcare provider or somebody in the legal department that didn't know us, and I had to be ready to prove that I had the formal legal documents in place to be his advocate. That's not the same for heterosexual couples. They don't have to carry their documents with them.

 

Frank Samson:                    Right. I want to get your opinion on something. I know, at least I believe your discussion's more about caregiving possibly at home.

 

Christopher M:                   Mm-hmm (affirmative).

 

Frank Samson:                    As you know that the business that I've been involved with for many years has been to assist families in helping them find a good assisted living home if they can't safely live at home anymore. Just from my own observation, I haven't seen much concern or prejudice coming from caregivers in that type of a situation as much as from the residents themselves.

 

                                              Have you seen that as well? Do you have any thoughts about that? I think you do a great job of educating caregivers. But how do we educate residents, especially those that might have some dementia issues that could be taking them back? Maybe they were prejudiced at a younger age. As they grew older, they realized that it's wrong. But the dementia's taken them back to where they were. It’s a tough one, I know, but any thoughts?

 

Christopher M:                   It is a tough one. I don't mean to make this very important and difficult question overly simplistic, but my answer somewhat simple in a sense. I think it really just comes down to people getting to know one another face-to-face. If we're going to judge somebody by labels, then we're never going to get beyond that label. If we can sit across the table with somebody and talk about something that they have in common, then really orientation doesn't really play into the conversation.

 

                                             We all have our own likes and dislikes. We all have, for instance, if I'm sitting with somebody that I don't know and we might both be hockey fans. Well, how would I not know that unless I didn't have a conversation? Or if I just thought that if that person's the way he is, I'm not going to talk to them and I'll never get to know them?

 

Frank Samson:                    Right.

 

Christopher M:                   We have to find a way to get beyond the labels and I think that all comes with communication. There's an area of communication that we often forget about. It's called listening. If we could find the time to truly listen, then I think we have a better understanding of where somebody's coming from and who they are.

 

Frank Samson:                    Good advice. I'm definitely interested in learning a little bit more. Now, why don’t you tell us more about your book. The book is called 'What's the Deal with Caregiving?'

 

Christopher M:                   The book, it's not a how-to book. It's not a memoir. It's maybe a little bit of a combination of both. It really is taken from my experience as a caregiver. I talk about some of the things that I did well, some of the things that I would have liked to have done over. I also talk about the importance of self-care, because I think as caregivers learn to advocate for the person that's entrusted in their care, we forget about taking care of ourselves.

 

I talk a lot about my inability to not take good care of myself both physically, spiritually, financially because I was so engrossed in care for somebody else. I forgot to take care of myself. That's a common theme that I hear with caregivers across the board, is that they lose themselves in the midst of caregiving. The book is available on Amazon, it's available on The Whole Care Network, The Purple Jacket. I'm hoping to have a second edition ready in 2019.

 

                                              It was another way for me to give back to the caregiving community. This is another thing that connects you and I, Frank. I believe it's through story sharing that diversity meets the road to combat a common cause. All caregivers have a story. When we share our stories, we also come up with better resources, more trusted resources. That's why we do what we're doing. We want to ensure that people have just a little bit better experience than what we had, and we can make that happen through sharing our own story.

 

Frank Samson:                    That’s great. Now before we wrap up, I have a couple more questions for you. One in particular, I don't want us to run out of time without you telling us a little bit more about your organization, The Whole Care Network. Exactly what do you do? And how can people learn more if they’re interested?

 

Christopher M:                   The Whole Care Network debuted last November. We are a multimedia platform for caregivers to share their stories. One of the unique features of The Whole Care Network is all the podcasters that are on The Whole Care Network right now are new to podcasting, but they have a story to share or a useful product for caregivers.

 

                                              By having more voices on a network that focuses on caregiving, I think it helps caregivers because not everybody is going to connect with me. If you have 10, 15, 20 different people who are sharing their stories or for instance, you can get a much broader picture of all the different ways that caregiving can improve someone’s life. Our website is thewholecarenetwork.com.

You can search out all our shows, you can look at our show hosts. You can see my bio and the link to the Pulitzer Prize-nominated story 'In Sickness and In Health: A Couple's Final Journey' is on my bio as well.

 

Frank Samson:                    I didn't mention that in your intro and I should have, but people will see it. If they're listening to the podcast right now, they see your picture up there with the great bowtie. That's great. Now, I wanted to ask you, what would you have done differently knowing what you know now. Secondly, I would like to hear your advice to someone who's listening who's either about to be a caregiver to a family member or friend or maybe just started to become one

 

Christopher M:                   In response to folks who are about to become a caregiver or who are currently a caregiver, just a couple of things. Be mindful of your self-care. Learn as comfortably as you can that asking for help is not a sign of weakness, it's a sign of strength. We all think that our caregiving cape, we can do all this together. All this by ourselves. But we can't.

 

                                              We need to create a care team. If there was two things that I would like to do over, especially the last six months of Richard's life, I would have reached out for help quicker. I didn't realize how bad I was spiraling down. I thought I could do this all myself: work, take care of him, balance everything.

 

                                              No, you can't do it. All of a sudden your life becomes difficult. If you're mindful that there are people out there that are willing to help and just ask for the help, you're going to be better off in the long run.

 

                                              I mentioned it earlier about there's two aspects to caregiving: There's a beginning and an end and we're not prepared for either one of these events. For me, caregiving ended more than four years ago, but I've had to learn to be a caregiver to myself. With that, just a couple of real quick things here for you. When it does end, it does get better in your own time, but that time's going to be different for everybody.

 

                                              The grieving process is going to be different for everybody. But like a flower that needs to be watered to bloom, you have to find those outlets so that you can bloom again and live your life to the fullest. What I've learned from that experience is that my faith tells me that I will see him again, my mind tells me he's forever pain-free, and my heart tells me he's standing right beside me.

 

                                                     

                                               That allows me to move on with my head held high because I know that in his life transition, two people were impacted in different ways. He got everything that he wanted at his end of life because we had that conversation. I just needed to take better care of myself after, during and after his life transition so I could excel.

Frank Samson:                    Chris MacLellan, thanks so much for joining us. Just very enlightening and I appreciate you taking the time. Good luck with your podcast. Check out his website thewholecarenetwork.com and hopefully pick up his book 'What's the Deal with Caregiving?' Chris, thank you so much for joining us on The Aging Boomers.

Christopher M:                   It's been a pleasure, Frank. Thank you.

Frank Samson:                    I want to thank everybody out there for joining us as well. Just be safe out there and we'll talk to y'all soon.