ALISHA: Whenever someone asks me who I am, I immediately start to sweat and blame Jack Nicholson. I can’t get his character, Dr. Buddy Rydell in the film ‘Anger Management’, out of my mind as he presses Adam Sandler’s character to give more reflective statements than those he is offering when answering that question. So, I’ll start with saying that I am already sweating. I am an insatiably curious person. About everything. You, me, your great grandma Ethel, the stars, the animal kingdom, how we all ended up where we are today, why cats operate the way they do, and literally most everything else. Except cars. I glaze over immediately.

I am a creative, old soul who is impassioned by lived story, and one who finds meaning in how our stories intertwine. By day, I work as a mental health and equine therapist which lets me nerd out on my love for animals and story. Music is another important part of me, and I love singing, playing the guitar, and musical theater with a side of tap dancing. I am a fiercely loyal partner, friend, aunt, sister, and cat mom who will always enjoy a good pun and believes in the healing powers of kindness and redemption.

My book Four Eyes: A Memoir of a Millenial Caregiver was born out of the hardest years in my life after becoming an adult orphan at age 34. My parents passed away six weeks apart from each other in 2016 after years of battling chronic illness. My story involves my struggle with part-time caregiving while also pursuing my own life path and searching for any balance I could find between the two. It is a story of fight, struggle, and coming to terms with mystery without not knowing any solid answers. It chronicles my parents’ journeys through their illnesses and the subsequent roller coaster of emotions that comes with watching your loved ones slowly fade away. Becoming an orphan as a young adult is a privileged position, as many people lose their parents much earlier in life, yet it is also very isolating. This book was also written in recognition of all of the millennial caregivers at the crossroads of finding themselves amidst caring for others.

Lastly, my book details the gift of organ donation that my parents gave through their four eyes. Organ donation is a personal choice and a decision to be respected, no matter the decision. If chosen, it is a decision that can change lives in a very powerful way. Through their donations, my parents impacted the lives of four others and were able to live on through their legacy of kindness, giving of self for others, and redemption. Their selfless act inspired me to expand my faith, find the meaning in my pain, and make peace with accepting the unacceptable in their deaths. What started out as a cathartic writing exercise for me has turned into a lifeline of meaning-making and choosing to grow into my new identity as a parentless young adult despite the invitation of grief and pain to just give up. I am proud of my parents’ decisions and will advocate for organ donation in honor of them for the rest of my days. My dad always told me that “life is hard, and you don’t have to do it alone.” I believe him, and am so grateful that I had the chance to take him and my mom up on that offer. I want to carry that invitation on to others through my story who may find themselves in similar caregiving shoes.

NANCIE: I am now a full-time writer after a hodgepodge career as a generalist. I worked at many things during my life in response to other’s ideas for me or due to circumstances in which I found myself. During the last twenty years of my so-called career, I worked in online media. I created content and oversaw community (social media) for large sites like washingtonpost.com and AOL/Time Warner. When I think about it now, it was the work of managing relationships. The relationship between editorial content, technology, and user responses to it. The relationship between a site and its audience. Sometimes, I think I was more successful at managing relationships at work than in my private life. Writing my first book touched on that and was a natural segue. However, I didn’t realize it until later.

Thirteen years ago, I–then a sixty-something-year-old woman–moved from the Washington, DC area where I’d lived all my married lives (yes, that’s lives) to the Eastern Shore of Maryland to be near my retired, career military officer, 80-something-year-old-father. Two of my girls had married and had families of their own. My youngest was in college. I was writing and consulting by then, so I could work from anywhere. Since I had not been able to be with or help care for my mother as much as I’d have liked to while she was ill and during the time she was dying, I thought it would be a great idea to move closer to Dad so I could be more available if and when he needed me. It turned out that I needed him more than he needed me.

Tea with Dad, Finding Myself in My Father’s Life is a memoir about the personal circumstances that propelled my move into my Dad’s home about seven years ago, the realization that we didn’t know as much about one another as we thought we did, and how over cups of tea each afternoon or during afternoon drives, we re-established our relationship by sharing stories. I learned things I couldn’t have known about him, my mother, and our family. I tell people now that as our relationship evolved that my own personal narrative did as well. And it needed a huge rewrite. As I edited that rewrite, I came to see the parts I played in my own life and learned to assign accountability where it needed to be. Sometimes with others. A lot of times with myself.

If there is anything I need readers to know about the book, it’s this. We all have baggage. No matter who moves in with whom, the baggage comes with us. It’s easier to sort, toss, or giveaway before the big move so that there is less to unpack when we get there. I hope the book points out that we do not know everything we need to know about one another. We make a lot of assumptions. It’s possible to have those difficult, poignant, sad, jarring, and sometimes funny conversations before the time we may have to become family caregivers. Taking the risk to have those conversations and unpack any of the remaining boxes together can lead to the mutual respect and trust necessary to provide care and accept it. 

MIKE: I’m Mike Keren. I am currently a clinical psychologist in New Jersey, but prior to this I had been working as a psychologist in numerous forensic institutions including a women’s prison, a maximum security facility and a sex offender treatment program. My husband Tom and I split our time between New Jersey and the mountains of Pennsylvania. We have two dogs, Carley and Chelsea, who basically control our lives. I had to get their permission to do this interview.

My book Four Funerals, No Marriage: A Memoir focuses on a three-year block of time during which I was trying to change careers but got sidetracked by caregiving. It opens on the weekend during which my parents had come north from their home in North Carolina to search for a home closer to Tom and I. Within days of their arrival my dad had a stroke and my mom “another” heart attack.

Simultaneously, we had already been attending to Tom’s mother who was struggling with the side effects of chemotherapy after a diagnosis of uterine cancer. While caregiving was not new to us, we had both come of age during the early days of the AIDS pandemic and had assisted in the care of his father after he suffered a traumatic brain injury, never had we dealt with so much, so fast. The book explores questions of love and duty, family dynamics, as well as offering commentary on the profit driven health care delivery system today.

MIKE: I don’t think I’ve always wanted to be a writer, but I did always want to make a mark on the world, make a difference and leave something tangible behind. When I first became a psychologist, I did write for professional publication and often did presentations. I enjoyed it, but never really thought about writing for pleasure. My current writing grew out of my attempts to break into stand-up comedy. I loved performing and enjoyed the challenges of writing new material, but I absolutely grew weary of the “open mic” scene. As I was in my late 40s, turning 50, when I was trying to break in, I spent many an hour waiting for my turn at open mics listening to adolescent and young adult boys talk about drinking and fucking. The scene was filled with misogyny, racism, sexism and homophobia. Many an evening I would do my material, which came from my life as a gay man, only to be followed by another comic who would rile up the crowd with their homophobic diatribes. I often would have friends walk me to my car because I feared for my safety. When I finally gave up the dream, I needed a new direction for my creativity and creative writing provided it. I started taking courses in memoir. My initial plan had been to write about my experiences as a patient as I had recently been treated for prostate cancer, but what poured out of me was a memoir about caregiving to my parents and in-laws. It was a venue for all my dark humor, my loving memories, and my familial frustrations. I still intend to write the cancer memoir, in fact, I see my current memoir as the first of a trilogy. Four Funerals, No Marriage looks at the world of healthcare from the perspective of a familial caregiver. The cancer memoir, tentatively titled The Love Button looks at health care from the perspective of the patient and after I retire, I intend to write a memoir about my experiences of healthcare as a provider.

ALISHA: As a kid, I lived in books. I would read anywhere and everywhere, and I spent most of the summers in the local library scouting out the newest releases and exciting worlds within. You can imagine how popular this made me as a kid! My best friends were books and animals, and early on, they inspired me to think about life through a storied lens. My desire to write was born the more I felt that I wanted to create worlds all my own. Writing was a way to dream, adventure, and experience different emotions and ideas that could float me to other places in no time. I loved it. As I got older, life naturally ebbed and flowed into and out of hard things. I was a deep feeler, and I often felt emotions for longer and more intensely than others, which often left me confused. I managed this mostly through journaling, and through this practice, I learned how cathartic writing was/is for me. What I know now is that I am a highly sensitive person, and writing is a wonderful way for me to process all of the feels.

I pursued writing as my first major in college, but ended up with a TV News and Video Communication degree where I looked at writing stories primarily through the lens of video editing. My favorite things to edit were human interest pieces, and editing felt a lot like writing. Now working as a mental health therapist, one of my favorite theories that I often use is Narrative therapy, which metaphorically encourages folks to write the future that they would like to see. It was a combination of all of this that led me to write Four Eyes. I needed the catharsis of this massive experience that I was storing in my body and brain to be released. I love expressing my thoughts in writing, and I learned so much more about myself as I wrote the account of what happened to my family and I over those five years of my parents’ illnesses. I needed my parents to be remembered, and my journey with caregiving to be documented in a way that grounded me, as I spent a lot of time not accepting that this was my life for five years. This particular book was born out of caregiving and witnessing the decline of so many once knowns, and despite my admiration for writing over the years, being a published author was something I never really imagined being a reality. Now that it is however, I am beyond grateful for the opportunity to share my story with the world. Looking forward, I would love to continue to write more, however that manifests itself. This book was very difficult to write, so I think the next one will need to be a bit easier on the soul-wrenching for me to make it through! Perhaps I will tackle the history of llamas or latch hook rugs. Ha!

NANCIE: I wrote from the time I learned to write. As a child living the peripatetic Military Brat life I wrote letters to my grandparents, cousins, and the friends I’d left behind at our last station. I was a solitary child–especially when we first arrived at a new place and until I felt settled, which was usually about six months in so I also kept a diary. In school, I wrote poems and short stories (many more than were assigned to me by my teachers). Though living a writer’s life or having the career of a writer intrigued me, but I was never really serious about writing as anything but something I did on the side. Writing helped me explain the world and myself to myself. Writing a book or books was on my bucket list for later in life, when I had nothing else to do (when is that?) and I could focus on it. I didn’t write Tea with Dad as an outgrowth of my caregiving role because I wrote it during a time when one could say my father was caring for me. The book is almost a preface to the reversal in roles that loomed on the horizon. As I wrote Tea with Dad I learned more about who I am, what shaped me, explored the road bumps in my journey toward knowing Dad better, and confronted some of the personal concerns and fears I had about my future as his caregiver–as well as whether he’d accept me as one. Writing it helped me determine the work I needed to do before being confronted with the reality of providing care for my father. It helped me get ready for it. 

NANCIE: This answer is easy for me. I’ve thought about it a lot. I was surprised becoming a caregiver wasn’t as easy as turning on a light switch. You aren’t just the adult child one day and the caregiver the next. I have a lot of background and experience in caring for human beings. I was a nursing student (for a short time), a crisis counselor, a member of a local rescue squad, a Girl Scout Troop Leader, and the mother of three children. All of this provided experience dealing with situations requiring basic first aid to assisting with more serious situations. I observed my father caring for my terminally ill mother. I felt confident that I was prepared–technically. But, I was and still am, even now, surprised by what I don’t know and how afraid I won’t know what I need to know at any given time. I still second-guess myself.

Also, I was so concerned about the mechanics of caregiving (prescriptions, appointment scheduling, what walker is better than another, which blood pressure cuff can he work and read himself, if necessary) that I often forgot the relationship side of things—the human nature in the caregiver-cared for relationship. I was afraid to insist that my father acknowledge my need to be involved in his doctors’ appointments, as the point person when he was admitted to the hospital, and when I knew I needed for him to give me–as well as my brother–authorization to speak for him if he was unable to speak for himself or correct him if his information was inaccurate when he was not able to speak for himself. I should not have been surprised. Any kinks in our lifelong personal relationship revealed themselves exponentially in this new one. How in the world did I think it would be easier for me to assume a position of confident knowledge, authority, or even partnership with my father when I had not felt comfortable doing it my whole life? There was work that had to be done on our relationship first. When I speak to other caregivers or read about their fears and frustrations, I realize from my own experience that you do not assume the role of caregiving. You must grow into it and see the person you care for as a human being, not just a parent or other family member. It’s been a blessing for me to have moved in with dad while he was still very independent and have the luxury of getting to know him so well. Understanding who he is, why he reacts the way he does, why I react to his reactions instead of responding in constructive ways to one another has been a learning process. Though It’s been very rocky at times, each instance when my father looks at me because he cannot hear or does not understand what has been said to him, when he points to me and says, “Tell my daughter. She takes care of me.”, and those times I step up, don’t look at him first to see if it’s okay for me to say something to his physician, I feel solid in the partnership we’re forming.

MIKE: Personally, I resonated in many ways with Alisha’s response and her story, but I don’t know if I would use the term “soul wrenching” to describe the experience for me. My own journey, though certainly difficult, was both character strengthening, insight building and incredibly rewarding. Throughout my caregiving and the book, I would reflect that it felt like I had been born for this role. One of my favorite films was the John Candy/Maureen O’Hara starrer Only the Lonely. That Columbus directed film looks at an Irish American family through the eyes of the youngest son. In traditional families like that one child was usually “given up to the church” and one was expected to forego their dreams and desires “to take care of the parents.” Unfortunately, for John Candy, his mother is blind to his sacrifice and overly demanding. My own parents, especially my mother, were extremely cognizant of all that I did for them. Still, I began my caregiving just as I was beginning my career in financial advising and failed because caregiving became such a primary focus.

The surprises I discovered mostly related to how easily I assumed the role and how shocking it was that others had such a hard time doing it. This was true when I would look at my siblings, especially the one who lived near to my mother during most of her illness. He was often unable to recognize that our father might be needing his assistance, he was completely hands off. When they came north at the start of the book one of my mom’s doctors informs me of how sick she is. I was taken aback. That day I asked my brother what he understood of her condition and he was totally in the dark, willing to let anyone else assume responsibility. I would see it in other families as well. Spouses, children, and caregivers not asking questions or demanding treatments or even simple comforts like changing a dirty diaper. The other eye-opener for me was how I might be being perceived by the families of my patients in the hospitals where I had worked. When I returned to Psychology after failing at financial advising, my work was impacted in numerous ways by the observations I made of how both patients and families are treated by doctors, nurses and other hospital staff. I think families need to understand that they are their loved one’s advocate, their voice at times. If they don’t know what to do, get help.

ALISHA: Hmm, soul-wrenching is an umbrella term that I found holds the vast array of feelings that went into caregiving for me. There are many layers of grief, and many layers of deep connection and memory making that exist within caregiving, and all of them impacted my soul tremendously. It was very difficult for me to watch my parents, those who were once invincible and unharmable pillars of stability, slowly mortalize and succumb to bodily decline. Not that I was naive to this process being a natural part of life, but I think what surprised me the most about caregiving was just how hard it would be to watch this decline from a front row seat. My mom was such a go-getter and an active participant in life who continued to learn and try new things in her retirement. To watch her strong-spirited self-walk into the hospital as she was having a heart attack without feeling much of anything was a game changer. For the first year of her illness, most of which was in a hospital setting, her ping-pong match with life and death surprised me so deeply, as this version of her was not at all who I knew my mom to be. As my relationship with caregiving grew, I began to understand also how deeply tiring it was. And how much I welcomed any help eventually. And that was just part-time for me. My dad was the full time caregiver, and I began to recognize how much he struggled to ask for help in his never ending role of meal prep, dishes, laundry, caring for Sniff (our family dog), transporting my mom to and from medical appointments and dialysis, cleaning the house, ordering medical supplies, coordinating insurance and medical bills, understanding insurance and medical bills…it was a maze of SO MUCH.

Without a break, it builds up and is utterly exhausting. Help is a requirement, and in my opinion, you have to learn how to ask for help in order to survive it. This really sunk in when my dad had his heart attack 6 months into my mom’s illness, and both of my parents were in the ICU as next door neighbors. It was wild to see both of them in their mortal frailty, and it was hard not to grapple with my own mortality. Some people can do this with ease, and those some people are not me. I was so surprised at how altering this was for my psyche to wrap my head around individuating from my parents while also seeing them connected to tubes and machines to keep them alive and wanting more time to figure all of that out. What I really don’t think is understood about the role of caregiving is the amount of intentional, non-negotiable self-care it takes in order to care give well. It can look as simple as finding time for a five-minute walk in the mornings, or picking a certain kind of creamer for your morning coffee that makes you happy, but you need something. Something that is just yours. And the ability to ask for help or the willingness to do the work it takes to become able to ask for help. Either way, it is a very difficult road to go alone, and if it’s not done, the old saying typically wins: “The caregiver usually dies first.”

ALISHA: The system is such a hard one to exist in, and I deeply resonate with Mike’s comment about needing to be their voice. I remember learning on several occasions just how loud that voice of advocacy needed to be as well. It made me empathize with those who were sick and didn’t have advocates working as their voices. It can be a really overwhelming and sad feeling. As my mom moved around between hospitals depending on her stage of recovery, my dad and I would find ourselves dreading the need to “start over” with a new group of medical professionals that didn’t know my mom, her history, or her roller coaster of healing. As family, we had learned many nuances in different stages of my mom’s care that were helpful nuggets to pass along about what worked or didn’t for her, but without rapport between us and the medical staff in new places, it was a crapshoot to know if it would be well-received or not. Rightly so, the new staff and place would want to do their own assessments and treatment plans. There is nothing wrong with that, but my dad and I were the constants in all of these places, not the medical professionals, and we learned that we needed to advocate for her care when she was unable to do so even more often in new places until we had established relationships with the care team. Luckily for us, we met so many absolutely amazing medical professionals who did such beautiful jobs of learning my mom’s complicated story and intervening in all of the ways needed.

I am forever grateful to the wonderful medical personnel who also took time to talk with us as family members, and also really listen. We were very grateful for the care she received, AND, had we not been advocates for her, it could have looked very differently. To your question, I think it was a combo of naming that systemic pattern of advocacy needed and exhaustion felt as well as giving myself consistent compassion about the roller coaster my emotions were on that helped me care for myself the most. Permission to just be a complete mess and totally honest about where I was at was one of the kindest and gentlest ways I could have cared for me. I also chose to remain in graduate school, which represented my pursuit of myself in addition to caregiving, and that turned out to be an invaluable gift to my future self as well. I also stopped caring about what people would think if they saw me ugly cry. That was a permissive relief as well. I was less good at the resting part. I kept busy for fear of what would happen if I stopped, and being busy also helped me get through it all. Writing about this in the book and again now is still bringing up the fire around advocacy, so I would say there is absolute solace there in knowing that that message is out in the world for others to hear should they ever find themselves in a similar situation.

MIKE: I’m going to take your last question, first, Ben. While many of my colleagues describe writing their memoir as “therapeutic” and “soul freeing”, I had a very different experience. When I was writing I was often reliving some of the most painful, difficult moments. The part, however, that was really gut-wrenching was trying to get it published. I spent about two years pursuing and attempting to secure representation. Every rejection felt to me like they were rejecting my parents, my loved ones. I haven’t really found closure. Watching it come to market I notice that I’m letting go more and more. As far as taking care of myself goes, there were and are many activities that I find rejuvenating: Sitting in a dark theater eating Milk Duds and watching movies; cooking and baking; enjoying a fine meal. You may notice a theme here, FOOD. Food has always been a comfort for me. As I say in the book after a tough day, “Carbs are way better than feelings.” My grieving for my mom was complicated. I had been scheduled for lap band surgery on what turned out to be 2 days after her death. I postponed the surgery by two weeks, so basically I sat shiva for 5 days, went back to work for a week and then was at home recuperating for 3 weeks. Well, those first few post-surgical weeks’ food choices are very limited. I cried that week for all the dead I ever knew.

NANCIE: I am not good at taking care of myself. I’ve never been good at it, but it’s worse now. Until recently, when people said, “Remember, take care of yourself, too,” I’d respond that I was, not to worry, things were fine…they have not been, and I’m just beginning to realize it. During the past year and a half, my routines vaporized. Dad lost his social outlets. He can no longer play golf. Now, except for breakfast with his friends on Tuesdays and Thursdays, I am his social outlet. I try to make sure he gets out at least three times a week, and because he’s around the house more, his to-do list gets longer and longer. It is like he wants everything done now and to experience everything he can because he feels he’s running out of time. In 2020 I had to cancel a trip to Sicily I had planned due to Covid-19. It was rescheduled for earlier this month, and I looked forward to the rest and alone time, but at the last minute, Hurricane Ida and the new COVID variants resulted in my having to cancel again. And I’d saved up all my self-care for 18 months! It’s taken me a week to sort all that out and start to get back into making sure I’m well so I will be well enough to care for Dad as his situation continues to change. How can I complain when my situation is nowhere as difficult as those Alisha and Michael experienced? After all, Dad has been pretty independent and relatively well, and it’s only recently that things began to get more serious, more demanding. Writing about moving in with Dad, my mother’s death, and the issues that needed to be resolved with my father and myself before truly taking care of and advocating for him was, at times, very painful. There were times I wept as I typed. It was cathartic on many levels, but it was not an easy book to write. Even now, as I reread the book or try to, I find myself in tears. This tells me that there is still more to resolve. There always will be.

ALISHA: You know, even though there are 43 million caregivers in the US, 10 million of them being in their 20s and 30s, I struggle to relate to a lot of folks my age around this particular situation. I felt very isolated as it was happening, as most, but definitely not all people my age, were not in a similar position. My day-to-day life looked so different than theirs did that sometimes it was hard to remember what life was like before it all happened. They were living life, getting married, having kids, and having fun, even. The gall, ha! I could barely remember what day it was, much less think of having fun. However, I had the most amazing support system of my grad school professors and cohort mates, friends that I had made in Pittsburgh, my family members, my parents’ neighbors, the medical staff that cared for my parents, my friends back in Colorado, and my parents’ friends, and I needed every bit of their support. That sounds greedy. It probably was. But I couldn’t have made it through that time without any one of them.

At around 2 years after my parents died, I went on a search for others who may find themselves in my age group that had also experienced a death of a loved one before others in their peer group had, and I found a wonderful group called ‘The Dinner Party” that was created for just that. I became a host of a group, and met some other 20-40 something year-olds who had lost siblings or parents long before their peers. This group has been such a gift, and it has become a place where I can exhale when I am honest about how I am doing without having to explain any of my grief process. I wish that our culture better understood what to do with hard things and difficult feelings. Explaining my grief response to people who may not understand it usually inhibits me from feeling it as deeply as I need to in order for it to fully process, so it is amazing to connect with others that have felt this strange pain in a similar way, though all of us wish we didn’t. I don’t have much of a writer’s network yet, but I am very much looking forward to its expansion! I connected with a couple of folks through When Words Count that I am still in touch with that are lovely and supportive, and I look forward to meeting more people, like Mike and Nancie, in my writing future.

I can say that when I posted my book release on Facebook, I was incredibly overwhelmed with the amount of support and encouragement I received. It included so many disparate people from all of the chapters of my life that seemed separate, and I look forward to connecting with others who may be in similar situations in the future should they reach out. I have found a lot of support and community in the organ donation community as well, and especially with those connected with the eye bank. I do feel a part of that community, and revere its sacredness tremendously. I also have a wonderfully loving partner that I couldn’t do any of this without either. I consider myself very lucky to feel so supported, and I am forever grateful to all those who gave their support to me. I want to pay it forward to anyone else who may need support amidst their caregiving roles, as it’s so important to not feel alone.

ALISHA: You know, even though there are 43 million caregivers in the US, 10 million of them being in their 20s and 30s, I struggle to relate to a lot of folks my age around this particular situation. I felt very isolated as it was happening, as most, but definitely not all people my age, were not in a similar position. My day-to-day life looked so different than theirs did that sometimes it was hard to remember what life was like before it all happened. They were living life, getting married, having kids, and having fun, even. The gall, ha! I could barely remember what day it was, much less think of having fun. However, I had the most amazing support system of my grad school professors and cohort mates, friends that I had made in Pittsburgh, my family members, my parents’ neighbors, the medical staff that cared for my parents, my friends back in Colorado, and my parents’ friends, and I needed every bit of their support. That sounds greedy. It probably was. But I couldn’t have made it through that time without any one of them.

At around 2 years after my parents died, I went on a search for others who may find themselves in my age group that had also experienced a death of a loved one before others in their peer group had, and I found a wonderful group called ‘The Dinner Party” that was created for just that. I became a host of a group, and met some other 20-40 something year-olds who had lost siblings or parents long before their peers. This group has been such a gift, and it has become a place where I can exhale when I am honest about how I am doing without having to explain any of my grief process. I wish that our culture better understood what to do with hard things and difficult feelings. Explaining my grief response to people who may not understand it usually inhibits me from feeling it as deeply as I need to in order for it to fully process, so it is amazing to connect with others that have felt this strange pain in a similar way, though all of us wish we didn’t. I don’t have much of a writer’s network yet, but I am very much looking forward to its expansion! I connected with a couple of folks through When Words Count that I am still in touch with that are lovely and supportive, and I look forward to meeting more people, like Mike and Nancie, in my writing future.

I can say that when I posted my book release on Facebook, I was incredibly overwhelmed with the amount of support and encouragement I received. It included so many disparate people from all of the chapters of my life that seemed separate, and I look forward to connecting with others who may be in similar situations in the future should they reach out. I have found a lot of support and community in the organ donation community as well, and especially with those connected with the eye bank. I do feel a part of that community, and revere its sacredness tremendously. I also have a wonderfully loving partner that I couldn’t do any of this without either. I consider myself very lucky to feel so supported, and I am forever grateful to all those who gave their support to me. I want to pay it forward to anyone else who may need support amidst their caregiving roles, as it’s so important to not feel alone.

NANCIE: My youngest daughter recently moved in with Dad and me to escape high rents in New York City because she can do her work from anywhere and she wanted to be here for Dad and me. She already has friends, runs her businesses online, and is my in-house source of information about this area I’ve lived in for thirteen years. That was a wake-up call. I need to get out more. Emotional support comes from friends (new and old) via e-mail, Facebook, Instagram, and Twitter. I have belonged to one online writers’ group since my middle child was three months old. As online communities do, though the topic was writing and we do discuss it, we’ve morphed into a group of old friends. We’ve lost friends, parents, and lately several are dealing with partners who have dementia. They were present for every moment during my mother’s death—one of them, a poet, helped me choose the poem I read at my mother’s service. They are like family to me. I think the biggest challenge for most caregivers is the lack of physical support they need. Someone to give them a break or a day off, or prep some meals. My daughter is here, my brothers will come up to stay with Dad. I am so fortunate.

MIKE: I can answer that with a resounding “YES” and “NO”. In general, I’ve gotten support wherever I’ve sought it. When I was caregiving my parents, I had great friends who were there for me, and of course my husband was a rock. On the other hand, I did let some friends go who couldn’t handle hearing about what I was going through. My younger friends, I think, couldn’t handle facing their own parents’ mortality. Many of my friends in the gay community expressed feelings that grew out of their coming out experiences in their family. Some who had not been able to make peace with their family’s response to their coming out expressed envy about my relationship, while others seemed to be thankful that they wouldn’t have to be so involved because of their estrangements. Of course, in the subsequent years I’ve seen many of the estranged folk struggle to make peace with their parents before they died.  I also feel quite blessed to have built a strong, caring support network among writers. It started when I first began to take memoir classes at Gotham Writers Workshop. After my Intro course about 8 of us formed a writer’s group and wrote together for several years. Many of those writers are still in my network today. One of them went on to get her MFA and has published two well received novels. Another has become a major influencer in the gay community. The rest continue to write, whether for eventual publication or for their own edification.  There were some from Gotham, however, who were less than supportive. I remember one woman who was in several of the memoir classes I took, who absolutely hated my writing.

My mom and I could be very crass with each other. We share a twisted sensibility. She would constantly criticize the way I wrote about my parents. She was appalled at my opening chapter when I talk about the day I saw my mom’s and my dad’s genitals. I dreaded every time she opened her mouth. Then there was my last teacher at Gotham. He was a great editor, and many of his suggestions shaped the final manuscript, but in reflecting on my story he said I “was a real asshole.” Well, the opinion of each other was mutual and reflected in my evaluation. The bulk of my current support network, however, has grown from my participation in the When Words Count Writer’s Retreat in Vermont. I have about 15 other writers who I met there with whom I share my work, and my life. They are spread out, mostly on the east coast, but I see them whenever I can. We’ve been known to rent an Air BNB for a few days and do our own writer’s retreats. I think of the place as “my community.”

NANCIE: That’s a great question. I have all sorts of plans, but I’m a bit behind. A month before Tea with Dad was released, Dad turned 91 and was admitted to the hospital shortly after. He did not bounce back as quickly as he has in the past it took us about two and a half months to arrive at our current new normal. This has required changes in schedule for both of us, more of my involvement with doctor appointments, household tasks, and advocacy for support. As I’ve mentioned before, I’m very fortunate to have my daughter here and supportive brothers who, though they live away, are very responsive. As all of us know here though the book is done, the business of getting it out into the world, making sure readers are aware of it, and now navigating the COVID-related issues hitting the publishing world is very time consuming. It takes a different part of my brain (and often one I’m more comfortable operating in) than my writing does. But I think we’re back on track. I’ve tabled the memoir about my mother because the book on Haiku and the characters in the novel I’ve been playing with for about 30 years seem to be in my mind all the time. For the first time I’m energized about writing. It could be that Fall is here, too, and for some reason starting projects then has always been easier.

ALISHA: Great question! I have been thinking about what is next for a while, though, the work of putting a book out into the world has been like an additional part-time job, so I think a bit of rest is my immediate plan! I wasn’t sure if Four Eyes was going to be my only book or not, but now that it is here, I’ve got a lot of ideas about various experiences I have had in my life both personally and professionally that I would love to continue to write about. I love writing non-fiction posits on life, our collective stories, faith, humanity, and what gets us all through. Especially in our polarized world right now, I would love to write about continuing to find kindness amongst difference and how kindness can be often mistaken for weakness. I have also worked in the mental health field of addiction and eating disorders for seven years, and I have learned so much from my clients that have taught me more about the depth of the human spirit that I would love to incorporate into my writing about what it’s like to be human in the world today. I would also love to write about the magic of equine therapy someday, and the relationship between humans, animals and healing. Near the top of my ‘what’s next’ list, however, is to write more about grief, as the aftermath of grief is just as hard as the caregiving, if not harder, and our society does not like that. I would love to write about normalizing what grief continues to feel like over time, and the particular challenge of identity development after losing both of your parents at a younger age. But first, a long nap.

MIKE: Every year I plan to write one of those newsy Christmas letters to include in my cards. So far, out of 59 holiday seasons, I’ve have actually done it only once. This year, I swear, will be different. This year I have the exciting news of the birth of my book baby to share. I’ve always seen “Four Funeral…” as the first book of a trilogy about coping with America’s failing healthcare delivery system. This book is dealing with the system through the eyes of a loving caregiver. My next book, whose first draft is about 30% done is about my bout of prostate cancer and looks at the health care delivery system through the eyes of a patient. It is tentatively titled “The Love Button”. The final book looks at the system through the eyes of a provider trying to function in the system. Of course, I will be squeezing all this in while hitting the road to sell the current volume.

In addition to the two additional memoirs, I have a few works of fiction that I have been playing at. One is a fictionalization of my work in a psych facility for sex offenders. I always felt that the staff held themselves very much above our residents and saw them as totally different, but as I got to know both my colleagues and my residents, I came to feel that there was little separating us. The book focuses on the lives of five of my colleagues and five of my residents as they face specific turning points in their lives that lead them to the facility. I envision the title to read thusly, “T*H*E*R*A*P*I*S*T*S”.

The other work I’ve been outlining looks at the day of in the life of a gay writer who is the single dad of a teenage son. When the boy’s school pops up on the news one day because of an active shooting emergency, the father finds himself believing his son may be the shooter. The novel follows the two throughout the day.

NANCIE: I can’t think of a thing. But, believe me, if something Alisha and Mike say prompts anything, you know you’ll hear it!

ALISHA: I echo Nancie here, and don’t think so! I just want anyone who finds themselves in a caregiving situation to know that they are not alone, that what you are going through is so valid and difficult, and that I would love to hear their story at my Gmail address callingallkindness@gmail.com if they want to reach out! Thanks for all of this, Ben! And I am with you, Nancie, reading yours and Mike’s books from here on.

MIKE: So true, my book baby is out in the world: no epidural, thankfully no episiotomy and no blood shed. There has been sweat and tears, but so many joyous moments along the way as I threw my ideas into the world and had them come back to me, as I got to know fellow writer, that includes Nancie and Alisha, of course. There are two lines of thought in the book that I like to bring out when I talk to others about it. One is what I see as a scathing look at health care delivery and how the profit driven model of medicine is curing illnesses but losing the patient. While choosing the parts of the story to include in the book it is apparent that the aggravating and dissatisfying moments stand out the most and tell the best story. It is those moments that highlight the ways in which hospitals are forced to do more and more with less and less. Imagine a hospital, if you will, where staffing patterns are based on census and patient needs rather than minimum guidelines set by bureaucrats.

The other discussion point that I believe the book can generate is in regard to having those “difficult discussions”, the ones where you tell your loved ones how you’d like your end of life to be, where you decide how much intervention is too much, where you tell them what to do with your remains. As a therapist I encourage others to have this discussion while you still can. When my father-in-law had the accident that led to his brain damage and eventual death, he had not had those discussions and there was little thought as to what he might want. “Just do what you need to do to save him” was the order of the day. Ultimately, because he was conscious, he was able to tell the doctor when he had had enough and refused dialysis when it was offered.

Ben, I’d really like to thank you for arranging this interview and introducing me to these wonderful women and fellow memoirist. It has been a great experience.