Caregiver Companion-A Guide for the Family Caregiver of Cancer Patients

Sorry for the  delay in getting this episode out to you all. It's been quite a summer!  My new wife and I spent the month of July on the other sode of the country, caring for my sister to recover from knee replacement surgery. Then it was my turn. I developed a large abscess, and with fever approaching 104, went to the ER at the local hospital. I spent 9 days in the hospital with a drain and IV antibiotics. We are now back home, but still working through whatever the medical conditions are. Needless to say, it was difficult getting our podcast out, and I am sorry. I know we have a devoted following of listeners, and Fran and I truly want to be a resource for you. So I am hopeful that I will be back to full strength and energy soon and can keep going. In the meantime, this episode is about you. We want to hear from you about what issues you want to learn more about, what are the things that you could use some advice or help with. So please reach out to us. We want to provide meaningful and relevant topics to bring you. Thank you for listening to our episodes, and please pass thi so to frirnds, family, even your health care providers.   John & Fran

When a serious illness affects a parent, oftentimes the young children are overlooked or excluded from the situation. Externally, they may seem fine, but internally they are observing, processing and trying to make sense of what is happening. In her insightful book, Dr Fran put us in the mind of young Stella, who witnesses the decline and ultimately, the death of her mother.  We see how each of the siblings responds to the family crisis, and where the youngest sibling is left. Written in the style of a memoir, written over time as Stella matures, it allows the reader to see into her thoughts and understanding of her reality. It is an insightful book, and a must read for anyone with young people in their lives.  

When a cancer diagnosis is given, it is given not only to the patient, but to every family member. Like a rock trown into a calm lake, those waves emanate out impacting family and friends surrounding the patient.  Over the course of our podcast, John and Fran have spoken to friends caring for a friend, spouses caring for a partner, a parent caring for their sick child. In today's episode, we examine and explore  dealing with a chroinic illness through the eyes of a young person experiencing the illness of a parent. Through her own personal experiences, and as an educator in the dramatic arts, our guest has been able to help her student confront the reality of life-threatening illness of a parent, and to express their emotions in a healthy way. "A Monster Calls" is a play about a teenager confronting the reality of a sick parent amid the turmoil of everday teenage life. It is a powerful story.

In this episode, John and Fran talk about the upcoming documentary "Caregiving" to be aired, Tuesday June 24 at 9PM on Public Broadcasting System (PBS) stations across the USA.  It will also be available to watch via streaming on  www.PBS.org. The documentary is produced by Wellbeings www.wellbeings.org , a family caregiver advocacy group , resource, and center for support. Produced by the actor Bradley Cooper (who cared for his Dad when he was diagnosed with cancer), and narrated by actress Uzo Aduba, Caregiving  tells the personal stories of family caregivers, their triumphs, their challenges, fears and emotions.  John learned about this project over a year ago, when Wellbeings was compiling stories for the documentary.  He wrote to them, describing his caregiving journey with Mary, as well as the work he has been doing since; developing a support group for family caregivers of cancer patients at a local hospital, his work with a patient support and advocacy group for for patients diagnosed with appendiceal cancer, and this very podcast. After Mary died, but before he started this advocacy work, John wrote an open letter to family caregivers. Providing advice and counsel from the point of view of one who has travelled the path, John set out to give some pointers and what, and what not, to do as family caregiver. Wellbeings graciously accepted John's story, and his open letter, to use as part of their media campaign in the days and weekds leading up to the broadcast. Both are available on www.wellbeings.org blog page, and on their instagram page.

It's been a while since we published a new episode. There has been a lot going on... with Fran's practice, with John's medical situatiuon, as well as personal things. We wanted to let you know what we have been up to, and also to let you know that we have not let you go! We have been talking, about next episode ideas, and plans for the balance of the year. As always, if there's a topic you want to hear about, let us know. We will do our best to research it and create an episode.   In the meantime, hang tight-we will be back with new topics and new guests. And remeber-you are not alone.

In this episode, John and Fran talk with an Oncology Pharmacist with a deep knowledge of the clinical trial world. We heard about the diferent phases of clinical trials, and what each means; when and where to look for clinical trials. We also heard about the rights and responsibilities of both the trial investigator as well as the patient.  If you are considering joining a clinical trial, there is a lot of information to process. Hopefully this discussion will give you enough background to be able to ask the right questions.  We have posted websites on our blog page that Dr Wong referenced during our conversation You can find them at www.caregivercompanion.libsyn.com

Caregiving is a marathon, not a sprint. The caregiving continuum takes a caregiver through all kind of responsibilties, tasks and pressures. In this episode, John and Fran talk about the pressure of caregiving at the end stages of treatment, whether that is remission and surveillance, or hospice and end of life decision making. As a caregiver, it is important to recognize, that even if your loved one is in remission, they are living in a body changed by the illness, and possibly the treatments. Alternatively, if you are facing end of treatment options, having those difficult conversations with your loved one is important for those left behind to understand their wishes.

There are many pressures people are dealing with in today's world. Watching the news, one sees wars, famines, natural disasters all around us. In our own personal world, prices, jobs, family, kids all contribute to a heightened anxiety. It seems a symptom of modern society. Add to this ambient stress levels, the added pressure of receiving a cancer diagnosis for a loved one, and the pressure is intensified. In this episode, John and Fran talk about the physiological and psychological responses to stressful situations, in particular the initial phases of caregiving. There are resources that can help the family caregiver.  Self care is an important element in dealing with stress as well. Small things can go a long way.

Winston Churchill, in describing the old Soviet Union, once said "it is a riddle wrapped in a mystery, inside an enigmna".  When a loved one is diagnosed with a rare cancer, it can certainly feel that way. With limited information, and uncertainty about where to turn, a caregiver can feel incredibly lost and overwhelmed.  Today John and Fran spoke with a woman, who cared for her husband Jeffrey, when he was diagnosed with rare appendiceal  cancer. She talked openly and candidly about her journey and what she learned along the way.   February is rare disease awareness month, in the United States, and we want to recognize those individuals battling rare diseases, and the people who love them and care for them.

When we become  caregiver, we take on many roles and wear many hats. Nurse, advocate, cheerleader, chief paperwork officer, to name a few. One of the most important roles we play is the handling and administration of medications for your loved one. With advances in pharmaceuticals, there are many anti-cancer drugs that can be taken orally as opposed to intravenously. That allows patients to avoid the infusion centers and risk of infection with an IV.  However, the benefits of oral meds means more diligence required by the caregiverr to help administer and handle meds in a safe manner.   Today John and Fran speak with a practicing hospital pharmacist and professor of pharmacology about the proper steps a caregiver should take to manage medications safely.

In this episode,  John and Fran talk with two friends, Laurie and Bonnie, who shared the common experience of breast cancer patients, support group members and advocates for other patients.  Their friendship took on a new dimension when Laurie was diagnosed with endometrial cancer, after 26 years remission of her breast cancer.   Laurie and Bonnie open up about that journey, and how Bonnie ,almost organically stepped into the role as caregiver to her friend.    Their's is a story of strength, courage and bonds of friendship that is both endearing and compelling.  

It's been a while, we know.  Holidays, moving, caregiving, and life in general kept us away from the podcast microphone. But we are back!  Fran and John share what the holidays were like for them, and discussideas for upcoming episodes. Season 2 should prove to be quite interesting and informative.  Above all, we want Caregiver Companion to be a place where you can come, at the end of long day, and listen to people who have been, or are still on your same journey.  Our message is 'you are not alone", and our mission is provide you, as a caregiver, a sense of community and fellowship, to be your companion on this journey. We wish you all the best for a year or growth, renewal, strength.    

This is our final episode for 2024. We will be back in 2025 with more topics and guests. It was a little over a year ago that the idea for this podcast was born. In 2019, I wanted to do something to help cancer patients and their familes, and by what I believe to be Divine Providence, I met my good friend Ray, who also lost his spouse to cancer. Ray introduced me to people at the local hospital where he volunteered, and we formed and developed a support group for family caregivers of cancer patients. There I met Dr Fran Baumgarten, and we all collaborated on the support group. That was  2019, and the support group has been running ever since. While the feedback has been  very positive, we are able to reach only those patients and their families at the cancer center. Last year I began thinking about how to reach more people, and make it easier to access, and the podcast idea was born. I spoke with Fran about possibly joining me as a guest from time to time. To my great joy, Fran was all in, and agreed to co-host with me.  So we were off and running. Of course neither of us knew anthing about podcasting. A crash course ensued. We recruited support, and thanks to my neice Toni-Anne, herself a podcaster, who gave us advice, introductions to tech people, and pointed us in the right direction. And a special thanks to my talented son Danny, who created our podcast cover art, as well as all the graphics and artwork used for the slides with our suport group. I know this means a great deal to him to lend his great talents to this cause, and I appreciate him so much. This podcast has exceeded our expectations beyond compare. After 17 episodes we have over 1,000 downloads, and are heard around the globe, including the US, Canada, Greece, Australia, Russia, France, Brazil, Romania, Argentina, Sweden and Bangladesh. We want to say a big THANK YOU to all our listeners. Your listenership tells us we are providing something helpful and of value to you. You encourage us to keep bringing interesting guests and meaningful topics to you. We are now planning next year's episodes, and if you have suggestions, comments, questions or ideas please reach out to us, through our website www.caregivercompanion.libsyn.com or through our email caregiver270@gmail.com   Also, if you need support or help from a therapist. Reach our to Fran's Place www.centerforcancercounseling.org There you can find help at little to no cost. We want to wish you peaceful, restful and joyful holiday season.  Take one step at a time, take care of yourselves, and continue on.   I want to leave you with the words of theoretical physicist Wald Wasserman.... "Life's purpose is companionship, friendship, love... and none of that could be experienced without you, so thank you, thank you, thank you"      

The holiday season can be difficult to navigate under the best of circumstances. But trying to manage through the holidays while caring for a loved one is particularly difficult. The added stresses of shopping, cooking, baking, holiday meals, parties, all build on top of an already anxiety ridden situation. But there are ways to manage the holidays. Today we talk with a licensed family therapist who gives us some ideas on how best to juggle the high expectations of the holidays while caregiving.

We have covered many different topics in family caregiving over the course of our episodes. These issues are universal to all caregivers across age, gender, and cultures. But within each of the topics discussed, there can be cultural nuances that create a particular perspective that impacts the caregiver. And, there may be cultural factors that create unique and particular nuances in caregiving.  Today, we  speak with an experienced nurse navigator whose patient cohort are from the hispanic community.  Angela talks about the similarities in caregiving issues, and also the unique barriers that different cultural groups face in caregiving.

Palliative care is a compassionate approach to healthcare that focuses on enhancing the quality of life for patients facing serious illness, at any stage of treatment. It aims to provide relief from symptoms, pain, and stress, while adressing the emotional, social and spiritual needs of both patients and their caregivers. Unlike curative treatments, which seek to eliminate disease, palliative care prioritizes comfort and support, by helping individuals navigate complex medical decisions and maintain their dignity. By integrating a holistic perspective into care, palliative services strive to improve overall well-being and ensure that patients can live as fully and comfortably as possible. 

It is often said we cannot control the twists and turns life brings us, but we can control how we react to them. Today, John and Fran speak with someone who has experienced cancer, both as a patient and as a caregiver. Michael had been caring for his wife with chronic illness for years when he received his own cancer diagnosis.  Today, thankfully, Michael is in remission and serves as a mentor to other patients traveling the same path he did. He also is an an active supporter and leader of a support group for family caregivers.  There is a path forward for all caregivers, and utilizing your lived experience can be a valuable gift to others going through it.

All relationships will face challenges over the course of time. Whether its money, jobs, kids, in-laws, couples will face diffuculties. Learning how to navigate through those difficulies is the key to success. Now layer upon that the uncertainty and challenges when one of the partners is faced with a cancer diagnosis. That can be like a magnifier upon the "normal" issues all couples deal with.  Today Fran and John speak with a yuoung couple who, after learning of a cancer diagnosis, decidednto ove forward with their lives. Dealing with the cancer, but also making a life for themselves at the same time. Listen to a poignant story of compassion, courage and committment.

As a parent, we are instinctively in the role of caregiver for our children. When our child is faced with a life threatening illness, our caregiving goes into hyperdrive. In this episode, John and Fran talk with Kristen Escalante, whose 12 year old was diagnosed with an rare form of cancer. Kristen shared with us how she used social media and her network of friends and colleagues to help navigate through this journey. Kristen talked about the search for the right doctor, moving across the country to get treatments, and facing the emotional and psychological strains that are associated with it. How she and her husband balanced caring for their daughter and trying to keep the house going, life moving and self care. There are so many facets to the life of a caregiver, and these can be multiplied when the one you are caring for is your child.

In this episode, John and Fran start the conversation discussing the news  that the Princess of Wales announced she is being treated for cancer. In announcing this news, she explained that the 'silence'  following her hospitalization was necessary so she and her husband could figure out how to explain this to their young children. That thoughtful consideration is necessary, when we talk about the various ways and directions  communication can take place within the circle of family and friends. Each communication contact point could have, and very likely does have, it own nuances and forms. It takes thoughful consideration to formulate what you want to say, and how you're going to say it. Each "audience" may have different needs and levels of understanding,. This is especially true when the audience is children. Take your time, discuss with your loved one how much to share, to whom you want to share, and in what form to share.