As many of us find ourselves in the unexpected role of caregiver, we turn to books to educate us, console us, and to remind us that we’re not on this journey alone. In no particular order, here are some staff picks that we’ve appreciated along the way.
Rachel Donnelly is the Founder & CEO of Black Dress Consultants, where she helps manage end-of-life affairs so that individuals and families can stop wondering what they should be doing and get back to the things that matter.
Who do you care for (now and/or in the past)? What is your role/relationship?
I have cared for many members of my family in the past, including my grandmothers, father, mother and uncle. These loved ones have all since passed away and now I care for my amazing husband, son and daughter.
When did you start to realize you were a caregiver/end-of-life decision maker?
As a small-town doctor’s daughter, it was normal to be around those who were sick, aging or dying. I spent many days in my father’s office and accompanying him when he made house calls or rounds at the hospital.
My caregiving journey officially began at age 13 when my father was diagnosed with cancer. Three years later, my mother, siblings and I had to make the difficult choice to discontinue life support and he passed away shortly after.
Unfortunately, years later, I had to make the same choice for my mother, which left my sister and me as the next-in-line caregiver for our uncle who was in the late stages of Parkinson’s Disease.
These circumstances forced me to grow up earlier than my peers and to make decisions around end-of-life that many have never considered so young.
What helps you when you’re feeling overwhelmed by your caregiving/death/after loss responsibilities? What advice would you give to family caregivers in this situation?
There were countless times when I agonized over whether I was making the best decision for my loved ones.
With each task and decision, I tried to remind myself that I was doing the best I could with the information and resources I had. Many times caregivers and family members are put in circumstances where they have to make decisions without knowing what their loved one would do or want. Sometimes, you just have to take a deep breath, follow your gut and do the best you can.
I would encourage family caregivers to ask for help and when possible, outsource tasks to friends, family and/or professionals. You don’t and shouldn’t have to do this alone.
What is the one thing you know now that you would tell new family caregivers?
Do as much estate and legacy planning as possible NOW. And I’m not just referring to wills, power of attorney and advance care directives. These documents are crucial, but I also encourage family caregivers to document and preserve stories, traditions, photos, digital assets and other end-of-life wishes.
How has caregiving/loss changed you?
While I jokingly refer to myself as a real-life Little Orphan Annie whose life should be subtitled “Death Becomes Her,” I realize now that my upbringing and experiences with caregiving, end-of-life and after loss led me to create something truly extraordinary, which is a business that I needed. Necessity is the mother of invention, right?
I founded Black Dress Consultants to help family members and individuals manage the unavoidable logistics and administrative tasks of end-of-life. Every day, I wake up with a goal to help families grieve better, whether that is by making sure they’re more prepared beforehand or by taking tasks off their plate after a loss.
Each phase of my life has been a learning experience, which I’ve tried to approach with laughter, knowing it truly is the best medicine.
In honor of National Family Caregivers Month, we spent time getting to know leaders who are making a difference in their community, and we want you to know them too. Roz Jones is a professional caregiver, coach, speaker and author based in Jacksonville, Florida. We highly recommend tuning in to her Clubhouse sessions or checking out her YouTube series!
1. Who do you care for (now and/or in the past)? What is your role/relationship?
Currently I am a CNA [certified nursing assistant] who owns a Non-Medical Home Healthcare business. I do what I do to help the caregiver on their journey to reduce the S.O.S. on their journey. The relationship I have to my clients is a supportive companion for sharing stories, interests, and activities.
2. When did you start to realize you were a caregiver?
I wasn’t even familiar with the term, to be honest. I didn’t understand the term until the nurse at the hospital told me I was giving great care to a patient who wasn’t related to me. The person I was advocating and caring for was a member of my church who asked me to go to the hospital with her while she was having surgery.
3. What helps you when you’re feeling overwhelmed by your caregiving responsibilities?
I learned to speak new languages (hahaha). I also take naps.
I not only teach, but practice meditation in my club on Clubhouse. The club was initially a hobby for friends, but turned into a safe place for caregivers to discuss their needs for caregiving. And also self-care needs for themselves.
4. What advice would you give to family caregivers in this situation?
Know and understand what you are saying YES to before you say YES. Be flexible and do your research on the diagnosis of the one you are taking care of to understand the accountability and responsibilities. Also, be honest when you are no longer able to provide care.
5. What is the one thing you know now that you would tell new family caregivers?
It’s ok to say NO. It’s also ok to ask for help. Incredible things happen when you ask for help.
6. How has caregiving changed you?
Having the spirit of service and nurturing.
Connect with Roz
Originally published on The Society for Participatory Medicine Blog
I received an uncharacteristically anxious text from my friend Aileen: “I am having an emergency with my Mom. Please call ASAP.” When I last talked to Aileen, her mother’s dementia had been worsening slowly. A little more confusion, a stovetop left burning after cooking a meal. But now, her mother was significantly more agitated and paranoid—pacing the halls, hearing music, convinced her family was plotting to kill her. She wasn’t sleeping, so Aileen and her father were on duty 24/7. It had become unsustainable.
Aileen didn’t know what to do. She wanted to protect her mother, and feared triggering her mother’s panic by entrusting her to unfamiliar medical staff. But I could see the writing on the wall—If they didn’t get professional help, they would fall apart. I finally convinced her to go to the ER, clarifying that asking for help wasn’t a sign of weakness but a sign of strength.
Like most physicians, I never learned about the issue of family caregiver burden in my medical training. I hadn’t noticed caregivers in the halls of the hospital because I was trained to focus on the patient. But if the support structure around the patient is crumbling, the patient will, too. I became aware of this issue only after making a film about a friend who went home on hospice to die. But during the film’s editing process, I realized that her husband’s story was more urgent. I had thought of him as a secondary character, someone to open the door for the hospice nurse. But his continued deterioration over the course of the film was impossible to ignore.
My friend Aileen is not unique. She is one of 53 million people caring for family members at home—that’s one in 5 Americans, and the number is rising fast. As families shrink and disperse, and rates of divorce and debt rates rise, we are entering the perfect storm. And the stress of the pandemic has punched an extra hole in our already leaky boat. Most caregivers like Aileen don’t have many other family members around to take shifts and help with the stress and work. So they become progressively exhausted, financially debilitated, isolated, and overwhelmed. Their own health suffers, too.
When Aileen checked her mother into the hospital, she got three days of rest and her first full night’s sleep in months. Her mother returned calmer, and was able to settle back home. But now they were anxious. It wasn’t a matter of if her mother would decompensate but when. The situation felt like a ticking time bomb.
So what can healthcare providers do to help caregivers like Aileen? Let’s start by identifying the caregivers associated with our patients. Caregivers are everywhere; it’s just a matter of looking for them. Many patients don’t realize that their wife or daughter is actually their caregiver, and many caregivers don’t realize that they are more than just a wife or daughter. Start by asking the patient: Who goes to the pharmacy for you? Who drove you to your appointment today? And remember that your patients might be caregivers too.
Once you’ve identified a caregiver, acknowledge their work—the love, sacrifice, and loyalty that it entails. Many caregivers have told me that simply having their physicians or nurses acknowledge these issues makes them feel empowered and less alone. Be sensitive to the fact that caregivers often experience guilt, shame, and feelings of inadequacy around their role. As such they are unlikely to ask for help. And even if they are open to getting help, they are also often too overwhelmed to utilize help. As healthcare providers, it’s our job to lean in and initiate support, not wait until caregivers are worn out and depleted.
Identification of a caregiver is also a good time to clarify the patient’s medical goals and encourage completion of a POLST form if appropriate. This will not only ensure goal-concordant care for the patient but will also help support the caregiver who will likely be the one tasked with making difficult decisions when the patient’s condition worsens. When I asked Aileen what treatments her mother would prefer in the event of major organ failure, she was adamant that her mother would not wish to be kept alive on machines and would prefer care focused on comfort. Not only did Aileen’s mother not have a POLST form, it had never been brought up by her physician.
Finally, after identifying caregivers and acknowledging their experience, we must connect them to helpful resources—professional and personal. Hospitals should be well-connected with the resources in their local community, and have personnel, often social workers, who can connect patients with resources like hospice, respite, support groups, educational programming, and other programs and benefits that can aid them in this journey.
Family caregiver burden is a rising public health crisis that will affect almost all of us eventually. As clinicians, we are in a prime position to offer help to this critical workforce. It’s time for us to acknowledge the invisible caregivers among us.
Jessica Zitter, MD, MPH, specializes in Critical Care and Palliative Care medicine, and practices at a public hospital in the San Francisco Bay Area. She is the author of Extreme Measures: Finding a Better Path to the End of Life, and director of Caregiver: A Love Story.
Republished with permission of the copyright.
As busy as we all are nowadays, we’ve become huge fans of podcasts as a way to get up to speed on all things caregiving. We listen to a lot of them, and so should you.
Whether it’s on your morning commute, at the gym or while you’re cooking dinner, listening to podcasts is just the thing to get the information you need and to remember you’re not on this journey alone. In no particular order, here are ten of our favorites of the moment – share with a friend or keep for yourself.
A weekly podcast that shares personal and practical insights on caring for a loved one with dementia, as well as tips to help caregivers prioritize their own emotional and mental well-being.
How We Got Here:
An interview-style podcast about what it means to give and receive care by talking to people about the circumstances that introduced them to caregiving and how these experiences changed them.
When I’m 64:
Personal stories, expert insights: How do we take care of each other during a pandemic? A health care crisis? When we’re 24 or 64? Our new podcast, When I’m 64, aims to shed light on these challenges by bringing together the real-life stories of caregivers and the insights of leading experts.
Happy Healthy Caregiver:
A show where real family caregivers share how to be happy and healthy while caring for others. Host and Certified Caregiving Consultant, Elizabeth Miller, shares her stories, tips, and speaks with others who are current or former family caregivers.
The Caregiver Coach Podcast:
Certified Dementia Coach & Practitioner, Benita Hampton, offers tools and tips to help you navigate the messy and the magical sides of caregiving. We discuss issues and topics that are relevant to caregivers and women just like you.
The podcast about our lives as caregivers. From autism to Alzheimer’s, we’ll look at being a caregiver both personally and professionally.
Daughterhood, The Podcast:
Hosted by Rosanne Corcoran, a primary, sandwich, in-home caregiver, this monthly podcast aims to provide insight into navigating the healthcare system, resources, support and community to those caring for their loved ones.
Experience the intense journey of caregiver and comedian J Smiles. Listen and laugh along as her use of levity reveals the stress and rewards of caregiving interwoven with her own personal journey.
On Good Grief we explore the losses that define our lives. Each week, host Cheryl Jones talks with people who have transformed themselves through the profound act of grieving. Why settle for surviving? Say yes to the many experiences that embody loss!
Alzheimer’s Speaks Radio:
Is about “Sound Information, Not Sound Bites.” We are true talk radio with a mission to raise all voices around the world – big and small. From a person diagnosed with a form of dementia or MCI, to family and friends, care partners, authors, researchers, support services, education, entertainment, advocacy work, to technology platforms, devices and support; all voices are welcome to have an interesting and respectful conversation with our host Lori La Bey.