AARP Care-FULL Conversations

In a previous episode, we explored the impact of a serious diagnosis on an individual and the family. Today, let’s chat about the challenge of recurrence…the recurrence of a disease process or perhaps a physical limitation. Although the initial diagnosis is devastating, a recurrence of a disease after a period of remission is considered by many to be even harder.

Growing up, I learned that there is a difference between being alone and being lonely. My parents both savored their “alone time” every day. Time to read, to write, and to listen to the world around them. Being lonely, however, is a subjective experience…..how we FEEL when we are alone. To feel lonely is to feel isolated, disconnected, unseen, and unheard.

Today I want to chat about how we are transformed by our LIFE experiences. Within the context of our conversations—caregiving—I’ll be chatting specifically about how our experiences as caregivers and care receivers change us. So grab a cup of coffee or hot tea. It’s time to chat.

I have yet to meet a caregiver or care receiver who is CERTAIN as to how their respective journey will unfold. There are just too many variables related to the disease process or disability….as well as the inherent uncertainties of life in general. Hence, when in the trenches of caregiving, uncertainty is part of the lived experience…a challenging aspect to say the very least.

Once again it is time to chat! Grab a drink. Find a chair. And take a deep breath. I have a question for you today. Have you ever wondered how your story will end? I know….a rather disconcerting question. But one certainly worthy of our time and attention!

Today, let’s discuss how caregivers can leverage the available technology to their advantage. It is amazing what is out there…..seems like new innovations are revealed on a daily basis. Let’s see what might be beneficial to you and yours.

Serving as a family caregiver requires our physical, emotional, spiritual, and financial investment. On average, family caregivers provide 24 hours of care/week. The average duration of care is over 4 years. Additionally, 60% of family caregivers are employed outside the house. No wonder family caregivers are stressed! Working and caring simultaneously takes a toll on family caregivers—physically, emotionally, psychosocially, spiritually, and financially.

Over the past few months, we’ve been chatting about the challenges as well as the possibilities to be embraced during this incredibly chaotic moment in time. COVID-19 has and continues to push individuals, communities, systems, services, and governments to the breaking point. Thankfully, we’re proving to be amazingly resilient - a worthy foe. As such, we can learn from our collective experience of COVID. What have we learned over the past 7 months that will serve us well in the days and years to come?

Over the past two decades, I presented thousands of programs on various aspects of caregiving. However, I’ve never addressed the fundamental question of WHY we care for each other. What is the essence of care? Why are we seemingly compelled to care despite the challenges, the complexities, and the concerns associated with caring? Perhaps by exploring the heart and soul of care, we’ll gain a greater appreciation and reverence for the care we receive as well as the care we offer.

Technology will never replace the human touch. But it's an available tool to be leveraged for the benefit of caregivers and care receivers. Tech fills in the gaps of care. What gaps? Lack of family and friends needed to provide care. This is often due to smaller families. Geographically dispersed families. Combine those situations with the fact that most people cannot afford the expense of long term professional care - there are some significant gaps in care. These are just a few of the reasons that technology is becoming a vital part of every day life for many people. Technology has truly come of age!

The COVID crisis serves to highlight the importance of planning ahead - preparing to care. Constructing the basic outline regarding how we will care for ourselves or our loved ones WHEN there is a medical concern or disability is wise indeed. If we wait for an emergency, we’ll be caught off guard. Consequently, we’ll be in a reactionary mode instead of responding from a position of considered understanding. So, let's chat about ways we can plan ahead!

Over the past 7 months since COVID changed Life forever, I have a renewed appreciation of ritual - all kinds of ritual. During times when Life is chaotic, frightening, and uncertain, ritual serves to provide balance and stability. Interestingly, an incredibly important type of ritual has been difficult to conduct during the global pandemic...end-of-life rituals such as funerals and memorial services. Today, let's chat about the importance and the potential blessings of creating and conducting these rituals.

Today, I am going to be a bit counter cultural. I am going to speak of grief - the grief we’re all feeling due to the losses caused by the global pandemic. The coronavirus is not only causing a viral pandemic, but it’s giving rise to a pandemic of grief as well. Although grief is a difficult subject, I hope you’ll stay tuned!

In previous years, I’ve addressed the issue of Compassion Fatigue - a type of stress often experienced when we witness the suffering of others. Due to the COVID situation, I believe it’s worth our time and attention to revisit the topic. Each and every one of us has been through so much over the past 7 months. Additionally, we’ve witnessed our family, friends, colleagues and neighbors struggling with daily challenges. Being witness to the suffering of others ultimately takes a toll. So let's chat about how we can recognize the signs of Compassion Fatigue and then ways to address this stress.

Today, let’s address the life transition that all caregivers experience when the journey of caregiving ends. The ending may be caused by the recovery or by the death of the care receiver. Either way, who are we and what are we called to do when care is no longer needed? How do we feel? And what’s next for us? Important questions worthy of our serious consideration.

We are now 6 months into the COVID-19 pandemic. Hard to believe right? Looking back, I’m amazed by what I’ve seen and heard. Despite the daily - if not hourly - challenges posed by Life, I’ve witnessed the awesome resilience of people. So, let’s chat about what it takes to bounce back from this unexpected crisis.

Today, let’s chat about the COVID crisis from the emotional perspective. With the highs and lows presented by this challenge, we have been put through the emotional wringer! And when feeling wrung out by life, it’s difficult to meet the day to day challenges of family, work, and life! If serving as a caregiver these days, the emotional angst experienced during the COVID adventure is just another drain on your limited reservoir of energy. So, how can we effectively deal with all the emotions that bubble up?

Change has always been part of the lived experience. However, as a result of the COVID-19 crisis, we are experiencing change fatigue - one change after another. The proverbial domino effect. Nothing seems normal! Change disrupts our daily routines, life expectations, and our sense of certainty. Change reminds us that we are not in control! Challenging to say the very least, but this is the current reality. So instead of resisting change, how can we engage it?

Over the past 5 months, I have remarked to my housemate numerous times that I’m so thankful that WE are sharing the COVID experience. I’ve tried to imagine what it’s like for those living alone…day in and day out. The challenges of aging alone have been well-documented over the past few years - loneliness, reduced quality and quantity of life, and caregiving complications. The current pandemic is proving to make the journey even harder for those isolated and alone. Today, let's chat about innovative approaches to meet the challenges of aging alone.

Today, I want to chat about the challenges of caring for someone during a pandemic. As we all know, caregiving is one of the hardest - and most sacred - things we’ll ever do. Over the past 5 months, we’ve learned in real time that a viral pandemic makes the journey exponentially more difficult and complex. So, let’s take a few minutes to consider the complications and then identify possible ways to meet the challenge.

Today in the midst of a global pandemic, the almost universal experience of “being alone” resulting from self-imposed or mandated physical isolation once again highlights the issue of loneliness. Granted, COVID-19 presents a myriad of challenges. But physical isolation and potential loneliness are proving to be problematic for many people - particularly family caregivers. So, let's explore how we can support each other through this challenging time and mitigate our sense of loneliness. We ARE better together!

Due to the COVID-19 pandemic, we believe it’s important and potentially beneficial to chat about the impact of the pandemic on caregivers and care receivers. Today, I want to lay the foundation for a series of discussions about COVID and Caregiving. And I think the best way to do that is by considering the question - What Just Happened?

Based upon recent reporting, it’s obvious that the care offered by family and friends is essential - in fact, it’s invaluable! Family caregivers are the indispensable backbone of the health care system today. Consequently, family caregivers—instead of flying under the radar—should take center stage. It’s time to see and to hear family caregivers. It’s time to support family caregivers in meaningful and beneficial ways. It’s time—because family caregivers are essential to the overall health and well-being of our society.

Shared Decision Making is an approach to medical care that can make ALL the difference to you and your family - Person or Patient Centered Care. I was introduced to this concept many years ago when I started working as a hospice chaplain. Today, thankfully, this collaborative approach to health care is being recognized and taught in many medical schools throughout the country.

Whether you are currently a caregiver or care receiver, you’ve probably experienced a sleepless night or two during which you wondered and worried about what the future holds for you and your loved ones. Maybe you’re concerned about how you will care for your aging parents or for your spouse or partner? If living alone and have no children, who will care for you when a medical issues arise? Obviously, there are numerous issues that could cause you to toss and turn endlessly during the wee hours of the morning.

Over the past few months, I have presented many programs related to medical options of care. Part of the discussion focused on the distinction between pain and suffering—An important distinction to recognize as caregivers and care receivers.

I don’t know about you, but I have experienced my fair share of frustration with “the system.” And I hear countless stories every week from caregivers and care receivers dismayed by the medical maze in which they are lost. So, what’s to be done?

In a previous podcast, we discussed the impact that attitude has on the journey after a serious diagnosis. Today, I want to offer a different way of thinking about “the disease” or disability that has changed your life—an approach that I hope is beneficial for you and your family.

Today I want to chat about a moment in life that transforms our view of life forever—the moment in which a serious diagnosis crosses the threshold of our home and lands squarely in the middle of the den. Whether we are the patient or a concerned family member—after the diagnosis, life will never be the same.

Today, let’s explore what for many is a tough topic. I want to explore how we can be proactive about our wishes for end-of-life care. WAIT! Don’t delete this podcast!! Give me just a few moments to explain why this discussion is SO important….for you AND YOUR FAMILY!

In the years to come, have you ever wondered who will require care from you? And, who will care for you? Well, if you are like most people, you may have given these questions cursory consideration. And then, you went back to your daily routine. I am Not judging. Merely highlighting the fact that most of us don’t want to contemplate the eventually that we’ll be called to care and that we will need care at some point in time.

The real estate mantra of “Location, Location, Location” is certainly apropos for our discussion of where we choose to age. The environment in which we live has a direct bearing on how well we age. Everything from the climate to available services impacts the quality of life. The environment we enjoyed in our youth may prove problematic or undesirable as we age. Better to realize this sooner rather than later…and thus make the needed decisions to end up in a location that serves us well.

Today, we’ll highlight the importance of housing as we age. What worked well when we were in our 20’s may not serve us well later in life. You may be at a point in your life that you are DONE with home maintenance. Or, depending on your situation, you may NEED or WANT to explore housing alternatives.

Let’s consider how we can be proactive about our physical and cognitive health. As I’ll highlight shortly, the longer we can keep disease or injury at bay, the longer we’ll experience a high quality of life. A good thing indeed!

What if you or a loved one is diagnosed with a serious illness or compromised by an accident. WHEN, not IF, this happens…are you prepared to confront the challenge? Are you prepared to care? Have you reflected on your preferences for medical care? Do you know what your family and friends would want WHEN something happens?

Today, I want to chat about the risks of resistance. Resistance to asking for and receiving help. Whether a caregiver or care receiver, resistance to assistance is alive and well. However, this common reaction typically does not serve us well.

Today, I want to chat about how we understand the journey of caregiving - the meaning of illness and aging. As caregivers and care receivers, it’s important to recognize the meaning we attribute to illness and aging and how meaning informs and influences the decisions we make about options of care.

Today, let’s chat about our willingness or unwillingness to be vulnerable with family, friends, colleagues, and/or strangers. When we allow others to see us and to hear us, amazing things happen. Community is created. Support is offered. Connections are made and reinforced. And we are freed to live with our hearts, minds, and arms wide open.....vulnerable and alive!

Having recently attended the AARP Family Caregiving Executive Summit in Washington, DC, I am excited to share some of the new ideas being developed to enhance our lived experience - ideas that will become reality in the very near future if not already available. I certainly can't cover all of the innovative approaches to aging...but I hope to spark your curiosity about the creative aging resources on the horizon.

Today, I want to chat about the pros and cons of aging - the pluses and minuses about getting older. I know - most people don’t relish the idea of aging. But if we can be realistically optimistic about the journey, perhaps we’ll engage the journey in a more life-giving way. It’s certainly worth a try!

When knee-deep in the midst of caring for a family member or friend, have you ever looked in the mirror and wondered, “Who am I?” Have you ever felt as if you lost yourself somewhere along the way? If so, you are not alone. Today, I want to explore the implications of our personal roles playing second fiddle to that of caregiver.

Today, I want to talk about the experience of Being Left Behind. Often referred to as “the bereaved” - people who suffer the death of a family member or friend. In obituaries, we read that the decease is “survived by”…..Regardless of the terminology used, I want to focus on the experience of Being Left Behind. What does it feel like? How do we deal with Being Left Behind?

Today, I want to share a story that serves to highlight just how difficult it is for most of us to receive help from other people. More importantly, I want to reiterate that an essential aspect of becoming fully human is learning how to graciously offer and receive help.

Today, I want to chat about the difficulty of knowing when it’s time—when it’s time to change goals of care when companioning our beloved pets. When is it time to shift from a curative approach to a palliative (comfort) approach to care?

Today, let’s consider what it means to be called to witness the journey of a family member or friend. In a previous podcasts I spoke about the power of presence and the gift of listening—the importance of being with people through the trials of life. There are times when we can’t do anything to change the reality of a situation, but we can be present to the moment. What is required of us when called to witness?

Today, I want to reflect on the power of presence and our ability (or perhaps our willingness) to listen well—skills too often discounted or dismissed when there is so much to do! Granted, caregiving entails a myriad of tasks. There is so much to do. However, remembering the power of presence and the gift of listening is important for caregivers and care receivers. So, listen well.

If you are feeling a wee bit stressed or overwhelmed, you’ve come to the right place. Today, it’s time to remember that even during the toughest times, ya gotta laugh. No joke! Humor is no laughing matter. It has been scientifically proven that humor is an effective method of coping. So, humor me. Let’s chat about the benefits of a good belly laugh from time to time.

Care to chat about the journey of aging? Yep, I want to talk about getting older. I know, another socially taboo subject, right? Well, getting older may not be your favorite subject, but in order to age well, we need to meet this challenge head on and thereby recognize some of the opportunities afforded by aging as well. And over the course of our discussion, we’ll highlight the fact that the journey of aging is not a solo flight. We share our journey of aging with others—and that is a very good thing indeed!

It’s time to TAKE 5! Today, I want to chat about an essential aspect of life for caregivers—self care. And please note, self care by definition includes respite care - taking a break from time to time.

Over the course of my 60+ years on this earth, I have been blessed to know and to love some amazing elders—individuals who are a bit older and certainly much wiser than I. Today, let’s discuss how our lives can be enriched if we choose to listen and learn from the elders in our world.

Last year I was reminded once again of the importance of being known in this world. My brother died. Upon his death, I became the last one standing of my biological family. My brother was the last person who had known me my entire life. We had a common origin. We shared a common history. We knew each other from the inside out. Today, I miss “remembering when” with my brother! I long for him to fill in the blanks when I fail to remember a name or an event in our family. More than anything, I long to be known—a predominant desire for human beings that is seemingly magnified as we age.