A Staggering Fact

AN ESTIMATED FIFTY-THREE MILLION AMERICANS, one out of every four people over the age of eighteen, are now providing care or assistance to a friend or family member, the majority without pay.¹ In the coming years, as the wave of aging Baby Boomers crests, a Silver Tsunami will raise this astounding number even higher. Yet amidst the gathering storm there are shafts of light.

A Looming Public Health Crisis

As mentioned in my last Post, caregiving can be one of the most demanding activities of a lifetime. As our population ages and becomes more disabled, the physical and mental burden on caregivers continues to escalate. The personal and collective toll on our mental and emotional health, including sleep deprivation, loss of work, financial stress, etc., is significant.

Compounded by Covid-19, the Centers for Disease Control and Prevention are calling our national caregiving situation a “public health issue.” More alarmingly, others are describing it as a public health crisis! The situation will not ease up any time soon.

A Daunting Responsibility and a Compelling Opportunity

Here’s the key: a golden opportunity, hiding in plain sight. Through the close proximity caregiving demands, whether for years or a brief duration, we’re bound to learn more about what’s important to our loved ones regarding their values and preferences. This knowledge can be shared amoungst family and clinicians and be immediately useful.  Simultaneously, millions of caregivers are learning to better understand and navigate the healthcare and hospital systems.

Embedded in the caregiver’s journey, daunting as it may be, is a transformative opportunity to use this information to clarify what we would want and not want when it comes our turn. This clear-eyed awareness is the key to having our say at end of life.

A Simple Call to Action

By acting on what we learn as caregivers and talking with the people who matter to us, we can have a decisive say in our end-of-life care… Simply by having The Conversation… ‘No forms, or documentation are required… ‘Just a non-threatening, tentative plan, shared with the people who care about us, all subject to change as need be in real time… It’s a Conversation just waiting to be started.

Changing the Cultural Narrative

The simple act of talking about our care preferences, repeated in a few million households, will change how we do business at end of life.

Some years ago, the town of La Crosse, WI, (population fifty thousand) showed us how. Led by Gunderson Health System and their Respecting Choices program, clinicians, caregivers, and townspeople shifted the storyline from, “talking about end of life is too uncomfortable,” to, “talking about the care we’d prefer brings us closer and gives us peace of mind.”

Through word-of-mouth and pride of ownership, in restaurants, bowling alleys, living rooms and churches, people began to talk openly about dying, and to trust that something good would come of it. The outcome was that ninety-six percent of people who die in La Crosse have an agent for healthcare and an advance directive in place.² This led to a noticeable reduction of physical and emotional duress for both patients and loved ones at the end of life.

“Who’s your Person?”

This raises a key question. Who will speak up and advocate for you if you’re unable? Statistics have it that eight out of ten of us will need a spokesperson (our Healthcare Agent) at some point during our decline. As a caregiver, perhaps you’ve already been chosen to be that key person. Here again is a golden opportunity to use the hard-earned lessons of caregiving to motivate us to choose and begin to prepare “our person.”

Caregivers are Transforming Healthcare from the Ground Up

Family caregivers provide an invaluable service by generously giving their time and attention. In addition, by learning to ask important questions, and prompting discussion of our loved ones’ values, goals, and preferences, we provide an equally important service.

Unfortunately, most medical providers (outside the field of palliative care) admittedly lack the time and incentive to meet their patients’ need for education and planning. Instead, as concerned caregivers and advocates, we can initiate these conversations, to help our loved ones better understand their options, and make informed decisions.

The practice of discussing our care options, sooner than later, is the simplest approach to easing undue fear and anguish surrounding end of life.

All Caregivers Can Learn Basic Palliative Care Principles

The palliative care model is our healthcare system’s moral compass and North Star. ALL patients with chronic and advanced illness could benefit from a palliative care consult, and its holistic support. That said, there are barely enough trained palliative specialists to meet the current demand. While medical schools ramp up to meet the growing need, all caregivers are encouraged to learn and share these basic palliative care principles:

• Being present, and offering one’s full, undivided attention
• Being generous with one’s time
• Listening more than talking, with empathy and compassion
• Learning about the person and what matters to them
• How does your loved one define “quality of life?”
• Helping the person document their healthcare wishes, if they so choose, through an advance directive
• Asking if they’d like to talk with a palliative care specialist

Caregivers are the Medical Team’s Eyes and Ears

Remember the importance of simply keeping your loved one company. Your mere presence can be a true comfort. Be aware and on the lookout for notable changes. Sharing your observations and insights can be very helpful to the medical team.

Physically, is your loved one’s pain being well managed? Are they relatively comfortable? How’s their appetite? Are they safe? Mentally, is your family member still well oriented? Are they engaged? Bored? Or confused? Emotionally, is your loved one calm? Anxious? Bereft? Hopeful? Lonely? Afraid? Or angry? Spiritually, what seems to give their life meaning? Do they feel loved? Are they at Peace? Do they feel forsaken? Abandoned? Or grateful?

The Bottom Line: An Essential Need for Self-Care

Whether you’re a an informal, part time caregiver, or a full time, paid professional, this can be demanding work. The need for caregiver support and education is ongoing. Remember to include yourself in the circle of care. Ask yourself what’s required to make caregiving sustainable. Rest and recovery are essential. Also, talking with other caregivers is a helpful coping strategy.  Even when things go as well as possible, caregiving is still a demanding labor of love.

Next Week’s Post: A Generation Poised to Transform End of Life Care

 

A Medical Advice Disclaimer

The content of this blog is for informational and educational purposes only. No aspect of its contents is intended to substitute for professional medical advice, consultation, diagnosis, or treatment. The author is a spiritual care provider, not a doctor. Always seek the advice of your physician or other qualified health care provider with questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen. Never disregard professional medical advice or delay in seeking it based on something you have read here.

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Until next week, ‘Safe Journeys,

DSW

 

1. The Centers for Disease Control and Prevention (CDC), https://www.cdc.gov/aging/caregiving/index.htm

2.  Respecting Choices, https://respectingchoices.org