Creating Reality (for Family and Friends)

One of the most important but under-appreciated duties of caregiving is communicating with family, friends, and co-workers.  Without you, what happens to, and with, your loved one is beyond comprehension and notice.

Simply put, caregivers are reality creators whom serve as the ultimate gatekeepers of understanding.

Unfortunately, this communicative responsibility is rarely appreciated because “it’s just talk.”  Yet, the communicative burden and opportunity of caregiving is immense and ongoing.  Communicating your care experiences is so challenging because what you are trying to help others understand is so different from what they are used to hearing. You are attempting to . . .

Break news—constantly.  Yes, doctors and providers break bad news all the time. They share diagnoses and reveal results from tests.  Doctors and providers can show the latest results from a CAT scan or a blood test. These are believed to be measurable and objective results that require little translation as they are reducible to “good,” “bad,” “improving,” or “deteriorating.”  From a provider’s perspective, there are some excellent strategies for effectively communicating bad news.

These are vital acts of communication, but they are different from what you have to do. The news you attempt to share is so much more challenging to explain because your news may not be “new” but it is still important.  Sharing your care experiences is an ongoing difficulty because the news you want and need to express doesn’t fit with others’ appetites for updates about a visit to a hospital, an upcoming surgery, or a recovery.

Your “news” exists before and after headlines, when living unfolds but doesn’t call out to be noticed. This is the news that matters most but is almost always under-appreciated.  The news caregivers must attempt to “break” is rarely accounted for because it may not conform to others’ expectations of prominence, relevance, or impact, even though for you and your loved one, it is all of these things, all the time.

Highlight not just what someone “has”, but what their illness or condition means for them (and you) now.  Most people believe explaining the care situation begins and ends with a medical diagnosis, or something that can be looked up on Google.

Yet, caregivers must constantly translate what they see, hear, and notice in ways that are meaningful beyond medical diagnoses. They may begin with a medical diagnosis but they are also always about how your loved one (and you) are making sense of experiences now.  Caregiver realities must account for today. This hour.  And they must include the very experiences, thoughts, reactions, and feelings that exist without clear answers or resolution.

This is exactly the moment when communication may be the most difficult, but also the most important. Well-intentioned friends and family may feel they already know what is happening—“Dad has Alzheimer’s.” “Mom has cancer.” “His son has special needs.”  Others too often mistake a diagnosis or condition with understanding. But you are close(r) to your loved one than perhaps anyone else and still close enough to family, friends, and work colleagues to know that what others think about your care experiences may be vastly different from your everyday reality.

In this divide, you live and care, everyday.  Even thinking about overcoming this schism in understanding can become exhausting, especially when you desperately long for others to know what you know and see what you see.

 Communicate to audiences who may not want to hear what you need to share.  Caregivers must always communicate within a context that seemingly defies others’ everyday understandings.  Because caregivers can’t rely on the desired benchmarks others expect when in conversation—progress, recovery, “good” news, the promise of the future—they must constantly fill in the gaps.  You must constantly tell and explain, and then explain again, and then explain away what others mistakenly might believe.

And caregivers must communicate truths that are contrary to what others want to believe. Or what others need to believe. Or what others desire to believe.

You, and you alone, must create space for realities to be shared that aren’t about recovery. Truths that don’t conform to what people want to hear or feel they can hear. Realities that may not have clean answers. Or that may have no good options or alternatives. Or may make people uncomfortable. Or may even contradict what others—from afar—think is good or even right.

Others may want sanitized responses from you reminding them that everything is fine or everything is going to be all right. Other people’s needs and desires can push back, subtly, and not so subtly against what you believe they most need to know if they were to authentically understand what is happening.

In the ongoing process of attempting to communicate accurately and authentically to others, your reality is vulnerable to becoming overlooked, under-appreciated, and ignored.  Over time, other people’s responses and misunderstandings—camouflaged in sincerity—can become ongoing communication challenges.  When you know the people you are sharing with only want to hear (or don’t hear) certain things, you can’t help but change what you say. And when you begin to revise what you (don’t) say, you become changed in ways that may make you doubt the legitimacy of your unique vantage point and value as a caregiver.

Zachary White, Ph.D. is the co-author (with Donna Thomson) of the book,“The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver.”