Michael Attas: Caregivers need to remember illness changes everyone

MICHAEL ATTAS Guest columnist

Tuesday August 3, 2010
 
 

Patients’ families often ask physicians “What has happened to my spouse or parent — they aren’t the person I’ve known and loved for 40 years.”

These are heartbreaking comments and they get at the fundamental problem of what our humanity means and how our identities respond to illness.

While all of us recognize that Alzheimer’s disease can alter a patient’s personality, in my experience any profound illness can result in similar changes.

When we are moved against our will to the “kingdom of disease” after becoming so used to living in what has been called the “kingdom of health,” we literally are transformed into a new person. Change is painful and the changes that come from illness often make the patient seem like a stranger to those who know them well.

At times it can bring out the best in a human. Patients can become more tolerant of themselves and others.

Rigidity can be replaced with flexibility and sternness with a wry sense of humor. Yet illness can often take us to our shadow side and the results often leaves family members confused about the “new” person in their midst.

Kindness can be replaced with rage, compassion and tolerance with a short fuse and wisdom with adolescent concrete thinking.

Merton’s message

Thomas Merton, the Trappist monk and author, wrote that we all have a true self and a false self.

The true self is the one created by God and lies at the core of our very existence. It is accessible mostly to God; with hard work it is sometimes understood by our conscious self as well.

But for various reasons, we surround our true selves with layers of other issues and realities. As a result, our truest and best inner being is often lost.

Disease often adds one more very deep, almost impenetrable layer that surrounds our truest and best self.

The health care system is ill-equipped to help people understand how difficult it can be on patients and families to find a total stranger in their midst.

Families are usually more aware of this than patients are themselves. Moving from the kingdom of disease back to the kingdom of health is often a journey of restoration. We long to be made whole again, to live the “way it was before.”

And sometimes this is indeed possible. Sometimes diseases can be conquered and the journey from brokenness back to wholeness becomes a path of self-discovery.

Yet reality is a cruel mistress and illness may rob us of everything that we hold to be true.

When that happens our emotional, spiritual, and often practical resources are strained to the breaking point. We find that we are human after all and we struggle with great issues that can overwhelm the strongest and most dedicated among us.

Ways to adapt

So how do families adapt to a radically changed person in their lives?

The first step is to recognize the process and toll that the disease is taking and to acknowledge that one more layer is being placed on their loved one’s true self.

It is something external to an inner reality. But they often need reassurance that their loved one’s truest self that God created is still very deep inside.

It has not been destroyed, but is being masked by the painful realities of disease and illness. The goodness is still there and may occasionally peek through in the simplest of ways.

Disease is best seen as a temporary interruption in our journey to wholeness and restoration.

And, secondly, caregivers need to seek out others who have traveled the same road. They need to find support groups and seek wise counsel.

Physicians need to be conversant in the demands that illness can impose on patients and families, and at the barest minimum help patients and their families seek out appropriate resources.

Finally, caregivers need time to restore themselves — to engage in solitude that renews, community that heals and relationships grounded in love that can become a lifeline for a journey that we all must travel.

Michael Attas is a local doctor, a medical humanities professor and an Episcopal priest. Contact him at Michael_Attas@baylor.edu.

 

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