Family Caregiving as a Hero's Journey
by Sheryl Karas M.A.
A unique perspective many caregivers have never explored is how the impact of being thrust into the role of caregiver for a loved one with Alzheimer's Disease, a head injury, or some other traumatic brain injury has affected them spiritually. I recently attended a workshop on the "Spiritual Impact of Trauma" led by Robert Grant Ph.D., the author of The Way of the Wound (currently out of print). Richard Grant works exclusively with trauma victims—war refugees, earthquake survivors, holocaust survivors, victims of violent crime. All of the people he meets are thrown against their will into situations beyond their capacity to cope for a limited period of time. Many of them do not survive intact and a large number go on to drown in a sea of addiction and self-destruction. But those who do recover often appear to undergo a spiritual transformation not dissimilar to the hero's journey that Joseph Campbell wrote about in The Hero with a Thousand Faces.
I was struck by how many aspects of that mythological journey were similar to what caregivers (and some patients) report to me about their lives. I understand that many of you reading this will not relate to or find comforting what I have to say in this article. I want to acknowledge that for many caregivers this life experience is grueling, depressing and debilitating. It wears you down and tries your patience, and is not spiritually meaningful in any way. However, for those of you who yearn to put your lives into a larger perspective, what I have to relate could provide a useful framework.
The Way of the Hero
In the mythological journey, the hero is cast into exile where he undergoes a series of harrowing adventures, which appear to result in his death in either a symbolic or figurative sense. However, death is not the end of the journey. The hero rises from the dead, rejoins the land of the living, goes back to his community and leads them into a new and glorious way of life. The gifts he receives in the underworld and the strength of spirit developed to survive the journey enable him to raise his people up to heights they could never attain without him. Nelson Mandela comes to mind. People report that physically he is a broken man but the strength of his spirit - his compassionate powerful presence - lights up a room and inspires his entire nation. Not all recovered trauma victims go on to be famous leaders, of course; however, according to Richard Grant, people who survive the transformations necessary to come back to a full and fruitful life after extreme trauma often exhibit a kind of inner strength and compassion most people fail to recognize as part of who we all naturally are. Let's examine the parts of this transformational journey in more detail.
Phase I - Shock and Trauma
Richard Grant refers to Phase I as "The Shock" or "Call to Awaken." This is when a traumatic event or series of life experiences disrupts the organization of a person's life, throwing them into a period of chaos, terror and overwhelm. For head injury patients and their families the event is the head injury itself. For dementia caregivers the shock could be the diagnosis but it usually has earlier roots in the series of smaller shocks that led to seeking a professional opinion in the first place. Not only that, but for many Alzheimer's patients there is a shocking precipitating event that leads to the symptoms becoming noticeable. There's a death, a bad fall, a forced retirement, a move, or some other traumatic event. People say "Grandma was fine before Granddad died but now she can't find her way. Maybe this was going on before and we didn't notice but it doesn't seem that way."
However it happens, the journey begins as a shocking event that forces the caregiver (and the patient) out of his or her normally ordered existence into the exile of a terrifying and incomprehensible future. It is important to recognize that both the patient and caregiver are on a journey in tandem if not together. However, the caregiver usually has the mental capacity to eventually make sense of his or her experience while the dementia patient often does not.
How a person responds to this trauma depends on a variety of factors including what kinds of earlier traumas the person may have experienced, their psychiatric history and personality, their ethnic and cultural background and - most importantly - their level of social support. Some people respond by desperately clinging to the shreds of their old life, fighting the changes all the way, reacting with outrage whenever circumstances beyond anyone's control force them to give up another piece of their lives. A dementia patient in this state will refuse to believe there's anything wrong, and might become combative, abusive, even psychotic in behavior. An alternate response is to withdraw into drugs or alcohol or other addictive behaviors such as excessive TV watching, fantasy or delusion. A dementia patient might withdraw into a seemingly impenetrable shell, or prematurely surrender all responsibility for his or her life to another's keeping without cause. All of these behaviors are normal responses when a person is overwhelmed by the threat of their own annihilation.
Phase II - The Descent in the Underworld
The caregiver and patient enter a period where their old ways of approaching life are stripped away. The usual sensory and cognitive channels don't work. The old roles we used to play of husband/wife, parent/child, breadwinner/dependent break apart. We have to confront our deepest fears - our inability to control what happens, disintegration, dependency and death. The world doesn't make sense - nothing prepared us for this. We feel an utter sense of loss, a shattering of our sense of self, a dark night of the soul.
As caregivers we have to confront aspects of ourselves we'd rather not admit to - our anger, frustration and overwhelm can lead to abusive thoughts, unkind words and unloving behaviors. "Til death do we part" can become a death wish for ourselves or for the one we love(d). As we confront our inner and outer demons we fear that if we actually felt the depth of what we are experiencing we might sink into a quagmire of despair and self-destructive or abusive behavior that we would never get out of. Many people stay in this place for a very long time. Fortunately, it is possible to get help and find a way to climb out of the pit.
Phase III - The Hard Road Home
When the person accepts that their old life with all its attendant hopes and expectations is dead, a kind of rebirth becomes possible. After sifting through the ashes of our old life to see what can be salvaged, new life priorities are created. We accept that we have limits and ask for help. We accept that there are no absolutes and to allow solutions to be less than perfect. We know how hard it is to lose everything and learn to have compassion and forgiveness for others who struggle against it. We forgive ourselves for how we react in our fear and pain and accept that we are doing the best we can at all times given who we are and all we have experienced. We discover that some things can't be fixed and that it's alright to walk into the unknown.
During this phase of the journey we have many insights and illuminative experiences but we fall back into the pit many times. We have a larger frame of reference than we had before, one that may be different from the general population. We have to deal with being misunderstood or even marginalized. We may have trouble incorporating what we have discovered about ourselves, our loved ones and the world. We alternate between loving acceptance and angry bitterness, terror and despair. It's not a steady upward climb, but more of a spiral that gets wider and bigger until we've learned all we need to return home for good.
Phase IV - Home
Does one ever make it home? Yes, but it might not feel that way for a long time. A lot of caregivers think that when their patient dies or is sent to a nursing home that their problems will be over. That couldn't be further from the truth. Although there may be a sense of relief as some of the burden of care is shifted or removed, this period of time should be thought of as a transition at best. For some, the emotional journey has only just begun. At this point, feelings that have long been held in abeyance might come right to the surface, plunging the caregiver into an unexpected place of despair. The year after placing a loved one can be the hardest one of all, but it is also the period when priorities can shift permanently to the process of recovery and reintegration.
Richard Grant reports that the end of the journey is marked by a sense that what has happened has been an essential part of one's spiritual growth. There might be a shift as a formerly irascible and complaining person becomes more interested in loving interactions and present moment activities. There's an acceptance of what lies ahead and a renewing interest in being loving and kind. The desperate need to have others understand also disappears and one is no longer focused on the trauma that has occurred. The past informs one's actions - it might even spur further actions - but it no longer overrides the present moment. In my opinion, all these conditions indicate that enough healing has occurred to say the journey is over.
One is ready to bring the journey to a close by bringing the gifts one has received to other people. Many caregivers go on to do social activism to improve things so no one ever has to go through what they endured. Others write books, create websites or lead support groups to assist others still on the path. Others do a private ritual which is meaningful in their own hearts and bring what they have learned to other life journeys. The one thing these endings have in common is the experience of acceptance and an enduring faith that the most important thing in life - the one thing even an Alzheimer's patient has left when all else has been stripped away -- is the ability and necessity to love.
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© Copyright 2007 Sheryl Karas & Paul Hood
A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.
Caregiving Articles