What was it like to look for care when few in the medical establishment understood Alzheimer’s disease? What would it be like today to face a care system without sufficient aid or advocacy from the social work profession?
In a unique article published in the journal Health & Social Work, Brian Arthur Roberts, MSW, BSW, RSW, recounts a personal story of having to seek care for his mother as she began to suffer dementia resulting from Alzheimer’s. In gripping detail he recalls trying to find his mother when she had wandered off, and of having to deal with a medical establishment that did not yet understand the disease, nor seemed to care.
Roberts uses the techniques outlined by Arthur Frank is his book The Wounded Storyteller, to first express the “chaos story” of his mother’s dementia and the lack of adequate care for her condition; then to tell the “quest story” of his subsequent ability to get a correct diagnosis of his mother’s condition, and then to find the needed care, and equally importantly, the requisite funding for that care. The article emphasizes:
- The need for correct diagnosis of medical conditions
- The need for adequate funding to care for those in medical need
- The need for social workers to be involved in medical cases to help patients and their families navigate the medical care system
Having these three elements in play go a long way toward alleviating some of the suffering experienced by those with medical issues, as well as their families.
The story, now complete, has remained untold in its entirety these past many years. On reflection, I feel as if the illness story related here is a narrative told for two: my mother and me…. I am the “wounded storyteller” … I have gained a voice in the writing of this story, possibly for the first time, and have also healed personal wounds left open for far too long. This twofold illness story therefore is both a chaos story and a “quest story” …. A chaos story, as previously described, has no promise of a cure; a quest story assists in creating a transformative process through the experience of illness. This article, then, outlines my quest story. The pain and suffering I endured as a young man needed to be suppressed for me to provide appropriate care for my mother and grandmother, and so I denied myself adequate time to process events and grieve. In the telling of this, my quest story, after these many years, I have gained a sense of closure.