Living With Stroke

Leah Eskenazi, Link2Care Specialist

Stroke is the third leading cause of death and the leading cause of disability in the United States. Approximately 70% of people who suffer strokes survive. Seventy-five percent have residual paralysis or weakness. What information is available for post stroke survivors? How can we better understand the post-stroke journey?

An article entitled, The Post-stroke Journey: From Agonizing to Owning, published in the Geriatric Nursing Journal last year offers some valuable insight into the post-stroke experience. A number of books written by stroke survivors were studied for common themes and experiences. As a result, six stages common to stroke survivors were identified. They are Agonizing, Fantasizing, Realizing, Blending, Framing and Owning.

Agonizing describes the first responses generally felt by individuals after being admitted to the hospital. A general sense of shock, fear, loss and impending doom is felt. It was reported that survivors frequently spoke of death-like experiences. They were terribly frightened and are quoted as saying nothing in my experience ever prepared me for this.

The second stage, Fantasizing, involved a search for healing. Survivors spoke of time having a different meaning, existing almost exclusively in the present. They held tight to hope that the stroke was just a nightmare and they would wake up well and whole. There was intense confusion about the current reality of their body image and sense of who they were. As they progressed to the third stage, Realizing, recoverees acknowledged the stroke impact on their body and the expectation of a full recovery vanishes. They often experience profound depression and anger. One gentleman described his wish to die and his resentment at himself for being so helpless. They expressed a feeling of pure exhaustion, both mentally and physically. Those suffering with aphasia said the loss of communication was the most frustrating aspect of stroke.

Blending occurred as individuals began to learn to cope with the effects of the stroke. They saw a glimmer of hope and worked to blend their former way of life with this new path thrust upon them. Survivors expressed struggles with self-image and roles. Many attempted to hide the effects of the stroke. They didn’t want others to perceive them as crippled or dependent.

The next stage, Framing includes steps towards analyzing the individual’s stroke experience within the framework of their life. They look into why they suffered a stroke and began coming to terms with their grief and loss. And the final phase of the six stages is Owning. At this point the stroke survivors take steps towards control and responsibility for their life. They weigh in with their own decisions about their life rather than allowing others to chart a path for them. Self-help is a key component of this stage. Whether it’s participation in a stroke support group or working with a counselor, the exploration of feelings and charting their life course from this point forward is most important now.

Although these stages have not been scientifically tested or validated, they do offer an anecdotal framework for the post-stroke experience from the experts in this area, the stroke survivors themselves.

This article was used with permission of Family Caregiver Alliance.