Our first crisis in dementia care struck a few weeks ago. A seizure, a hospitalization, invasive tests and a horrific drug reaction were the beginning of our experience. But the real crisis was in the understanding of events. The path to survival involved a new story - a narrative of Alzheimer's disease.
An elderly family member came to live with us in January. For several years, she has lived with physical limitations and some mild cognitive impairment. But with support systems in place, she had continued to live independently in her home. After her second major fall, however, she needed substantially more support and came to live with us. She exercised, ate well, and regained some physical strength. Her cognitive abilities also recovered to a limited extent. Nonetheless we all noticed the occasional memory lapses, failures to find words, and confusions. We didn't make a big deal out of these errors - generally ignoring or dismissing them as normal signs of aging. As a cognitive psychologist, I recognized these limitations as mild to moderate dementia. But I couldn't see any reason to label. Why force this wonderful woman to see herself as a dementia patient, as someone with Alzheimer's disease? Why force a change in self concept and self narrative?
Then the crisis struck. Our relative suffered a seizure - her first as far as we knew. During the seizure I made sure she was safe. We called 911 and she was transported to the hospital.
Seizures can be caused by many medical conditions, including dementia. To investigate the cause of seizure, she underwent a battery of tests - CAT scans and MRIs; blood tests and EEGs. These tests can be difficult for anyone and it was pretty clear that she didn't really understand what was happening. After 24 hours in the hospital, she became agitated. At that time neither my wife nor I were there to help calm her so the hospital staff administered a medication to decrease her agitation. Unfortunately, as sometimes happens, the medication had the opposite effect -a paradoxical reaction. She lived through 36 hours of delusions, hallucinations, and extreme agitation. Watching her suffer was one of the most painful experiences of my life.
Eventually the drug reaction ran its course. The tests clarified that dementia was the most likely cause of the seizure. We finally brought her home. Not surprisingly, she returned to a higher level of cognitive functioning when she returned home.
But she continued to remember these horrible experiences and she needed an explanation, an understanding of what had happened to her. She did not know that she had experienced a seizure. She did not realize that she had been hospitalized. But her memory was filled with invasive medical procedures that she didn't understand. She also had vivid recollections of her hallucinations, most of which were unpleasant. She created a narrative to tie these real and hallucinatory experiences together - a narrative of torture by Aryans and terrorists. Since my wife and I were with her through these experiences, we became part of her narrative. She was incredibly angry with us. She wondered how we could have let these things happen to her. She could not understand our participation in her torture. She was confused because she had thought we were good and kind people. Her narrative was a confabulation weaving together real and hallucinated experiences.
For two days her anger grew. My wife and I watched helplessly as she grew more fearful and distrustful. Although you might expect these horrible memories to fade in someone with Alzheimer's disease, her narrative stayed fresh. She rehearsed it and kept her story active. She was trying to understand the truly incomprehensible.
We decided to offer her a different narrative, an illness narrative, the story of her Alzheimer's disease. We explained to her that she had lived through a seizure, been hospitalized, and undergone tests. We described the paradoxical drug reaction and her 36 hours of hallucinations. We told her that she most likely had Alzheimer's disease.
We knew this was a risky strategy. We weren't sure how she would respond to the Alzheimer's narrative. Many people with Alzheimer's disease and other forms of dementia deny they have a problem. They don't recognize or remember any symptoms. Even when they do know they have a disease, individuals with Alzheimer's experience difficulty telling the story of their disease. Alison Phinney (2002) described the illness narratives of several individuals with Alzheimer's. All acknowledged they had Alzheimer's and could tell partial narratives. They experienced particular difficulty recalling and integrating their symptoms into their narratives. Phinney noted that the ability to provide a narrative fluctuated as their understanding varied from day to day. She also found that people often co-narrated their stories with caregivers.
We were fortunate. Our relative accepted and adopted the Alzheimer's disease narrative. This narrative provided a way for her to understand her recent experiences. The narrative also allowed her to understand other things she had noticed about herself. As understanding appeared, the anger disappeared. We experienced a tearful reunion as a loving family. She now describes herself as having a disease. The memories of her hospitalization have apparently faded. The Alzheimer's narrative also gives my wife and me a way to integrate and understand our experiences as caregivers.
A narrative is a powerful thing. A narrative not only makes sense of the past, but also allows one to see the self in the future. The problem is that we all know the future of the Alzheimer's narrative: gradual decline and the expectation of future difficult episodes. We know that we will have wonderful moments as well. Having this narrative, even with the known end to the story, has been a blessing. The narrative provides an understanding and a feeling of resolution. In addition, this shared narrative improved and repaired our damaged relationship.