She seems to struggle with recognizing me, her memory stolen by that cunning and tenacious thief - dementia. She has lost most of her cognitive abilities and often parrots back what is said to her. Pearl appears to reside more and more in some kind of an inner world. Is this a good place to be, or should her family keep trying to pull her back into the realities of this world? Suddenly there is so much to question. The only thing I now know for sure is that Pearl is still my beloved mother-in-law - a precious pearl to me.
As a psychiatric home care nurse, I have always had the notion that persons with dementia suffer from a lack of quality of life. The disease process robs the sufferer of the capacity to make sense of the world. The resulting confusion and anger appear to wreak havoc on the sufferer. I have cared for many older adults who have developed depression and anxiety as they realize their dementia is an irreversible and progressive disease. I have felt despair over their apparent loss of quality of life.
A GRADUAL DECLINE
My experiences with Pearl have taught me to question my assumptions about quality of life in someone with dementia. Pearl's dementia began gradually as many dementias do. First it was some short-term memory loss that, fortunately, was compensated for by her lifelong habit of list-making. In time, impaired judgment and forgetfulness about the gas versus the break pedal, for instance, resulted in four auto accidents in 1 year.
By then, Pearl's dementia had become a family affair. With every passing day, Pearl lost a little more of her once-treasured independence. Eventually, she lost her husband of 63 years, and the family feared she would shortly follow. To our surprise, Pearl temporarily bounced back and became involved in some of the activities available through her retirement home.
Gradually, however, we began getting calls from the retirement home informing us that Pearl was wandering the halls in the early morning and fretting, "I don't know what I'm supposed to be doing." A trip to the physician revealed a urinary tract infection (UTI) which, with treatment, led to a temporary lessening of confusion.
Pearl's decline had been, at times, precipitous, interspersed with tiny upswings. Recurrent UTIs occurred, primarily because she was insensitive to or unable to articulate dysuric symptoms. Monthly urinalysis specimens helped alert the nursing home staff and physician to the need for treatment. She required a percutaneous endoscopie gastronomy (PEG) insertion because of dysphagia that resulted from generalized cerebral lacunar infarcts and her inability to tolerate an nasogastric tube without restraints.
The family was faced with the decision to insert the PEG. The alternative was that Pearl would continue to get aspiration pneumonia if she was allowed oral feedings. The family had to face this ethical dilemma. The vision of Pearl choking on food outweighed allowing her to die without medical intervention. In hindsight, the decision may not have been in Pearl's best interests.
A FOREIGN ENVIRONMENT
Future experiences with the medical establishment continued to intrude on Pearl's comfort. According to physicians, it was necessary to hospitalize her after an apparent episode with a pulmonary embolus that caused her to become dyspneic and cyanotic. We watched with feelings of impotence as she struggled to gain comfort in the foreign environment of the acute hospital setting. The tubes, unfamiliar surroundings and people, and the intrusion into her body with invasive procedures created stress for Pearl and for us. She could not comprehend what was happening to her.
I realized that the acute care focus of the hospital environment is not oriented toward the needs of individuals with dementia. Pearl did receive adequate acute care for her medical needs, but her soul and comfort were not addressed or nurtured. The night she returned to her nursing home bed, with its attendant feel and smells, she immediately relaxed, became more responsive, and her grimace transmuted into a smile.
A JOYFUL SOUL
Pearl was always a loving and giving wife, mother, mother-in-law, and grandmother. Her joie de vivre expressed itself in the love she showered on family - the obvious center of her life. Dementia did not rob her of this joy. Her eyes have retained their sparkle throughout. But it was her smile - like Helen of Troy, whose beauty launched a thousand ships - that continued to captivate us and illuminate her soul.
Looking back, Pearl used a lot of denial about her cognitive decline. As nurses, we often try to help patients face reality, but in Pearl's case, the denial helped her to contìnue with her rosy attitude. When we asked how she was, she always replied, "Fine!" most likely because she wanted to be fine.
I wonder if persons with dementia become more introspective as they retreat into their inner worlds. Someone like Pearl who has always been a social and extroverted person may welcome the withdrawal into self at the end of life - not as an escape, but rather a rounding out of her existence. As John Bagley so poignantly shared in his observations of his beloved wife who experienced Alzheimer's disease, "The power of creation seems so much more important than memory; almost as if it could now contìnue independent of it" (1999, p. 264).
PEACE FROM WITHIN
Maybe dementia has granted Pearl the opportunity and ability to find comfort, to create, and to define herself from within. Pearl is now comfortably ensconced in her inner reality. Perhaps we infringe on her search for inner peace when we expect her to respond to our reality.
As nurses we strive to orient persons with dementia to their surroundings and provide external stimulation through talk, music, movement, and relationships. Yet Pearl has taught me to question the importance of such interventions, not that individuals with dementia do not gain from external stimulation. I merely suggest that residing in their inner world should not necessarily be viewed as negative, psychotic, or depressed. Loss of memory and cognitive abilities from dementia may not be symptomatic of the loss of quality of life.
So now I am at the end of my tale, even though the story has not ended. Pearl, in her wisdom, has taught me that the altered state resulting from full-blown dementia may not be as desperate as it appears. Does Pearl have quality of life? We don't know. Only Pearl knows, and I hope that some day she will tell me.
Postscript: Pearl died peacefully on March 1, 2002 with her loving family at her side.
- Bagley, J. (1999). Elegy for Iris. New York: St. Martin's Press.