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Alzheimer's and the Changing Experience of Grief

Grief can follow a fairly predictable pattern.  Although different waves of intensity are present at different times, the progress of grief is thought to be somewhat step-by-step.  Grief researcher Elisabeth Kübler-Ross in her ground-breaking 1969 study,On Death and Dying, identified five stages.

  1. Denial— In the first stage, grieving people try to believe that the bad news is somehow incorrect.
  2. Anger— Forced to accept the facts, grieving people become infuriated by the facts.  Misplaced, their anger can turn toward doctors, toward God, or even toward the loved one who is ill.
  3. Bargaining— The third stage involves the hope that a dreadful diagnosis can be eliminated or a lifetime extended by making some kind of deal.  "I promise that I'll go to church every Sunday if..." is the classic example.
  4. Depression— Grieving individuals eventually become deeply saddened by the facts. This deep, lonely and forlorn condition is normal, and does not cause alarm unless it lasts too long.
  5. Acceptance— Resolution marks the final stage as facts are accepted and placed in the a larger philosophical context.  Out of this improving realization, re-stabilization eventually takes place.

With its intensity and stages cycling differently, grief is personal, but the overall pattern of grief is thought to be predictable enough that a "Rule of Six" has been proposed.  For six days after receiving terrible news we are lost in a fog.  For six weeks we are unable to be ourselves.  After six months, resolution and acceptance slowly returns us to our normal life.  Six is not absolute in this rule, but represents approximate time.  This duration can been seen as our pained obligation to someone who has died, an obligation to endure an extended period of mourning.

And Now, The Long Goodbye

Not a new disease, Alzheimer's is receiving greater attention as more and more people grow older and older.  Not automatic, age is the number-one risk factor for Alzheimer's.  The older people get, and the more older people there are in a population, the more the suffering of the cognitive degeneration of Alzheimer's increases.

Alzheimer's is not alone as a slow-moving, long-lasting, terminal ailment.  Doctors have lengthened the years in many diseases also making them a Long Goodbye (The Long Goodbye is the title of a book that traced the decline of Ronald Reagan as he suffered from Alzheimer's).  Where once we fell ill and died quickly, now we linger.  This lingering has changed the experience of grief.

The Changed Experience

New terms for grief have emerged to more accurately describe the different emotional waves associated with diseases that linger for a long time.  People still hurt, but they hurt differently and they hurt along a different time-line. 

  • Anticipatory Grief describes the long years of grinding awareness.  Sadly, we know exactly what a diagnosis of Alzheimer's means.  Where once grief took place after death's finality, now grief begins at the beginning of a diagnosis.  This grief grinds away on our emotions with each passing day, week, month and year, and with each mile-marker of deterioration.
  • Ambiguous Loss is the grief we experience over the loss of the previous person.  They are still with us physically, but they are no longer with us mentally or socially.  How is it that they can be there, but still not be there at all, unable to respond or even react?  There is tremendous sadness in comparing what was to what is. 

Conclusion - A Lingering Grief

Why is it so painful to deal with a slowly degenerating, slowly dying loved one?  The short answer: because it hurts!  The longer answer: because a lingering death requires us to experience a lingering grief.  This means that caretakers for the slowly dying must take care themselves because the physical grind of caretaking is multiplied by the emotional grind of anticipatory and ambiguous grief.   

This also means that the grief experienced at the time of death will be different.  No amount of anticipation can prepare us for the awful moment when death arrives.  Still, after many years of the changed face of grief, do not be surprised if you feel relief.  This relief does no injustice to the dearly departed.  Relief simply recognizes that their suffering has been cut short and that much of your work of grief has already been done.