Plan ahead

How Millions of Dementia Patients Can Avoid Unnecessary Suffering at the End of Life
By Rebecca Moss 

One day in April 2004 my husband of 45 years, L. Howard Moss, III, laid down for a nap, woke up, did not know who I was, and never knew again.

This was our abrupt entrance into the world of dementia. Not Alzheimer's, with its slow development; dementia of a different cause, but the eventual progression was the same. The neurologists could advise us only that he would never regain what was lost.

I became a caregiver in an instant and threw myself into providing him all the warmth and safety and bits of happiness I could, and at first, he could manage simple self-care tasks.

However, my highly educated scientist husband not only did not know his wife and family -- this condition is called "Capgras syndrome" -- but he had also lost what are called "higher functions." In other words, he was unable to understand even simple things, such as how to make a telephone call or turn on a radio.

Even in his illness, he put forth the "mask of sanity" we humans use to face others; he was docile and cooperative, but I slowly came to realize how he suffered, not knowing and unable to learn who the people around him were and their intentions toward him.

I was able to caregive for four years as his abilities declined, but when I could no longer meet his needs I was forced to place him in a facility which cared only for dementia patients. And for four more years, I observed almost daily what he and the other patients experienced on their descents to eventual death.

A psychiatrist rendered his pharmacologic services, attempting to soften the anxieties and confusions and terrors that each faced, some quietly, some hostilely and aggressively. The intentions of the staff were kindly, but everything possible was done to prolong this existence, which I came to think of as "pseudo-life." And I came to a horrific realization.

As a retired physician, I would not have thought that there was a worse fate than painful terminal cancer, or end-stages of multiple sclerosis or ALS. But now I know better. Nearly 15 million people provide unpaid care for Alzheimer's or other dementias and about 60 percent of the caregivers are women, according to the Alzheimer's Association.

As a result of my husband's nightmare experience, I learned that you can add a dementia provision to your advance directive or living will to help to avoid the kind of unnecessary suffering that he endured at the end of life.

Most advance directives become operative only when a person is unable to make health care decisions and is either permanently unconscious or terminally ill; there usually is no provision that applies to a person who suffers from severe dementia, but is neither unconscious nor dying.

The dementia provision specifies what life-sustaining treatment, food or fluids you want -- or do not want -- to receive if you encounter the onset of severe dementia. (You can get a free sample dementia provision by calling 800.247.7421 or visiting: www.compassionandchoices.org.)

Our society is slowly recognizing that when death is inevitable, it is only humane to allow a choice to end the suffering if the person desires it. God and nature have decreed that we are mortal; we can only honor life by preventing the suffering of the weakest among us, for whom death is inevitable.

Moss, M.D., lives in Sanibel Island, FL and is a supporter of Compassion & Choices, the nation's leading end-of-life choice advocacy organization.