The question, “How long does Alzheimer’s disease last?” is an honest query, but it belies intense suffering in the caregiver as well as concern for the loved one who is suffering. The answer to such a question is so ambiguous, complex, and impossible that even making a response is treading on quick sand. Why? The caregiver is perhaps needing assurance that this grievous journey will soon end, that a cure will be found, that he/she will finish well, or that help is on the way. Such assurance is hoped for, but can’t be promised. And add to this the guilt often felt with such a quest.

Because the question keeps coming at some point in almost every conversation I have about Alzheimer’s disease, I am addressing it within a mixed milieu of hope and realism.

Every patient is different in genetics, medical history, and current health challenges. For some the disease strikes at an early age (called early onset); for others the disease afflicts one who is older or elderly, and perhaps more vulnerable to medical complications. No sure way can map the Alzheimer’s journey nor project how long it will last before it erodes major body systems and steals a life away. Its murky prognosis is part of the unique devastation of the disease: 3 years, 5 years, 10 years, 15 years . . . or, in our case, an identifiable 12 years.

The process is not a straight line between two points, nor is it neatly packaged in stages which can be identified and labeled. Breathing a sigh of relief for such definitive passages is not possible for the watchful caregiver.

However, after our mother died and I was able to reflect on the experience and talk freely about it, I wanted to write for others who could read our story and say, “I’ve been there”; “I am there now”; or “I know a friend who is facing this experience.” So, my sister and I undertook the task of mapping our own experience in authentic terms.  We hoped, upon reading the book, others could say “I feel understood, more informed, in touch with at-a-glance help, and more hopeful about the future.”

Because our experience and yours may vary widely, where are the touch points for us? Perhaps they lie in how we view the progression of the disease. Alzheimer’s is a progressive disease, and while there are advances and regressions, failures and successes, it could be called a “one step forward and two steps backward” experience.

Lest you are feeling discouraged, I hasten to say there are innumerable joys along the way. The joys can be felt when we accept the diagnosis and make a commitment to look for opportunities to connect with our loved one and to receive help for the journey.

The progression, with all its one-step, two-step motion follows a path I call “The Alzheimer’s Patient Descent.”

Fading Memory: the loss of the graphic pictures of our experiences that enable us to connect past, present, and future; and the disruption of our defining connections with time, people, and things.

Fading Judgment: the loss of brain functions which enable persons to integrate experience, values, rational thought, culture, and presenting circumstances. This loss flaws our ability to make congruent judgments consistent with who we are.

Fading Understanding: the loss of the ability to comprehend and assimilate what is seen, heard, read, or even felt. The result is the diminishing of life to a one-dimensional experience contained in a fleeting moment, and it with little or no meaning.

Fading Natural Responses: the loss of control over one’s body functions and the deterioration of major life systems. Of course, these changes ultimately render a person to mere existence until his/her death.

In future articles, I will share information and help in each of these areas of loss with examples I have experienced, read about, or heard from others.

Note: The tone and concepts in this article are from Please Take Me Home Before Dark. You may want to share your thoughts or interact with others by clicking on the Alzheimer’s Forum button on the Elder Care page.