What To Do When They Don't Know That They Don't Know

Alzheimer's is a dark and cruel disease. It takes from people the one thing that they never consider losing: who they are. For most of our clients battling this disease, the decline is gradual. Over a period of years they become aware that their faculties are failing them more and more frequently. Things they used to know become harder and harder to recall and then vanish completely from their minds. While the toll exacted by this tragic final chapter to some lives' journeys is primarily taken on the life of the patient, the painful difficulties it presents for surrounding loved ones can be equally heartbreaking.

Ronald Reagan once joked about his own diagnosis. "The nice thing about Alzheimer's disease is that you meet so many new friends." This cheerful disposition is not uncommon. For many, the disease begins as nothing more than an increasing forgetfulness; easily to explain and comprehend. For others, there is no awareness of what is happening. These individuals present the greatest challenge to their families in a multitude of ways.

One of our clients who passed away from complications of this disease was a friend of mine.  He was a man with an amazing intellect who, to the very end, could recall intricate details of some aspects of his amazing life. However, he couldn't tell you where his wife was. The fact that she died some ten years before was lost to him. Each day he would ask for her. Each day his family was faced with a cruel dilemma. They could either lie to their father or tell him the truth. While telling him the truth seemed to be the right thing to do, doing so meant that he would relive the tragedy of losing his partner of 45 years. Each time he was told was the first time he heard the news. Eventually, his family got into the habit of just telling him that she had gone out to the store and would be back in a few minutes. His memory of her never waited that long.

For an Alzheimer's patient, truth is relative. There is no right or wrong answer. For an Alzheimer's patient, life exists increasingly in the here and now. Our challenge as family members and loved ones is to attempt to join them wherever they are in that journey. We train our caregivers with that goal in mind. The objective of every day is not to bring a client up to speed on current events. We do not seek to heroically pull someone from the jaws of Alzheimer's. Moments of radical clarity will happen occasionally and we celebrate them when they present themselves. But for all the other moments, for the rest of the days, our goal is to figure out where a client is and meet them there.

When a 93yr old woman tells me on a cold January morning that she needs to get her shoes on, her lunch packed and her backpack ready so that she doesn't miss the bus to school, my challenge should never be to convince her that the bus is not coming. My challenge should be to figure out how to get on that bus with her, even if only in her mind.