The following essay reflects on the important question of handling oneís anger as a caregiver while watching
a loved oneís descent into Alzheimerís disease.
by Malia Rumbaugh, MS, CGC
I just got off the phone with Grace1, whose husbandís family is enrolled in our research study. She and others in the family spent most of the night at the bedside of her brother-in-law during his last hours. A sister in this family also died of Alzheimerís just a few weeks ago and Graceís husband is in the moderate stages of the disease. So why was she calling me? While regular updates are very helpful, it is amazing that amidst the devastation of this disease, people reach out to participate in research.
But why? In our genetic studies, we canít promise any direct benefit to our participants. Why add to the tremendous burden of this disease? Of course, the reasons are as individual as our participants. For some, the drive to help others is as natural as breathing. For others it is the fear that catches in the throat; that this might happen to their children or their grandchildren. There is also the desire for a redemption of sorts, to see something good come out of something bad.
Lately though, Iíve been thinking about anger. Anger gets a bad rap and can certainly be destructive. Most of us were raised to be polite, well mannered and considerate people. Some of us even are that way most of the time. Yet how can we not be angry at this disease? As we watch it erode thoughts, memories, personality and so much of what we hold dear in each other, I think anger is a reasonable response. The key is what we do with it.
Mahatma Gandhi is probably not the first person to come to mind when you think of anger, but he knew it well. As he said:
ďI have learned through bitter experience the one supreme lesson to conserve my anger, and as heat conserved is transmuted into energy, even so our anger controlled can be transmuted into a power which can move the world.Ē 2 - Gandhi
I think this is what I see sometimes in our research participants and their families. Itís that glint in their eyes,that steely note in their voice. It hints at a determination to beat this disease even if they themselves may not know the victory. And whatever your reasons for participating, it is because of people like you that we will find a cure.
Reprinted with permission from the NCRAD Update - Volume 11, December 2007.