HANDLING THE TRUTH:

A PASTOR'S PERSPECTIVE ON ALZHEIMER'S AND CARE GIVING

The following article was written by Rev. Aaron Fulp-Eickstaedt for Agenda magazine. In this article, the pastor shares four Unpleasant Truths and three Eternal Truths about Alzheimer's.

Unpleasant Truth #1:

Alzheimer's is a progressive disease. It has been well established elsewhere that there are many causes of memory loss and dementia, some of which are temporary and reversible. However, once you become reasonably certain that you are, in fact, dealing with Alzheimer's, it does no good to pretend that it will go away. There will be good days and bad days at first - but the disease is relentless in its attack on a person's mental capacity. Eventually, there will come a time when the one with Alzheimer's will not even recognize his or her closest kin. As a pastor, I have seen those who suffer with the disease and their caregivers put off making difficult, but important, choices until after the one cared for can have any rational say in the matter, sometimes with tragic consequences.

Unpleasant Truth #2:

Alzheimer's leads to loss of control in those who suffer from it. The truly horrible nature of this disease lies in its ability to unravel its victim's personality and functions. You will find, as its stages progress, that the person in your care will more and more require you to make decisions on his or her behalf. Just as a mother takes the responsibility of making decisions and setting limits for her infant child, and that responsibility gradually decreases as the child grows into an adult, the caregiver's responsibility to make decisions and set limits for the person with Alzheimer's will steadily increase as that person's mental functions decrease.

Unpleasant Truth #3:

Alzheimer's often provokes anger and suspicion in those who suffer from it. Because the disease brings on such a tremendous loss of control in the person it afflicts, he or she understandably feels anger and a certain amount of vulnerability. Unfortunately, that anger and suspicion is most often vented on the caregiver. It is not the caregiver's fault that the one with Alzheimer's is losing his or her memory, or that decisions must be made on his or her behalf, but it is the caregiver who gets the anger. When one is on the receiving end of anger and suspicion, it may be helpful to remember that anger and suspicion are natural consequences of the disease.

Unpleasant Truth #4:

Caregivers have limitations, just like all human beings. More than once I have heard a spouse or child vow, "I will never put my loved one in a long-term care facility." And I have seen folks, with God's help, care for a loved one with Alzheimer's at home until the very end of the person's life. But this has often been a great physical, mental and emotional cost to the caregiver or caregivers. More often than not, there comes a time when (for the sake of the one with Alzheimer's as well for the caregiver) a care facility or a team of outside helpers must become involved. It is just too exhausting to be awake night and day to keep him or her from wandering, or to constantly care for the person's most basic needs. Now for the good news: the eternal truths that can serve as handholds for the caregiver.

Eternal Truth #1:

Loving someone means acting in their best interest, whether they like it or not. Most students of the Bible would agree that God sets limits and provides us with challenges because God loves us, not because God hates us. My wife and I have discovered that our children don't always like the limits we set for them, but it would be less loving for us to avoid setting limits. Similarly, it is less than loving to put off making difficult decisions because they make us uncomfortable, or to fail to provide a safe environment for our loved ones because they will get angry.

Eternal Truth #2:

The person with Alzheimer's is, and will always be, a child of God. One of the horrifying facts of Alzheimer's is that when it progresses to its final stages, the person it afflicts has totally lost the capacity for reason and speech. Some people have said that the ability to reason and speak is what separates us from the animals. I would disagree. What separates us from the animal is that we were created in God's image. That truth endures no matter what disease does to our mind or our body.

Eternal Truth #3:

God's grace accepts us despite our limitations. Many Presbyterian worship services acknowledge this liturgically every Sunday through our prayers of confession and assurances of pardon. Sunday after Sunday, we remember that "all have sinned and fall short of God's glory" (Romans 3:23). Again and again we are reminded that God's grace is amazing and greater than all our sin. Caregivers would do well to remember, even when they feel guilty, that it is not a sin to recognize our limitations. It is no sin to say, "I can't do this on my own anymore." And if God's grace forgives us of our sins, how much more will God's grace envelope us when we admit our limitations? If you can handle that eternal truth, you'll be more likely to handle the unpleasant truths Alzheimer's sends your way.