"God, Give us the grace to accept with serenity the things that cannot be changed..." - Reinhold Niebuhr
In the context of Alzheimer's care, spirit and science unite in this familiar prayer, informing us that acceptance is what research reveals to be the most healing balm for caregivers. But, similar to all spiritual endeavors, acceptance involves a challenging journey.
Our first challenge comes from the harsh realities of Alzheimer's disease that cannot be changed. Although these realities have the potential to foster feelings of helplessness and hopelessness, even within the most enlightened souls, striving to accept them will ultimately help us cope. Alzheimer's is terminal -- once the process of Alzheimer's disease has taken hold, the course of brain deterioration that will ultimately lead to death cannot, at this time, be stopped. The diminishment and the losses are ongoing, and can continue for up to twenty years. The costs of time and money can be enormous to individuals and to society. Our energies can be drained and our fears are often heightened.
This disease, literally, can bring caregivers to our knees. But this is not necessarily cause for despair. Here -- in this posture of surrender -- we have the opportunity to deepen our spiritual practice of acceptance and to open our hearts to unexpected possibilities. Through openness, we may be surprised to discover that not all realities about Alzheimer's are harsh. In the midst of relentless decline, there are life-affirming realities to be acknowledged and accepted as well.
Our loved ones are not completely lost to this disease. Again, I turn to science. Researchers inform us that people with Alzheimer's remain exceptionally good at emotions throughout the entire course of the disease process. Even people in the end stage of Alzheimer's experience and express their feelings; and although they lose cognitive memory along the way, their emotional memory remains remarkably well in tact. They may not remember exactly who we are, or even that we have visited, but they will remember how we make them feel. Most importantly, I've found in my own experiences that people with Alzheimer's retain the desire -- and the capacity -- to love and be loved, which I believe is the defining feature of personhood.
Another acceptance challenge that caregivers encounter is within us -- the necessity to acknowledge and embrace our own feelings about the ways that Alzheimer's disease has changed, and continues to change, our lives. On our knees, we can begin this process by sharing with God, deeply and honestly, through the ancient Hebrew prayer practice of Lament as demonstrated often in the Book of Psalms.
There is a structure to the Lament. The first part of the process requires us to express, without editing, our truth to God. This involves courage. We often prefer not to admit some of our feelings to anyone -- or even to ourselves -- because we have been socialized to judge as inappropriate what some refer to as "negative" feelings. But all of our feelings are valid, and God is always available to hear what's in our hearts, even if human ears cannot or will not hear.
When I lead retreats for caregivers, participants are invited to identify an experience or feeling that weighs heavily on their souls. Then -- in the tradition of Lament -- they are given permission to "rant" about their fear, heartache, anger, or grief. For 90 seconds. This can be a profound experience of catharsis and cleansing, especially when it's time limited and doesn't allow us to sink into self-pity. A sincere rant enables the next parts of the Lament -- praise and thanksgiving -- to naturally flow into our hearts.
In the midst of the losses and burdens of Alzheimer's, finding reasons to praise and thank God is not exactly easy, but it is possible. My Lament can sound like this: "Why me, God? Why did I have to leave my life in Boston and move to Iowa to take care of Mom? Oh, but she said my name today. She knows I'm here! I'm happy and grateful that I didn't miss that word, that moment of connection! Thank you for guiding me to come here."
Benedictine and Zen monk, David Steindl-Rast invites us to be grateful for all that happens in life. To be perfectly clear, he's not even remotely suggesting that we give thanks because our loved ones have Alzheimer's. He's encouraging gratitude because, in the midst of the diminishment of this disease, we have the opportunity to do something to make a difference.
As it turns out, we are not helpless to relieve the suffering of people with Alzheimer's, most of which is caused by isolation. We can provide companionship in various ways -- silent if need be. We can offer comfort through a smile, a touch, or a hug. We can assist people with Alzheimer's in realizing their potential by walking, exercising, or attending activities with them. he ways for relieving their loneliness through loving attention are as plentiful as our time and our hearts allow.
Alzheimer's disease gives us countless opportunities to be grateful for the gift of knowing that we can make a difference. For example, we can lobby Congress for more research, participate in fundraisers for finding cause and cure, demand that care centers and home-care providers become trained to deliver specialized care, and promote social awareness so people with Alzheimer's can be active in their communities.
Our challenging journey toward acceptance can transform our personal pain and loss into meaningful, healing experiences for our selves, our loved ones, and others who are touched by Alzheimer's disease. For this healing, transforming potential we give thanks and praise.