"Supporting the Alzheimer’s Community"
The Theological Mandate to Welcome All of God’s Children
By: Avi S. Olitzky, Jewish Theological Seminary of America
What is it “to know?” To know empowers the individual. To know spreads love. To know also spreads hope. To know engenders a sense of fulfillment. But when a person is forced to say “I don’t know,” his or her world crumbles. When one does not “know,” his or her will to exist is often lost.
This “not knowing” leads to a loss of independence. “Not knowing” is the common anguish of every Alzheimer’s survivor. We must use the term survivor because every moment spent living, for both those with Alzheimer’s and their family, is another day not given over entirely to the disease. Alzheimer’s is a dementia that is regrettably ever-present among seniors, and eventually ends in death. Both those with Alzheimer’s disease and those caring for individuals with AD are survivors, and need our support.
Slowly, the 4.5 million Americans who have Alzheimer’s begin to “not know.” Those with Alzheimer’s face this new necessity of relying on someone else and the cessation of independence. And it is terrifying. Most people do not fear death as they grow older; they fear this inescapability of relying on someone else. The most agonizing part of Alzheimer’s disease is this dependence. This is true for both the person with Alzheimer’s and the caretaker. It is a constant struggle between the revelation and the concealment of the emotions that are wrapped up within each forgotten moment. We must ease that fear and ease that struggle. We must be a feeling of safety and security for those with the disease and their relatives—and be pillars of support on every side.
The Alzheimer’s Disease Education & Referral Center teaches us that “at first, the only symptom may be mild forgetfulness, which can be confused with age-related memory change.” However, we should be careful not to immediately confuse this mild forgetfulness with AD. We should be aware when people are not able to solve simple math problems as they had been. When people have trouble remembering recent events, activities, or the names of familiar people or things, we should take notice and be there to console and share in the frustration, even if these could merely be signs of aging.
As both time and the disease progress, we, on the outside looking in, will recognize how forgetfulness begins to interfere with daily activities. We will be called upon to remind our loved one or friend how to brush one’s teeth or comb one’s hair. We will need to hint at names and events, as our friends and family with Alzheimer’s will begin to fail to recognize familiar people and places.
We will stay strong and available as our neighbors with Alzheimer’s begin to have problems speaking, understanding, reading, or writing. And in those late stages of Alzheimer’s, we will stay calm when our friends or family are anxious or aggressive, or wander away from home. Eventually, we are the loved ones who are relied on for total care. And we must finally be in the “know” and understand their struggle.
This can be hard for caregivers and can affect their physical and mental health, let alone their family life, their job, and their finances. Often these caregivers feel like they are prisoners to their loved one’s AD. Yet no one need be left alone. We can be there to stay with the AD sufferer and give the caregiver a much-needed respite. We can also establish adult day care centers in our houses of worship so that the caregiver can work during the day or take care of their own personal needs. If that is not enough, the Alzheimer’s Association helps to shoulder the burden with chapters nationwide that provide educational programs and support groups for caregivers and family members of people with Alzheimer’s Disease. We must make everyone aware of these resources and support such critical work.
There is no cure for Alzheimer’s Disease. Nevertheless, there are available treatments that may help prevent some symptoms from becoming worse for a limited time. There are also some “medicines that may help control behavioral symptoms of AD, such as sleeplessness, agitation, wandering, anxiety, and depression.” By finding ways to treat these symptoms often makes our family and friends more comfortable and makes their care easier. Furthermore, the availability of a medication can result in the caregiver feeling like they are doing something in taking control of the disease. We can always help in the research by contributing financially as well as spreading awareness.
Alzheimer’s is here and it is widespread. We must wake up to this pain that is in our midst. For too long, we have pretended not to know. For too long, the doors of our houses of worship have been closed because we have not expressly offered support to those families who are affected by Alzheimer’s. What happened to “Do not stand idly by the blood of your neighbor” (Leviticus 19:16)? We have been afraid. We have misunderstood. We have not been informed of what happens in a family coping with Alzheimer’s. And we have ignored. The time to open those doors and become aware is now. Alzheimer’s is far too pervasive to be left unnoticed and unattended.
How can we, those looking in, “know?” How can we, trying to learn and trying to teach, trying to help and trying to hope, know what it is like to live a life affected by Alzheimer’s—the fight of our family, of our friends, and of ourselves.
One common portal of guidance and knowledge within the religious community is Scripture. Through this doorway, we see that impairment and illness is ever-present, both in our communities and in our texts. We do read, (and can relate to,) the emotions surrounding our ancestor Isaac and cases of mistaken identities. We can relate to the feelings of isolation and separation in the discussions about purity and impurity in the book of Leviticus. However, with regard to biblical text, the systematic loss of memory characterizing Alzheimer’s is absent. Where can we then turn in our struggle with Alzheimer’s?
Ecclesiastes is not a book often quoted or referenced in religious circles. Poignantly, Ecclesiastes is part of a genre of biblical works labeled wisdom literature. Wisdom literature is called such because it is the result of human experience, of this human “knowing.” At best, in the Jewish forum, during the festival of Sukkot—a time for gathering—members of synagogues join together and read Ecclesiastes alongside with the regular liturgical cycle. The motif of gathering is driven home as the text is ritually read aloud by the community. Christians look at a verse or two in Ecclesiastes as a message hinting at resurrection, as well as a scriptural motivator on discouraging days. It is also often used at a variety of Christian funerals. But what more can we do to use the text in our lives? Let us move beyond the ritualized use of the text, and look at Ecclesiastes together as a community for another reason.
Ecclesiastes is an old man writing about his own life, his own years, and old age in general. We must illumine some of these verses with the sentiments of those elderly, those with Alzheimer’s, and their family around us. By doing so, we will raise up Ecclesiastes as a path to understand the emotions associated with old age and Alzheimer’s—felt by the person with Alzheimer’s, relatives and friends. Even with this learning and this elucidation of text, we must not only open our doors even wider, but we must go to those who need us. Ecclesiastes’ life-outlook will be our first step in meeting those with Alzheimer’s where they are, and not forcing them to come to us. We must also notice that at the end of the book, Ecclesiastes’ writings are much sharper and more provocative with regard to our quest to “know.”
Just as the fear of dependence permeates the soul of those growing older, we hear Ecclesiastes charging the elderly against this fear with might and drive in the first half of chapter 10. “If the ax has become dull, and he has not whetted the edge, he must exert more strength…” (Ecclesiastes 10:10). Ecclesiastes calls out the weary and aging to work harder and to force more. We read in Ecclesiastes’ voice a preempted attempt to prevent dependence, to prevent disability, to prevent helplessness. When those with Alzheimer’s and their families do not have the strength and courage needed to keep pushing, to “exert more strength,” we will be that drive. We will hold the hands of the families and call to check in on the relatives. We will help the elderly to exercise their minds, and to keep track of their days. When the ax becomes dull, we will be the razor-sharp edge.
Even as Alzheimer’s progresses, we must be there with an open mind, an open heart and open ears. “A wise man’s talk brings him favor, but a fool’s lips are his undoing. His talk begins as silliness and ends as disastrous madness. Yet the fool talks and talks” (Ecclesiastes 10:12-13). Now that we “know,” what once appeared to us as the wise suddenly becoming foolish, we realize now it is truly the wise ailing. The “fool” talks and talks, and we will listen, and not consider that person a fool. We will allow the talking, both from the person with Alzheimer’s and whoever needs a listening ear. We will not allow one’s lips to be his or her undoing. We will let statements that do not make sense pass us by, and still engage in conversation. We will make sure conversations between hurting relatives take place, and we will make sure those same relatives do not let the concept of foolishness enter their thoughts. In our old world of not “knowing,” this disease was about “disastrous madness.” Now that we are learning and will strive to welcome and help, Alzheimer’s is a person reaching to grab for anything—merely to hang on. We will be there to catch that person if he or she falls, and to help him or her keep climbing.
Still, Ecclesiastes warns us of the years to come. We stay brave. The fear of the future, the fear of Alzheimer’s, and of dependence, resonate once again: “So appreciate your vigor in your days of youth, before those days of sorrow come and those years arrive of which you will say, ‘I have no pleasure in them’; before sun and light and moon and stars grow dark, and the clouds come back again after the rain…” (Ecclesiastes 12:1-2). We hear the somber voices growing older with fear and we are that smidgen of hope that will take away the fear.
At the very end of the book, Ecclesiastes presents the reader with a list of metaphors that generations of scholars have had trouble unfolding. We must view them plainly as the ache of losing the ability to “know:” “When the guards of the house become shaky, and the men of valor are bent, and the maids that grind, grown few, are idle, and the ladies that peer through the windows grow dim, and the doors to the street are shut—with the noise of the hand mill grown fainter, and the song of the bird growing feebler, and all the strains of music dying down” (Ecclesiastes 12:3-4). Let us help our friends and families around us cherish each day. Let us add light to those darkening times, and song to those deafening silences. We will not let weariness and fatigue situate. We will not let anyone surrender. We will not stand idly by; we will squeeze out the pain of the passing days of the disease, and we will wipe the tears and remember the toothbrushes.
As we in our communities take up this text and learn more and more about each other and the challenges we face, we will finally happen upon one of the most important and most prevalent lines from Ecclesiastes. Ecclesiastes 12:8 is a negative outlook on life: “Utter futility, said Kohelet (Ecclesiastes), all is futile!” We need to read this verse and recognize the hate and anger in those coping with Alzheimer’s. We will wince at the sharpness of the fury and resentment in their voices—for society, for religion, for God, for us, for them. We must overturn and reverse the sentiment, proving to the world that all is worthwhile, that all is necessary. Just as we will add sweetness to the bitter and light to the darkness, here too, we will be the reason to live and we will be the meaning in the emptiness.
Ecclesiastes is just the first step to “knowing.” However, it is a big first step. As we continue to grow comfortable, we need to reach out to those persons with Alzheimer’s and their families. We must search for ways to be those pillars mentioned before: giving of our time and of our pockets, helping to find every new treatment out there, in whatever way possible. We now “know” that Alzheimer’s Disease does not only affect a limited few. It affects all of us. And in the same vain, it is now our time to return to our neighbors and to our families, increasing this knowledge and awareness.
It is our turn to take “Do not stand idly by the blood of your neighbor” to heart, and extend the open hand to the previously unrecognized individuals and families who need us now more than ever. 4.5 million with Alzheimer’s—who are ready to quit or who do not remember the past week. 4.5 million with families who are tired and need a rest and need our support. 4.5 million beating hearts crying out for proof of why existence is not futile. 4.5 million of our brothers and sisters of humanity who came before us to bring us to where we are now. We stood on their shoulders once before, it is now our turn for them to lean on ours.
NIH Publication No. 03-3431 September 2005 www.alzheimers.org/pubs/Alzheimers_Disease_Fact_Sheet.pdf
Ibid.
Ibid.
Author’s translation
All translations of the Hebrew Scriptures, unless otherwise noted, are taken from the pocket edition of the new JPS Hebrew-English Tanakh. ( Philadelphia: The Jewish Publication Society of America, 2003).
© Copyright | 2006