I am my mother’s advocate. Together with my sister, I manage her household, supervise her caregivers, pay her bills, and run her errands. Most importantly, we champion her rights, providing her with a voice at a time when, tragically, she can no longer stand up for herself due to the decade-long ravages of Alzheimer’s disease.
My mother used to be my role model and my best friend. Passionate, strong, courageous and intelligent, she was a brilliant scholar and a loving parent and grandparent, the person I could turn to for advice and companionship at any time.
Now the tables have been completely turned. The child who started out entirely dependent on her mother has matured to become the one on whom her mother depends. Since my mother has been afflicted by illness, I constantly feel her absence like a gaping hole in my life. She may still look like my mother and remain physically near, but mentally and spiritually, she is no longer there for me.
When someone has Alzheimer’s, there is plenty of time to say goodbye. Deterioration occurs slowly, with changes almost imperceptible at first and then becoming only gradually more noticeable. Alzheimer’s is a cruel illness, as my late maternal grandfather noted, telling my mother when, sadly, he was in the throes of the disease himself, “I am losing my I,” by which he meant that he was losing what made him whom he was as a person.
Moreover, gradually much of the world forgets its sufferers. Many friends stop writing or visiting; it is almost as if people are too embarrassed and don’t know how to deal with someone who can no longer respond except with a smile, a look or a touch.
Yet, already in the third century, Talmudic Rabbi Joshua ben Levi had pointed out that just as the fragments of the first set of tablets of the Ten Commandments shattered by Moses were placed in the Ark of the Covenant along with the new tablets, so too should we “be careful” to respect “an old man who has forgotten his knowledge through no fault of his own” (Babylonian Talmud: Berakoth 8b).
Even earlier, the second century BCE Jerusalemite scholar Ben Sira wrote in his Book of Wisdom: “My child, help your father in his old age, and do not grieve him as long as he lives. If his understanding fails, be considerate. And do not humiliate him when you are in your prime” (3:12-13).
We are taught that we are meant to “honor” and “respect” our parents in the same way as we revere God as partners in the creation of life. Yet, the first century sage, Rabbi Shimon bar Yochai, acknowledged that this Fifth Commandment was the hardest of all to obey (Tanhuma Ekev 2). As Rabbi Emeritus of Temple Emanuel in Grand Rapids, Michigan, Dr Albert Micah Lewis says, this Commandment “teaches that even though this kind of caregiving may not feel natural or even fair, it must be provided”(Person H.E. and Address R.F. (eds) 2003, That You May Live Long: Caring For Our Aging Parents, Caring For Ourselves, URJ Press, New York, p10).
While most Jewish sources insist upon children personally caring for their parents themselves – and with the right attitude – the medieval scholar and physician, Moses Maimonides, made an exception for children with parents whose minds were severely affected: “If the condition of the parent has grown worse and the son is no longer able to endure the strain, he may leave his father or mother, go elsewhere, and delegate to others to give the parents the proper care” (Mishneh Torah: Hilchot Mamrim 6:10). Chosen caregivers, however, must be able to cheer the patient up (Regimen sanitatis: The Preservation of Youth: Essays on Health, chapter 2).
Long ago my sister and I promised our mother that we would never put her in a nursing home. And we have honoured that promise, convincing her early on to move to the same city where we live and striving to ensure that she continues to reside with dignity in her own home. As card-carrying members of the “sandwich generation,” we have chosen to juggle her needs along with those of our own young families.
While that may not be the right decision for everyone, it has certainly proven to be the correct option for us, and we are fortunate to have had the freedom to be able to make that choice. Our mother can no longer thank us, but I know that she is grateful. Before she lost the ability to speak, she was expressing her gratitude to everybody who helped her, and I am sure she would still be doing so today if she could.
The debate over whether children should provide for their elderly parents from their own income or whether parents need to fund their own care also dates back to ancient times. Scholars were seemingly divided, with rabbis of the Jerusalem Talmud advocating that even poor children must raise the funds to support their impoverished parents (Jerusalem Talmud, Kiddushin, 1:7).
Maimonides argued that only when parents had no money were their financially independent children obligated to support them according to their means, and could even be coerced into doing so by a Bet Din (rabbinic court of law) (Mishneh Torah, Hilchot Mamrim 6:3).
If the children have money but refuse to spend it on their parents, Jewish law allows them to use funds they would otherwise have given to charity, but immediately “curses” them for “humiliating” their parents: (Babylonian Talmud, Mas. Kiddushin 32a). Others go further and compare such a refusal to murder, maintaining that such a comparison is warranted by the fact that the two Commandments, to honor one’s parents and not to murder, follow each other (10th century Midrash, Tanna Devei Eliyahu).
Broadcaster Sandra Tsing Loh said last year on National Public Radio’s Talk of the Nation that the “daughter track is far more open-ended [than the mommy track] and has no rewards at the end except for death” (29 February, 2012).
Even though I would give anything to have my mother back again as she once was, I know that caring for her has taught me to be kinder and more patient, especially in the last few years, when I no longer know if she even recognises me. Sometimes being patient is a struggle in the flurry of everyday life, as I force myself to slow down to my mother’s pace, watching as she chews each mouthful of the meal that has been prepared for her.
As Rabbi Laurie Zimmerman of Congregation Shaarei Shamayim in Madison, Wisconsin, has said, “just by her being, she teaches us the highest form of compassion” (8 October 2008, “Aging and Caring for Elderly Parents”, http://www.shamayim.org/). Renowned Rabbi Zalman Schachter-Shalomi, one of the founders of the Jewish Renewal Movement, has wisely advised: “You may just want to sit and hold the hand of the parent with Alzheimer’s. Communicate on the inside. Something is going to happen in the silence. There is a being behind the brain” (September 2012, “From Age-ing to Sage- ing,” Front Range Living, http://www.frontrangeliving. com/family-health/rabbi-zalman.htm).
Indeed, even though she has forgotten her language, my mother often tries to communicate when she sees me. The other day, one of her longtime caregivers told her she was leaving to return to her homeland. “She looked at me,” the caregiver said, “and I knew she understood.”
If everything else fails, fear can be a strong motivator, as is understood by the Torah: “You shall rise before the aged and show deference to the old; you shall fear your God: I am the Lord” (Vayikra (Leviticus) 19:32). Respecting our parents is the only Commandment accompanied by a reward, which can also be read as a veiled threat: “Honor your father and your mother, as the Lord your God has commanded you, that you may long endure, and that you may fare well, in the land that the Lord your God is assigning to you” (Devarim (Deuteronomy) 5:16; see also Shemot (Exodus) 20:12).
Not only should our fear of God influence how we treat the elderly, but we should also behave towards others as we would like to be treated ourselves. Indeed, on Yom Kippur morning, we pray “Do not cast us off in our old age; when our strength fails, do not forsake us!” (from Psalm 71:9). According to Rabbi Harold Kushner, “if we show honor and respect to our parents when they are old, we will be fashioning a world in which we will not have to be afraid of growing old, a world in which length of days will indeed be a reward and not a burden” (Foreword, xvii to Berrin S. (ed) 1997, A Heart of Wisdom: Making the Jewish Journey from Midlife Through the Elder Years, Vermont: Jewish Lights Publishing).
Meanwhile, I feel rewarded that I am providing my mother with a good quality of life from which she still derives some enjoyment.
Yes, despite everything, she still gets some joy out of life. Contrary to popular misconception, advanced Alzheimer’s sufferers are not vegetables. Although the illness may cocoon them from feeling the full brunt of life’s emotions, they still experience pain and pleasure, peace and agitation. My mother continues to appreciate good food, especially dark chocolate, music, flowers, massage and the warmth of the sun. She may be confined to a wheelchair, but she is not confined to her apartment, attending an adult day care program twice a week, going on outings and visiting with her family.
She is still a human being – even if she has lost her “I”.
Shira Sebban is a writer and editor, a congregant of Emanuel Synagogue, and vice-president on the board of Emanuel School.