Till Death Us Do Part? A Look at Marriage Rituals When a Partner Has Alzheimer’s Disease

By Rabbi Richard F. Address

As you read this, somewhere a man or woman is sitting alone in their car, having just left their spouse—a life partner who resides in a long-term-care facility for people with Alzheimer’s Disease. Navigating traffic, he or she decides the time has come to seek spiritual advice. When the appointment time arrives, the person sits down and looks anxiously into the eyes of the priest, minister, rabbi, or imam. Slowly, the story unfolds.

“You know,” the person says, “I love my spouse and visit almost every day. And when our kids come home they visit, too. Last year, when the stress of working and caregiving became too much, my kids gave me a trip and on that trip I met someone who, coincidently, lives near here, and we became friendly. So when we got home, we exchanged e-mails and then we met and our friendship grew. It became very important, as I was feeling alone, and gradually the friendship evolved into something more and, to tell you the truth, we have become intimate.”

They go on. “And I am overwhelmed with conflicting feelings. I cannot talk about this with my children. I am uncomfortable talking about this with our friends with whom we shared years of dinners, engagements, trips, and the like. I need to know if I am doing something wrong. My spouse hardly knows who I am. I am a healthy seventy-year-old, I go to work several days a week and have my life, and I am lonely and have needs. So tell me, am I wrong? Am I committing adultery?”

People Seek Guidance, Not Forgiveness

In my work with the Union for Reform Judaism’s Sacred Aging Program, I have come to learn that this scenario is more common than many would admit. Various questions come to mind: Do religious congregations and denominations have a responsibility to address this issue? Do they have a responsibility to speak about this issue openly and to create a document or ritual that would, in certain contexts, permit the well spouse to seek a relationship outside of the traditional understanding of marriage?

Would this be a proper use of ritual, or does it demean and cheapen the concept of what a religious ritual should be? As some have suggested, is it such a personal matter best left alone, allowing the reality to exist in the chasm of privacy? Even so, as a man quietly said to me after a recent presentation at his congregation on this issue, “If my congregation is not sensitive to my journey and my life situation, what meaning does my affiliation have?”

Rituals help link individuals to a moment, a community, and to the “mystery” that lies beyond. Rituals reinforce the fact that a person exists within a certain context and history. Rituals allow for an individual to transition from one phase of life to another, often liberating that individual for change; for rituals, like relationships, must be open to evolution. “…rituals belong to human history. Ritual process belongs to historical process. It is not some kind of detached thing remote from the events that it influences. Agents of transformation, rituals are themselves transformed by the histories to which they belong” (Driver, 1991). The revolution in longevity is providing new kinds of opportunities to aid in this process of personal and cultural transformation. New challenges exist in the lives of the people clergy serve; many will come to us to ask not for forgiveness but for guidance, drawn from their faith tradition, that can help them navigate situations that often are not of their choosing but that have been brought about by the randomness of life. If religion and faith are to have meaning and relevance, shouldn’t our communal leadership be open to creating rituals that can support people in times of challenge?

Empathy for a Changed Older Population

An underlying question that is often raised in the discussion of creating new rituals centers around the special nature of a ritual. If we create rituals for everyone who wants one, rituals that reflect a personal interest or specific moment, then do we not take the risk of devaluing the concept of ritual? In my community, rituals have been created and published that reflect such moments of personal choice and need as the removal of a wedding ring following the year of mourning for a spouse; the celebration of olderadult cohabitation without marriage; and older adults who find each other following divorce or spousal death and choose, for a variety of reasons, not to marry but to live together (Address and Rosenkranz, 2005).

Are rituals such as these for everyone? No. Do these new life situations require that clergy appreciate they may need to develop counseling skills that are more empathic to the needs of a changed older adult population? Absolutely.

These scenarios, and the one that introduced this article, also speak to the changes we are seeing regarding marriage. The reality of divorce and the fact that increasing numbers of people do not see marriage as a “forever” enterprise, or even a viable option, have changed many dynamics surrounding the issue of marriage. Could the scenario of the spouse with Alzheimer’s or severe dementia give rise to a reinterpretation of adultery?

With extended life spans and a greater emphasis on health and wellness, along with an American cultural attachment to personal autonomy, our society may be entering a new phase in how we see married couples when they are faced with the reality of living with such a challenging diagnosis. I believe congregations and clergy need to wait and examine each case before rushing to judgment.

This fact was brought home to me in a conversation I recently had with a man who was living the scenario. His wife was institutionalized with advanced Alzheimer’s. Several of his children lived thousands of miles away. He became involved with someone quite some time after his wife’s diagnosis and move into the local Alzheimer’s facility. His children had difficulty in dealing with and accepting their father’s companion, creating stress as a major family event approached. That was the reason for our conversation.

Here was a man conflicted; he loved and cared for his wife, he needed his children and the sense of family, and yet he also yearned for intimacy and companionship. He made his choices and noted to me that “this is our family’s journey, and although there may be similar touch points, no two journeys are the same.”

Caregiving and the Pain of Isolation

Being alone can be destructive to anyone, especially a caregiver. But is there any way to have a religious community be open to intimate relationships outside marriage in the case of the well spouse? An article in theWall Street Journal (Mundy, 2009) explored this issue from the perspective of various religions. The article mentioned the rise in the number of Alzheimer’s cases, and the fact that people were often seeking relationships outside of marriage in response to their isolation. The director of the New York chapter of the Alzheimer’s Association noted: “Alzheimer’s causes a profound loss—that of the marital partner…. While spouses may still feel their old bond in the disease’s earlier stages, once it progresses, that connection is lost too…. It’s not sex as much as special friendships, such as being held at night, that the well spouses miss most” (Mundy, 2009).

Genesis 2:18 reminds us that it is not good that we are “alone.” The Hebrew word used in the text, l’vado, contains within it much more than a feeling of being by one’s self. It also speaks to a sense of psychological and existential isolation that is not uncommon to individuals in extended caregiving situations. It is not good, or natural, for us to remain in such a state. The issue of caring for a spouse is never in doubt; the issue of caring for one’s self is.

The book of Ecclesiastes (4:9−11) elaborates: “Two are better than one, because they have a good reward for their toil. For if they fall, one will lift up his fellow; but woe to him who is alone when he falls and had not another to lift him up. Again, if two lie together, they are warm; but how can one be warm alone?”

As you might expect, there is no unanimity on this. Rev. Richard Gentzler, who directs the Center on Aging and the Older-Adult Ministries for the national United Methodist Church, was quoted as saying that: “We have made the marriage vows for ‘better or worse.’ That holds in sickness or in health. I recognize the pain of the wife or husband, but sexual [relations] would be adultery” (Mundy, 2009).

The question of how a religious community can or should respond to this new and growing reality is no longer hypothetical. These situations are taking place now in every one of our communities. Are things so clear, so concrete in life, that clergy and congregations can close off all dialogue? Or can they remember that while certain actions or rituals may not be for everyone, each family, and each case, represents a nuance on what it means to be a caring human being.

The workshops on ritual creation that were part of the development of the Sacred Aging project formed the foundation for our approach to the subject. In discussions with people from around North America, the struggle of caregiving always came up, especially in dealing with Alzheimer’s. At every session, someone would speak to me privately or volunteer the information that they, or their friend, had lived the reality of seeking intimacy while still married to their institutionalized spouse. Invariably a heated discussion would ensue, with many seeing this action as disloyal, adulterous, and sinful. And, as the discussion waned, those who had experienced this reality— or were currently living with it—quietly spoke up and said, in so many words, that “until you have to experience this and live with it, perhaps it is best to reserve judgment.”

A New, Novel Agreement: The Open Letter

“An Open Letter to My Spouse,” created by a psychologist in California, is a formal attempt to create a document that would address the issue of “permission” to seek relationships outside of marriage in the context of advanced Alzheimer’s Disease. The document, structured as an agreement to be jointly signed by husband and wife, recognizes that if such a catastrophic situation should come to pass, that mutual respect and love will allow for care, and it also provides permission for the other spouse to seek comfort from someone else.

The document acknowledges the love and commitment the partners have for each other and allows for open dialogue between spouses. In the event it is determined that the case is not reversible and the other spouse is alive in body “but significantly compromised mentally or physically,” the statement is made to “please find someone you like who will be available to provide the emotional, intellectual and physical support and companionship that I then cannot provide you” (Fitzgerald, 1999).

The “Open Letter” is designed to be reviewed and signed jointly and could, with clergy involvement, open the possibility of new forms of pastoral counseling. There would be challenges to consider, however. When should a husband and wife sign this? How often should it be reviewed? Is this concept just as applicable for the thirty-year-old whose spouse is injured in an accident and remains in a persistent vegetative state? Is there a difference between such a person and the seventy-year-old confined to the Alzheimer’s facility?

Defining a State of Limbo

The attempt to redefine adultery in light of Alzheimer’s Disease and related dementias presents the religious community with an interesting challenge. How do you try and reinterpret one’s tradition in light of such a new reality?

One colleague offered a suggestion that is drawn from classic Jewish tradition. He sought to review and re-imagine the concept of the agunah, which refers to a legal category within Judaism. It defines a status of a wife whose husband has disappeared. The usual context was within wartime, with a husband who has not returned. This leaves the wife in a state of limbo, unable to acquire a bill of divorce, since the husband cannot be present.

My colleague sought to reinterpret the concept of this legal limbo state as allied with the well spouse whose husband or wife has “disappeared” into the limbo of Alzheimer’s or another dementia. The ritual sought to create a bridge that would allow the well spouse to cross between his or her two worlds of reality.

As he explained it, the ritual was “close to divorce because it serves as a way of freeing an individual from certain bonds, but in other ways it serves as a renewal of marriage vows because it reaffirms the promise to take care of their partner…. The primary purpose of this ritual is not meant to give someone the authority to go out and seek an extramarital relationship, [but] it is a way to ritually acknowledge that the person they married is no longer present, even though their body is still very much alive.”

Designed to be done with the well spouse and the rabbi present, the ritual goes on to affirm one’s commitment to care for the spouse who is ill and to “ensure that he [or] she has the resources that [they need] to survive, despite the fact that our lives now take different paths” (Bazeley, 2009).

A Controversial Discussion

Such a discussion may not be for everyone or every religious tradition. Yet to ignore the reality that an increasing number of people who are members of church, synagogue, and mosque communities are now or will be dealing with this situation is to perhaps deny them the opportunity to seek comfort, support, and guidance from their tradition. How then can we approach such circumstances within a sacred framework?

A fellow rabbi, writing on this issue for a class on “Judaism and Aging,” noted that “one truly needs to understand that the case in point is not necessarily that of an adulterous partner, but rather of a transition in life, one in which the nature of the relationship between two spouses changes profoundly; a healthy partner assumes the role of caregiver in what once may well have been a loving, supportive relationship. In that case, as in every other major crossroads in life, clergy should support the healthy spouse in every possible way—be it to enlighten him, relieve his guilt, or even bring the subject out into the public discussion arena; simply engaging in the conversation—the breaking of the bond of silence around the issue can itself be of tremendous help” (Shmilovitz, 2005).

In the coming decades, this issue of caregiving for a spouse with severe Alzheimer’s or other dementia will raise profound challenges for individuals and families, and the clergy that support them. The power and importance of religious ritual, as a means to bring a sense of meaning and spiritual foundation, cannot be underestimated. In the aloneness of the struggle, the oasis of faith and tradition can bridge the chasm of doubt, fear, and isolation.

Rabbi Richard F. Address, D.Min., is the senior rabbi of Congregation Mkor Shalom in Cherry Hill, N.J. He formerly served as founder and director of the Department of Jewish Family Concerns for the Union for Reform Judaism, during which time he created the program on Sacred Aging.

References

Address, R. F., and Rosenkranz, A. 2005. To Honor and Respect: A Program and Resource Guide for Congregations on Sacred Aging. New York: URJ Press.

Bazeley, P. 2009. “A Ritual Commemorating Becoming an Aguneh/Agunah Due to Illness.” Project for a class on “Sacred Aging” at Hebrew Union College–Jewish Institute of Religion, New York City.

Driver, T. F. 1991. The Magic of Ritual. San Francisco, Calif.: Harper.

Fitzgerald, W. F. 1999. “An Open Letter to My Spouse.” Parent Care Advisor. Horsham, Penn.: LRP Publications.

Mundy, A. 2009. “Of Love and Alzheimer’s.” Wall Street Journal, November 3.

Shmilovitz, Y. 2005. “It Is Not Good that the Man Should Be Alone: The Case for the Well Spouse of an Alzheimer’s Patient Who Seeks a New Relationship.” Project for a class on “Sacred Aging” at Hebrew Union College− Jewish Institute of Religion, New York City.

Editor’s Note: This article is taken from the Fall 2011 issue of ASA’s quarterly journal, Generations, an issue devoted to the topic “Ritual in Later Life: Its Role, Significance, and Power.” ASA members receive Generations as a membership benefit; non-members may purchase subscriptions or single copies of issues at our online storeFull digital access to current and back issues of Generations is also available to ASA members and Generations subscribers at Ingenta Connect. For details, click here.

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