Writing the Final Chapter: A Torah View on Facing Mortality 

Here is a fictional version of an email I recently received. 

Dear Rabbi, 

I need you to teach me how to pray. 

My father has had early-onset dementia for some time. When it began, I knew exactly what to daven for. I was davening for it to be reversed, or at least for it not to deteriorate. I was davening that he would not have to suffer the loss of his memory, let alone the loss of his mind. I was davening that it wouldn’t happen the way the doctors said it would. 

But now it has happened. It is clear to all of us that his cognitive function is only getting worse, his need for aides and his inability to care for himself only getting more acute. He is not going to get better. 

We are not allowed to pray for miracles. So what is left for me to pray for now? 

I write back to this woman about davening for Hashem’s compassion. I tell her that everyone’s experience is different, that the disease can develop more quickly or more slowly. I tell her to daven for all that he is likely to encounter along the way: that his aides should be kind, that his overall health should remain strong, that the ancillary conditions that can accompany this condition should not be too severe. It is all true, and all eminently practical. 

But most of all, what I want to tell her is that life does not end with a diagnosis of dementia. 

Life changes, often drastically. Dreams and expectations can be shoved to the side. Basic needs to which we had never given much thought can become incredibly time-consuming and deeply emotionally draining. We will have to call on skills that we never called on, and never wanted to call on, before. But there is still life. There is still connection. There is still family and relationship. And there is still tefillah and hope—not hope for a cure, but hope for perspective, for compassion, for appreciation, for joy. 

Finding Purpose 

When someone receives a diagnosis like early-stage dementia, the shock can easily give way to a feeling of helplessness. The knowledge that what is coming is beyond our control to prevent flies in the face of everything we thought we knew about ourselves, our skill and capabilities and independent nature. And spiritually, there can be a similar kind of helplessness. What does Hashem want from me now? Facing the knowledge that my ability is going to be so limited, what does He expect me to do? 

A great deal. 

When Yaakov was nearing the end of his life, the Torah describes this by saying, “vayikrivu yemei Yisrael lamus—and when the time approached for Yisrael to die” (Genesis 47:29). While the simple sense of the phrase is that Yaakov’s life was coming to a close, the literal translation of the words is that his days were coming close to dying. The Zohar teaches that this literal meaning also has something to teach us. When a person comes before Hashem after death, every single day that he lived comes with him. Each day stands and tells the Heavenly court what this person did on that day, whether he used his time productively, whether he took advantage of the mitzvos that came his way, whether he made the most of the different yamim tovim and the different seasons and the different nuances of each month on the calendar. Each day has its own story to tell about us. 

It is human nature that we spend much of our energy thinking about everything except for the day at hand. We obsess over the past and fret about the future. We regret what might have been, and we pour our energy into what might be. What we see least easily is today—the growth we can achieve, the choices we can make, the people we can touch and the people who can touch us. But our Sages are teaching us that today is a terrible thing to waste. 

There is much that is cruel about dementia. But there is also, if not a positive feature, at least a shift in perspective that can be refreshing. The joys and simple pleasures of today become the focus of life—out of necessity, yes, but also because we appreciate them in a way we never could before. And there is so much spiritual power in that way of living. 

For someone facing a diagnosis like this, what Hashem asks is to start to pay attention to the day at hand. Pay attention to the people in your life, to your family and to your friends. Pay attention to the mitzvos you do. Pay attention to the kindness you can achieve with a simple action and a friendly comment. Pay attention to the daf or to the chapter in front of you, not on how many pages there are until the end. Pay attention to the berachos Hashem has sent you and pay attention to how you thank Him for them. 

If there is one mitzvah that models this focus on today, it is tefillah. The sefarim teach us that in the history of the world, there has never been a tefillah repeated. Tefillah is an expression of the way you—the unique person that is you—relate to Hashem in this moment. Every person is different, and every person is constantly changing. The tefillah I say today is an expression of who I am—my ambitions and my dreams and what I am thankful for and what I am striving for. That is not the same today as it was yesterday; it is not the same this afternoon as it was this morning. Tefillah is the mitzvah that gives meaning to our every moment and helps us to see all that is in front of us. 

I was once asked to visit a woman who was nearing the end of a long battle with cancer. I did not know her but her family thought I could be helpful, and so I went to see her. She had made her peace with dying. What weighed on her was her feeling of uselessness. She was cognitively sharp, but her illness prevented her from going out or doing anything that would make her feel productive.  

I asked her if she could still smile at people. She allowed that she could. In that case, I said, there is so much you can do. You can make people feel good with a smile and a kind word. You can give them a little more happiness. That is worth a tremendous amount. 

She lived for a few more months, though I never saw her again. But at her shivah, her family told me that this mission of smiling at people had given her purpose until her dying day. 

There is no sugarcoating the struggles of dementia and its uniquely painful challenges. But if it is going to force us to focus our perspective, there is so much spiritual power in choosing to do that for ourselves. While we are able, we can make sure that each day will come with us proudly. 

Preparing for our Mortality 

It is natural for us to want to look away from our own mortality. For someone who is facing dementia, preferring to be in denial is perfectly understandable. Ramban even teaches us that we are averse to thinking about death because death was not supposed to be part of our world; if not for the Eitz Hada’as, we would not have to face it. A part of us senses that this whole process is unnatural. 

And yet the Torah tells us in so many ways that we should prepare for our own mortality.  

We obsess over the past and fret about the future. We regret what might have been, and we pour our energy into what might be. What we see least easily is today—the growth we can achieve, the choices we can make, the people we can touch and the people who can touch us. 

From a purely practical standpoint, there are many preparations which the halachah encourages us to make. One is supposed to prepare a will and put financial affairs in order. The Shulchan Aruch instructs us to tell our heirs the financial information they need to know: the people to whom we owe money or who owe us money, whether we have assumed any financial responsibilities. Updated for our modern world of bank accounts and investments, of digital passwords and information stored on the cloud, there is a lot to be collected so that those who need to know can access the information they need. If a will was written a long time ago, it is worthwhile to review it and update it for present circumstances. It is essential to have a halachic living will in place, which appoints an agent and a rav to collaborate in making health care decisions when that becomes necessary. It is a mitzvah to make one’s own burial arrangements, as Avraham Avinu bought his own kever in the Me’aras Hamachpelah.  

But spiritual, emotional and mental preparations are just as important.  

There is an old tradition to write what is sometimes called an ethical will. A financial will contains the instructions our heirs have to know about our belongings; an ethical will contains the instructions that our heirs have to know about our values, our spiritual heritage, our understanding of what is meaningful and important. In truth, this is what Yaakov Avinu did when he gave his children berachos before he died, giving them the lessons and identifying the strengths that were unique to each of them. It is what Moshe Rabbeinu did before he left us. It is what Dovid Hamelech and Rabban Yochanan ben Zakkai and Rabbi Yehudah Hanasi did before they left this world.  

In fairness, the dramatic deathbed scenes we read about in the Torah are not the reality for most people. And writing a formal statement of important principles is not in everyone’s wheelhouse. But there is so much that can be done to share a piece of yourself with those who will want desperately to remember how you were in healthier times.   

You can record a video with stories, with memories, with the family history that only you remember. You can talk about your rebbeim and teachers, the people you admired and who shaped you. You can share your favorite divrei Torah. You can even write notes to family members for future occasions. You can give your children and grandchildren and students the gift of yourself. 

The Imperative for Teshuvah  

And then there is the preparation we can do for ourselves.  

We learn in Pirkei Avos that we should do teshuvah the day before we die. The implication is that one never knows the day of death, so one should do teshuvah all the time. But when mortality becomes a reality, the imperative for teshuvah is clear, and the opportunity it provides is restorative.  

Rabbeinu Yonah teaches that reflecting on the day of death is one of the most effective ways to inspire teshuvah. For someone who is actually facing the day of death—even when that day might be years in the future—his teaching needs no commentary. In an instant, goals are clarified and distractions dissipate. To be sure, there can be intense disappointment about what will not be accomplished and deep regret about opportunities that went unfulfilled, not to mention shame about actions and words that should never have been. But the magic and gift of teshuvah is that what we are today is more important than what we were yesterday. We stand before Hashem as the people we are today, defined by the middos and actions and values that define us now. Teshuvah is not an exercise in despondence; teshuvah is the antidote to helplessness.  

And what is perhaps the most difficult aspect of teshuvah can also be the most impactful: the repair we can do to our relationships. Certainly, this requires much wisdom and tact. We are an unforgiving generation, and when years of hurt or mistrust have accumulated, they are not easily erased by a sudden change of attitude or expression of remorse. And yet teshuvah means saying who we really are and who we are not. Acknowledging that we have done wrong is not the last step in healing, but it must always be the first. 

And if asking for forgiveness is important, offering forgiveness is just as impactful.   

I knew someone who had suffered through a succession of medical challenges without clarity about their cause or trajectory. One day, he received the news that answered all the questions with devastating finality: he had a terminal illness for which there was no cure. He absorbed the news with equanimity. But at the first opportunity, he cleared the room and took out his phone. He needed to make a phone call to a relative with whom he had long had an estranged relationship. He wanted to offer his forgiveness and to ask for forgiveness. He had clearly planned this moment in his head for a long time. And the sense of peace he exuded after he did it was clear as day. Resentments and grudges and disappointments are the emotional blockage of the heart. The opportunity to clear them is a gift. 

It is obviously easy to read and write these suggestions in the safe and objective pages of a magazine. Thinking in these terms, let alone executing them, in the midst of an illness that includes so much uncertainty and confusion and fear is another matter. But it is still true that every stage in life offers its own opportunities for growth. One of the cruelties of dementia is how it gradually forces an independent person to become a deeply dependent one. Teshuvah is the deepest expression of independence. The preparations we can make are our chance to take this stage of life into our own hands. 

A rabbi once shared a conversation he had with a congregant who was facing a very challenging diagnosis at a relatively young age. The congregant, a special and spiritual man, wanted to know what spiritual approach to bring to his journey. Should he start preparing for his own potential demise, engaging in teshuvah and preparing to meet his Creator? Or was it more proper to throw himself into bitachon and tefillah, to have complete faith that Hashem can reverse any decree and mobilize spiritual forces to daven for his recovery? 

The rabbi told him that he needed to do both. There is much room for bitachon and tefillah and hope. But how could you not want to prepare at the same time? How could you prefer to look the other way until it is too late? He offered an interpretation of the berachah we make before going to sleep: “vehaer einai pen ishan hamaves.” Literally, this means that we ask Hashem to keep the light in our eyes so that sleep does not become death. Homiletically, it can mean that we ask Hashem to keep us aware so that we do not sleep towards our death. Let me not come unprepared to this ultimate journey. 

As my email correspondent noted, the mental deprivation of dementia carries an accompanying feeling of spiritual vulnerability. It is a feeling that can overwhelm both patient and caregiver. And yet there is so much that remains in our hands. There is so much opportunity for becoming better people, for coming closer to Hashem and to each other, for letting go of so much unnecessary emotional and spiritual baggage. There is so much that we can do. 

The Kaddish said at a burial is the same as the Kaddish said at a siyum because each person’s life is a book. Facing the final chapter of our personal book can be painful and bewildering, and even more so when we feel so powerless. But there is so much we can still do to make it meaningful. And we know that Hashem, who helps us write all the other chapters of our book, will help us write this one too. 

Rabbi Daniel Rose is the rabbi of Bnai Jacob Shaarei Zion Congregation in Baltimore, Maryland. He is the former director of Jewish Hospice Services for Seasons Hospice of Maryland and the author of Building Eternity: A New Perspective on the Meaning of Marriage (New York, 2014). 

More in this section:

My Journey with Dementia by Wally Klatch, as told to Nechama Carmel 

Dementia in Halachah by Rabbi Dr. Jason Weiner 

Writing the Final Chapter: A Torah View on Facing Mortality by Rabbi Daniel Rose 

When Dad Has Dementia by Rachel Schwartzberg