My husband died. It had been expected. Four years earlier, he had been diagnosed with heart failure and then Alzheimer’s. After that, he’d had a series of small strokes, each one giving a nudge to the dementia. The doctor had told me to expect his death, and I had. But so much for expectations. It wasn’t until I saw him draw his last breath, his lungs refusing to fill again, that I suspected he had passed. What convinced me,It had been an awful four years though, was the animal-like cry that echoed off the walls of the small hospital where he had been admitted. The cry had come from me. I knew then that he was really gone.

It had been an awful four years for him, but also for me. It was devastating to watch as the cruelty of the mental illness began to steal his independence and the identity that he had established for himself. He had been a teacher at one time, and in his later years he’d lived within the realm of books. But the disease encroached on his reading and writing abilities, and he cried when a stroke finished them off. And I cried with him.

As his condition deteriorated, “demons” took up residence in the empty spaces of his brain, causing rapid mood changes and anger, an anger that eventually escalated into violence. I was frightened; this wasn’t a symptom I could work around or walk away from. The police collected him the first time and took him to the hospital, where he was sedated. The ambulance took him the second and last time, when he collapsed from a stroke before he could find anything that he could strike out with. He spent 11 days there before dying—11 days in which he wouldn’t meet my eyes or make any attempt to communicate, as he thought that I had betrayed him. After all, I had always promised to care for him until the end. He simply didn’t understand, because he couldn’t remember the violence that had led to the hospital doors.

ChassidicWhat was it that G‑d expected from me? philosophy talks about “holy sparks,” shards of G‑dly light that we must discover and elevate through transforming our mundane existence into something G‑dly. Throughout my husband’s illness, I tried to look for those “holy sparks.” What was it that G‑d expected from me as we became engulfed by the darkness that seemed to control our lives? What did it mean to redeem those sparks if I even found them? I really had no idea. Spiritualizing any part of the experience seemed impossible at the time. After all, I was running on autopilot and pure adrenalin. And I was so very sleep-deprived. I was in so many ways numb. But I tried to do the best that I could, hoping that somehow, even if by accident, I would do a little bit of redeeming.

It wasn’t until after my husband’s death that I began to receive a glimmer of what it all might have meant.

I learned about miracles. Oh, not the “splitting the sea” kind of miracles, but the ones that enabled a man whose last years had been fraught with anger to find periods of peace. My husband had lost his speech as a result of a full-blown stroke, but there were times when he could speak some words very clearly, words that I will carry with me forever. He told me that he loved me, and he apologized for the difficult times. Yes, they were simple words, but words that enabled a marriage to heal and love to be rekindled, a love that I thought had long since flickered out. Yes, anger still stalked him, and his mood could turn on a dime, but his words of love convinced me that it was the illness that caused him to lash out verbally and physically. He never would have done that before the illness, and that realization helped me to heal after his death.

I learnedI learned about love and acceptance about love and acceptance from my son, daughter and two teenage granddaughters. They made me feel loved and valued, and more importantly, they did the same for their father. They did whatever they could for him, wheeling him around the block in a wheelchair, bringing him his favorite foods, speaking words of appreciation and love, or just sitting quietly at his side. They kept me on track, helping to erase the guilt that always seemed to plague me. It was their constant love that kept my head above water, and it sustained me after my husband’s death.

I learned about compassion, empathy and pure goodness. My circle of friends were constantly there, urging me to get help, providing a wheelchair, walker and shower stool, and perhaps most importantly, just listening. There was one 90-year-old friend who called daily just to tell me that she loved me and to be strong. I was overwhelmed by their goodness and generosity of spirit, and I will always treasure the blessings that they brought into my life.

Our doctor also demonstrated his abundant compassion and empathy. He called to check on my husband as well as me, and he even made house calls. He also seemed to know instinctively when I’d had enough, sensing that my nerves were shattered and that hopelessness and fear had begun to wrap me in a shroud. He refused to release my husband from the hospital that last time, even though I would have taken him home if it had been approved. “There is too much of a danger,” he had said. And after my husband’s death, he helped me realize that the fear and confusion and panic attacks that I was experiencing were a result of the four years of intense stress, and that I would regain my emotional health.

I learned about caregivers. Although our situations may vary, our anguish, stress and outright fear are similar. Oftentimes, we feel isolated, we agonize over every decision that we make, and then we second-guess our decisions: Are we being selfish, or should we be doing more or doing it better?

I learned that a caregiver’s need for nonjudgmental listeners is a high priority. Our Torah agrees, saying that “if a person has worry in his heart, let him relate it to others.”1 Good advice, because, for me at least, there was a lot of worry and fleeting thoughts that attacked during my most vulnerable moments—thoughts that were never acted upon but nevertheless rushed through my exhausted brain, leaving guilt in their wake. And I realized that as caregivers, we need to discuss our situations with others who will listen to our innermost thoughts and help us put our accumulated guilt in perspective. A good place to start is theAs caregivers, we are grieving in increments Alzheimer’s support groups, where we can share our experiences in a safe and nonjudgmental atmosphere, listen, and know that none of us are immune from rogue thoughts or words. And we also know that our “confessions” will not leave the confines of the support group. But since it may be hard to attend meetings, we may need to turn to friends and family for support and understanding.

I also learned that as caregivers, we are grieving, mourning the loss of our loved ones in small increments. It’s a grief that could linger for 10 years or possibly more, until our spouse or parent is finally released from the fog that has become a living shroud. And then we grieve some more.

I learned about the importance of routine. Oh, it wasn’t just the rising up and lying down, or the meals, the walks and the drives, or even the photo albums that I spread out on my husband’s lap in hopes of capturing a memory. It was also about the religious practice: the candle-lighting, the praying, the blessings and the reading of Psalms. I did it all, and I felt nothing. It was as if my soul had frozen in time. But I still did it because I knew that the rituals and prayers were my lifeline to G‑d, and necessary for my survival. Although I didn’t feel His presence, I knew that He was there, walking us both through the experience. G‑d chose a very difficult road for us, but as Maimonides said, “Ease destroys bravery; trouble creates strength.”2 And yes, I grew in strength, and as I look back I’m astounded at what I was able to do then, and what I’m able to do now.

But it wasI still wonder if G‑d was fair to him at my husband’s expense, and I still wonder if G‑d was fair to him. And even though I may never know the reasons for my husband’s suffering—or anyone’s, for that matter—I realize that G‑d does, and that has to suffice. I have to believe that what happens to us is less important than how we react to it. I did the best that I could at the time, and so did my husband. And yes, I wish things could have been different, but at the same time, if my husband had to experience the hardships and suffering, then I am glad that I was able to be there for him and care for him for as long as I could.

Did I redeem any “holy sparks”? I don’t know. But I now realize that the difficult road is capable of bringing out the goodness in all of us. And maybe that’s what it’s all about.