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What I Learned From My Husband’s Final Illness

What I Learned From My Husband’s Final Illness

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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.

Footnotes
2.
Guide for the Perplexed 3:24.
Sara Tzafona currently lives in north-central British Columbia, where she is working on various writing projects.
Sefira Ross is a freelance designer and illustrator whose original creations grace many Chabad.org pages. Residing in Seattle, Washington, her days are spent between multitasking illustrations and being a mom.
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Anonymous NY June 14, 2017

Holy Sparks Sara,

Thank you.

In humility you desperately wanted G-d to work in your spirit and heart to find purpose in suffering. And, yet, these very words of struggle, wrestling, the tears, questions without answers that causes all caregivers to press and press on when human strength gives way. You came face to face not only with your sheer dependency upon our G-d but your human frailty and limitations too.

In the Words of Isaiah; "He is near to the broken-hearted, those crushed in spirit.He will not snuff out a smoldering wick."

The "holy sparks" have appeared by your pen, an offering of vulnerable, pure and honest words. These words have become to every caregiver a healing balm. As caregivers we know we are not ALONE.

We have been ministered to by the Holy One who is kind to see and hear us in our fragile state, grief and trials, making us know He is truly there and understands. Reply

Anonymous Guam August 4, 2016

You wrote so honestly and beautifully. I am sure it was especially germaine to someone who is a caretakeer for a loved one with dementia. It really could be written for anyone trying to deal with a stressful relationship. Because its not always good, we are not always in touch with Hashem- but we have to hang in there anyway and do what we can and hope that it is enough. Thank you. Reply

Anonymous California July 12, 2016

Thanks! Thank you...I had bookmarked this weeks ago and meant to read it. Boy, it came at the right time after a tough day. Five years a caregiver for my mother with dementia. Thank you, Sara for sharing your story. Reply

S Katz NY July 1, 2016

Yashar Koach Powerful Reply

Zakiyah Fielding Colorado June 30, 2016

Your story I read your story (that seems like such an inadequate word) regarding the death of your husband. I lived through a kind of hell too. My husband was blessed to have lived 11 years and not to have had Alzheimers, but it was hard 11 years. I was able to work for several, but I thought I would die myself. When he passed, i had to make the 'decision' and it was horrible. Just horrible. So I know how you feel. I have been there, and have done that. Blessings and Light to you. Reply

Kate Alaska June 30, 2016

Thank you Sara Today would have been our 43rd wedding anniversary, but we made it to shy of 40 after 13 years of being a 24/7 caretaker. I consider your writing here 'today's unexpected present' because, as I sit here in tears now, you wrote what was also my heart 'going through' it all. I also hang on to the one 'I love you' midst all the anger episodes and praise G-D that he allowed me to be present for his last breath, waking me from my every 2 hour alarm sets. I am just now coming on the upside of healing - thank you for your precious gift. Reply

Jessica Ramer June 29, 2016

Deepest sympathy. Bless you for the years of care you gave your husband. Reply

Kim Johnson Augusta GA June 29, 2016

Thank you Sara for sharing your personal experience. Not experiencing the same thing, but my husband is going through rough times.
Depression, PTSD from military service,bouts of memory loss. It's hard for him to share even with his doctors let alone me. Keeping my eyes focused on God is vital for me. It's hard for me to share with others at what we are going through.
I think I've found confidence to go share with a counselor even with a tight budget. Thanks once again. I pray God's blessings over you. Reply

Anonymous Arizona June 28, 2016

Thank you!
My experience was similar, but I could not put it into such eloquent words.
Thank you again for bringing a little "spark" to my heart.

I am a visitor to this website doing a little study with Dr. Chigal and was so pleased to read your article.

Thank you again, Reply

Anonymous June 28, 2016

Thank you for reminding us 24/7 careers that we're not alone. I know what you meant by "my exhausted brain" , we seem to have a common language. One loving word or a gesture during those moments of temporary clarity from a person with mental challenges is much more appreciated than empty words from others who are "sane". It's important to at least have a creative outlet and to remember to take care of ourselves. Reply

S Uk June 28, 2016

Thank you Thank you, for sharing this intimate part of your life. I cried reading this because of the wonderful blessings of love around you in your trying times, and even though you did not feel you were fully engaged with prayer and lighting candles for Shabbat, you nonetheless continued and it is due to this, I felt, your blessings from HaShem continued to flow.

The article reminded me to be aware of those around us or even those we will never meet or know, who are Ill and isolated from people. If we kept a little place in our prayers for them hopefully, HaShem will send these people blessings of help and support.

I pray you continue to go from strength to strength and your loving, supportive guiding article will give strength to others coping in adverse circumstances. Thank you once again. Reply

Anonymous June 28, 2016

Thanks for sharing. I am deeply moved and touched. Due to lack of knowledge of the English language, but even in my native language, I cannot express my feelings towards you regarding your life experience. I think you did a great job. Reply

Anonymous June 28, 2016

thank you for sharing your story, the words ...and know that none of us are immune from rogue thoughts and words (i just had to look in the dictionary what rogue means) and yes i was with my partner who suffered from hernia katheder heart insuffiency and CLL (leukämia) and feetproblems all the holocaustproblems and couldn't sometimes understand his reactions but it was just his fear to lose me i slept with him during all hospitalstays nearby on 2 chairs b u t i would have lost immense if i wouldn't have done it it was this love which i found in this partnership now i know after 2 years of his dead why he reacted in this way Reply

Anonymous June 27, 2016

Beautiful words of encouragement for those of us going thru hard and trying situations with those we dearly love.

Thank you... *:-) Reply

Anonymous Sacramento Ca June 27, 2016

What you learned Thank you for taking the time to write this and as Proverbs 12:24 says...talking it out with us. We are on the same path and this helped my today. Blessings. Reply

Anonymous Tx, USA June 27, 2016

What I learned from my hisband's final illness Toda Mrs. Tzafona for your words. I sat hospice with my mom and now am primary caregiver for my dad. I cannot imagine the pain you went thru seeing your spouse disappear before your eyes. I know the pain I felt watching my mom die of cancer. And i know the pain that surrounds me as we deal with his brain trauma and resultant dementia. Yesterday my dad who could fix anything when i was young struggled to color a picture for me. While i celebrated his efforts i also cried. The man i knew as Poppa, is no more. And the person inhabiting his body is a stranger to me. But he relies on me to take care of him and his finances, even when he has no idea who i am. The feelings of guilt and second guessing are constant and awful. My salvation is knowing i am at least attempting to shine Hashem's love to my dad. And while he may never understand my pain, one day he will understand Hashem's love for him. And that helps keep me going. May Hashem grant you peace and memories of good times. Reply