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Perspectives on Grieving

Mom Was Still Alive, But She Was Gone.

So Was I Experiencing Grief -- or Something Else?

By Bari Adelman

My mom's Alzheimer's Disease seemed to sneak up on our family. We weren't sure exactly when it hit, but month by month it got worse and worse. Six years ago, as the disease was snowballing, I wrote an essay to describe the experience. Here are some excerpts:

My heart hurts. I just got off the phone with my sweet, darling mom. I have the same experience every week — I call her because I want to hear her voice, and although her voice starts out strong, by the end of our (very short) call, it is a scared, sad, tearful voice.

I wonder what is happening inside her head and heart.

I think mom knows she is talking to me, her older daughter — but she seems to lose her grounding almost as soon as we begin our conversation. She struggles to make sense of why she is talking to me on the phone, why she hasn't seen me in soooo long (when it may have been the day before), and why she can't place where she is.

Mom will turn 83 this November. And for the past five years she has been losing her cognitive abilities. Mom has Alzheimer's Disease, the most common form of dementia, as did her mother and older sister.

And while I still have mom, I am also losing her — day-by-day, minute-by-minute, second-by-second. It's heartbreaking for both of us.

I love this woman with all of my heart and soul. For more than fifty years she has been there for me every single step of the way. This is my beautiful, smart mom, who was a New York City schoolteacher for thirty years, a loyal friend, a fashion lover, and a design aficionado. An amazing wife to my dad for close to 60 years, a fabulous mother to my sister and me, and a devoted grandmother to her five wonderful grandkids. A woman who was liberated way before her time -- who didn't hang out much in the kitchen because she had more 'interesting' ways she wanted to spend her time.

This is the woman who taught me to be strong and independent, by example, and to always stand up for what I believed to be right and true.

But now mom has lost her footing. When we speak, although she knows the love we have for each other is fierce, she's not always sure exactly why or how we're connected. When she comes to my house, she sometimes asks if she's ever been there before – yes, hundreds of times!!!

And so here I sit trying to make sense of the loss of my beautiful, wonderful mom—for whether she is sitting right in front of me, or on the other end of the phone -- she is lost, I am lost, and the world we once knew together is lost.

And though it's not a physical death, it is a death of the world that was—the world that I have known for more than fifty years.

Looking back on the essay, I realize it actually answers the question my blog title poses -- So Was I Experiencing Grief –- or Something Else? It's right there in front of my nose. In my last paragraph, I wrote, "And though it's not a physical death, it is a death of the world that was."

It's there in black and white — it was a death. And I most certainly was grieving. I was grieving every day – in a prolonged and terrible way. Mom moved into a nursing home not long after I wrote the essay, and continued to wither away in front of my eyes for five more years. Although I would visit her often, and hold her hand and kiss her cheek, after awhile she no longer registered my presence. It was heartbreaking – it was agony.

Mom's been gone a year and a half now. I miss her intensely. But the grief I felt upon her actual disappearance from this earth was tinged with a bit of relief for both of us. She no longer had to live the miserable life she was living, and I no longer had to watch her fade before my eyes.

Now when I think about mom, I choose to remember her in her glory, when she was a loving, beautiful person who showered those she loved with care and affection – and who was showered with both in return. She is with me every second of my day, and I hear her voice clearly in my ear as I go about my daily business. I know exactly what she would say and do in almost any given situation, and take great comfort in always having her by my side.

I helped take care of mom until the bitter end, and loved her profoundly all the way through that awful journey. But I know beyond a shadow of a doubt how mom would want to be remembered – and I honor that wish every day of my life.

I urge people going through this journey to honor their pain and suffering, as well as that of the person who is sick. And I urge them to speak of this grief with others who can understand. I was fortunate to have loved ones to share my awful journey with.

My best advice to people in this situation is to seek out a community of people who understand. One such resource is Imagine's wonderful Coping with Illness Program, https://www.imaginenj.org/coping-with-illness/.

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