Archive for February 21st, 2012|Daily archive page

Can there be joy with Alzheimer’s? I say yes

The Well Blog in the New York Times recently featured an essay about lessons the author has learned from his grandmother, JoAnn, since she was diagnosed with Alzheimer’s. Some excerpts:

“Through the haze of our grief, my grandfather Alfred and I began noticing that, along with her memories, JoAnn’s grudges, hurt feelings, worries and regrets were disappearing. In fact, within a year, she seemed happier than ever, more present and at peace. …

“So often, I hear people say they’d rather die than get Alzheimer’s. This is, in part, because they believe the disease will force them to abandon themselves to oblivion. But my grandmother showed me that we are more than the sum of our memories. …”

I wouldn’t say that I agree with everything the essayist, Robert Leleux, had to say in his post. But I have seen the same thing in my mother: She is at peace now, perhaps for the first time in her life. She and my aunt had a complicated sibling relationship as kids. Their parents were alcoholics. Mom, too, struggled with alcohol and depression. She spent most of her professional life unsatisfied. And she was a single mother of three kids.

While there is nothing good about this disease, the fact that she can navigate it from a peaceful place has been a comfort to me and, I hope, for her, too. But Leleux’s piece has provoked some pretty angry comments. Many take issue with the title: “Finding Joy in Alzheimer’s.” Some are offended by the very suggestion that there can be joy associated with Alzheimer’s. I don’t deny them their experiences. Mom – and I – have endured plenty of misery. But having this blog has encouraged me to regularly reflect on my relationship with Mom, and that might be part of the reason that I can also find peace with this part of her life, and mine, as well. I read all 110 or so comments before posting my own:

I am one who has experienced joy with my mother since she was diagnosed with Alzheimer’s in 2005. It makes me sad that there are those who seem to begrudge us our joy. Believe me, I know I am lucky to experience joyful moments with her. They are rare, but occur more often now that she is settled into her anxiety-free life in a nursing home for dementia patients. Mom is obviously very unlucky. I don’t think anyone who can associate a tad of joy with Alzheimer’s is suggesting that this isn’t also the worst possible way for our loved ones to end their lives. But my mom, whose life was fraught with a variety of difficulties, is now more affectionate and loving than she has ever been. She tells me she loves me and that I am beautiful. Every time she says this, I say, “I take after you.” She doesn’t understand, but these affirming exchanges give her some joy, too. She doesn’t know who I am, but our companionship, and her sense that I am on her side no matter what, give her pleasure. Her smiles and laughter, her expressions of satisfaction while eating ice cream, her hand holding mine – these are simple things that make us both feel good. I would wish these same opportunities for joy to all caregivers of people with Alzheimer’s (and the patients, too, of course), but I know that is not the reality. Many caregivers’ and Alzheimer’s patients’ experiences are nothing but miserable, and for that I am sorry.

I doubt my comment will make anyone who is miserable feel better, but I thought the points were worth making.

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