Miriam Green
Finding Joy in Alzheimer's

The Guilt That Never Goes Away

It is the day after Yom Kippur and still there is guilt.

A friend confided in me last week that she’s having difficulties with her 94-year-old mother who is in nursing care. The Hebrew-speaking staff don’t understand her when she speaks English; her voice is too soft to hear; there are few pursuits that engage her intellectually (and yes, she is 100% cognizant of her surroundings); her physical needs are being met but there’s no one to talk to.

“Maybe Alzheimer’s isn’t such a bad thing,” my friend joked.

We’ve had this debate before. As we age, is it better to lose your mind or lose your body? Of course, there is no right or wrong answer. All we have are the cards we’ve been dealt and how we cope with them. And while I would give, oh, maybe an arm and a leg to have my mom back again—to converse with her as if she were still my mom—I can’t reverse the damage that Alzheimer’s has wrought.

Part of me is comforted by the fact that Mom doesn’t remember where she is or what’s happening to her. When I arrive at her care facility, she usually greets me with big hugs and kisses, and we while away our visit in simple pursuits, singing together, traipsing the hallways, and throwing a ball to each other.

Mom resides in a care facility only a 20-minute walk away from my house. I visit her several times a week. My dad visits her every day.

Yet there seem to be moments of clarity when Mom does react to her surroundings. “Who are these people?” she demands as she sees the other residents. Or, “I’d like to go home now.”

It doesn’t matter that Mom can’t formulate where home is (probably back in London where she grew up) or that she thinks her parents (who passed away many years ago) are there waiting for her, what is significant is that she has expressed an idea that suggests thought processes. In other words, her brain is still functioning at an intermittent level.

We have never signed Mom out of her care facility. It would be unreasonable and unnecessarily painful to take her home. There is no possibility of turning back the clock. What would we gain by bringing Mom home? What, if anything, would she gain? Would she be happy or despondent, angry or frustrated? I try to picture bringing Mom into the house occupied by her possessions of many years; she would not remember a single one of them.

A few years ago, when Mom was living at home, she stood in her living room—her living room, a place where she’d resided for the last 20 years!—and stated, “This is not my home.” What could we expect if we brought her “home” today?

The idea of having Mom with us to complete our family circle at a Shabbat dinner or family celebration is emotionally laden because the reality is so different from what I idealize. We would have to be with her constantly and deal with her mercurial outbursts of anger, not to mention difficult personal hygiene issues. Our emotional exhaustion would be palpable and our emotions would probably make her anxious and upset.

Maybe it’s not really moments of clarity. Maybe those comments are just random, unexplained verbiage in a continuous loop of irrational conversation, a storm of unhinged words that Mom expresses when we’re with her.

If we cannot bring her home, we will have to celebrate all future birthdays and anniversaries, births and deaths without her out here in the “real” world, sadly realizing that we are mourning the absence of someone still alive. It matters to us, of course, knowing that her world is different now. Other dynamics govern her reality. She cannot be here with us; we must instead be there for her.

If we can meet her in the now, if we can find within the tangled circumstances of Mom’s existence the sweet woman whose smiles still light up her face, it doesn’t matter where we are or what surrounds us. For us, having Mom in a care facility means that we can sing of love and hold hands and enjoy each other’s presence. And we can leave the work of taking care of her physically to the competent staff that is employed to do so. This is a hard trade-off. But having her in a facility allows us to shower her with unfettered love.

It is hard to describe how utterly strange individuals who are suffering from Alzheimer’s can be, and how difficult it is to take care of them. And yet, despite all that, there are moments of pure joy, of laughter and light, and it is these that I strive for.

About the Author
Miriam Green is the author of The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver (Black Opal Books, 2019). She writes a weekly blog at www.thelostkitchen.org featuring anecdotes about her mother’s Alzheimer’s and related recipes. She recently presented a TEDx Talk about Alzheimer's at Shenkar College. Miriam works as the Counselor for AACI's Southern Branch, a position she was honored for last year in a national ceremony. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. You can find Miriam on Facebook and on Twitter. Miriam is a 28-year resident of Israel, and a mother of three.
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