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You Can’t Go Home Again: The Story of a Daughter and Caregiver

You Can’t Go Home Again: The Story of a Daughter and Caregiver
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December 12, 2019
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I recently spent the day in my mom’s former community reading from my book, “The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver,” and talking to my mom’s friends. One woman showed me the bracelet Mom had given her for her birthday 15 years ago, still being worn as a reminder of their close friendship. Another proudly told me that she was the first one to invite my parents to dinner when they arrived in town. These friends spoke of her beautiful smiles, her enthusiastic greetings, her melodious voice. They clearly loved her.

Perhaps I would have felt more contentment if this had been a memorial service. Perhaps if Mom were not in her current suspended state I could have mourned losing her previous self with a sense of finality. Nevertheless, I valued hearing others describe the generous, kind woman Mom once was. It buoyed me for days—the love she elicited, the love she gave.

Mom is still very much alive. She resides in a care facility only a 20-minute walk away from my house. One of her friends asked if we were able to sign Mom out of her care facility, and if so, did we ever take her home.

The sad and simple answer: No. No, we have never signed her out of the facility. It would be unreasonable and unnecessarily painful to take her home. There is no possibility of turning back the clock.

Where Is Home?
What is Mom’s perceived sense of home? What would we gain by bringing Mom home? What, if anything, would she gain? Would she be happy or despondent, angry or frustrated? On and on the questions tumble out as 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 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?

Now that she’s less physically capable, I wondered how she would get into and out of a car, how she’d navigate the house, and what she would do there. Would she accept our assistance and follow our instructions? Would we be able to physically handle her in the bathroom? Would she eat the food we gave her?

I recently read an article about another daughter struggling with her mom’s Alzheimer’s, who, five weeks after putting her mom in a care facility, decided to reverse the decision and bring her back home. How guilty that article made me feel, how defeated and devastated. I cried tears of anguish as I thought about my mom not living within the bosom of her family.

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 deal with her mercurial outbursts of anger, a storm of unhinged words in a continuous loop, not to mention difficult personal hygiene issues. Our emotional exhaustion would be palpable and would probably make her anxious and upset. We cannot bring her home because the concept of “home” is certainly already lost to her.

With Love and Consideration
Each family must make its own decisions about where and how to care for their loved ones. As each individual is affected differently by Alzheimer’s, so is the care he or she receives from those around her. We must strive to live guilt-free when it comes to being caregivers. There is no right or wrong decision that we make for our loved ones, just decisions, usually born of tremendous needs and stress.

None of this matters to Mom. We will have to celebrate birthdays and anniversaries, births and deaths without her out here in the “real” world, realizing that we are mourning the absence of someone still alive. It matters to us, of course, knowing that her world is different now. She cannot be here with us; we must instead be there for her.

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. 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 battling their Alzheimer’s disease can be, and how difficult it is to take care of them. And yet, despite all that, there are moments of pure joy, laughter and light, and it is these that I strive for.

This year, I made a non-chocolate dessert for my birthday; I surprised even myself! I gathered the alarming number of uneaten cherries that we had in the fridge, pitted them and made a scrumptious pie. I’m guessing it’s a lot easier if you bring home a can of cherry pie filling. That is to say, we all have different ways of making the same dish. No one way is more right than another.


Cherry Pie
Yes, this is worth the effort of pitting all the cherries. This pie was just the right amount of sweetness.

Filling:
3/4 cup sugar
1/3 cup cornstarch
1 cup apple juice (or 3/4 cup apple and 3/4 cup pomegranate juice)
2 cups fresh pitted cherries
1/2 teaspoon cinnamon
1/2 teaspoon nutmeg
1/4 teaspoon vanilla

Pastry:
2 cups flour
1/2 teaspoon salt
2/3 cup softened margarine
5-7 tablespoons iced water
 
Directions:
Set oven to 425° F / 200° C. Pit cherries, slice and set aside. Dissolve cornstarch in juice. In a medium saucepan, combine sugar, dissolved cornstarch and juice. Stir constantly until thickened and remove from heat. Fold in cherries and spices. Meanwhile, in a large bowl, combine flour and salt. Slowly add softened margarine and, using a fork, mix until a crumble forms. Gradually add water until dough takes shape. Divide into two unequal parts, approximately ¾ and ¼. Use a 9” / 20 cm pie pan. Roll out the larger dough ball on a floured surface until it is large enough to cover the entire pie pan. Pat the dough into the pan, leaving any edges until later. Pour cherry filling into the pan. Roll out the second ball of dough and cut into 1” / 2.5 cm strips. Using an over-under pattern, lay the strips across the filling, forming a “lattice” crust. Try to connect the strip edges to the bottom crust, then tidy the top by cutting off any excess crust. Bake at 425° F / 200° C for 10 minutes. Reduce heat and bake at 375° F / 190° C for 40 minutes or until crust is golden brown. Filling may spill over the sides, so place a piece of aluminum foil under the pan.
 
About: 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. She holds an M.A. 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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