Dec 152017
 

We are at a crossroads. Should we give Mom anti-psychotic medication to combat her hostility and irrational behavior (i.e., hallucinations, delusions, aggression, agitation), thereby knowingly accepting possible side effects of these drugs? Or should we continue to shepherd Mom through her heartbreaking performances and embrace her anger?

Mom is regressing into a world of incoherence and fantasy. She experiences what my dad calls psychotic episodes between periods of greater clarity with lack of cognition and total memory loss.

The use of anti-psychotic drugs must be considered with extreme caution. No drugs are specifically approved by the U.S. Food and Drug Administration to treat behavioral and psychiatric dementia symptoms in people with Alzheimer’s, though “off-label” use, where a doctor prescribes a drug for a different purpose than the one for which it is approved, is an accepted practice. How much is too much agitation? What defines a hallucination? Are there other alternatives? What are the risks involved? Is Mom a danger to herself or us? Who are the drugs really for—her or us?

We know from past experience that even a very low dose of one of the recommended drugs slows Mom’s gait, makes her sleepy and her speech more incoherent. But she is also more compliant and generally happy.

My dad is the one who spends all day every day with Mom. He has little time for himself, and he is often in conflict with Mom over her behavior. I had a renewed sense of his experience when he was out of the house for the whole day, and I was the key caregiver.

Several times during the day, Mom told me she had to leave. She walked to the back of the house and went from one room to the other. In Daddy’s studio, she went into the corner and dramatically pressed along the wall as if looking for a secret passageway. Back in the hall, she fumbled with the sliding door, trying to figure out how to open it. Then she went into the study, stood by the desk examining what was on it, opened the file drawer, and rummaged through it. I walked with her on several of her circuits, surprised at one point to find a folded manila folder under her skirt.

The first time it happened, it was only 8 a.m., too early to head to the local mall. I took the advice of our Filipina caregiver Sahli and let Mom struggle on her own. If we didn’t talk to her, she seemed less angry. But I was heartbroken to watch her actions knowing I could not help her or calm her in any way. When it was late enough to walk out, Mom hesitated. She told me she needed to stay where she was to find the way home. When I showed her the door at the other end of the apartment, she reluctantly followed me out.

We had a great time walking and talking, drinking coffee, window shopping, visiting rabbits in the pet shop and commenting on the people around us. On our walk home, Mom continued to radiate happiness. We stopped at my house and ended up making doughnuts for Chanukah. We listened to Benny Goodman, sat in the sunshine, swung our legs on the bed and laughed about everything. Mom cooed over the cat. Then she lovingly pet my stuffed moose, asking me at one point if it had trouble breathing.

At about noon, we went back to Mom’s house.

“This isn’t my house,” she said when we went inside.

And so began Mom’s second round of “going home.” She refused to eat lunch. She refused to take her nap. We checked up on her occasionally, but our idea was that she’d eventually tire and want to sleep.

At 1:00, I asked if she’d like to come back to my house to bake the doughnuts (they had to rise for an hour). Nope. Mom expressed an urgency to stay where she was. I left her with Sahli and popped home.

I was back by 1:30. I took Mom into her bedroom thinking I could convince her to nap by lying down with her. Ha ha. Mom examined everything in the room. She sat at the edge of the bed and made her skirt into a kind of pocket so that she could put things she’d gathered in it. Of course, the minute she stood up they all fell out. So she took off her skirt. She found a sweater and put it on over her other two layers. She took it off, put her skirt back on, then put on one of Daddy’s sweaters. She placed things under her pillow, including her purse, some tissues, a file from the computer room and Daddy’s sweatpants. All the while she kept up a running commentary on everything that she was doing. Most of it involved saying goodbye to me and kissing the top of my head because she was apparently heading off into the wild unknown.

Two hours later, we left her room. Sahli finally got her to sit down, and then miraculously, her mood changed. She ate lunch, had a cup of tea, talked and giggled, and somehow seemed to gain a modicum of normality. By then, thankfully, it was time to pick Daddy up at the train station.

What a greeting Daddy received. Here was Mom’s sun returned to her.

“I bet you’re glad I’m home,” he quipped.

And I was.

As to the drugs, it is not my decision to make. But I guess you know how I feel. I don’t want to lose any part of Mom that can interact with us with joy and laughter. I realize that this opinion may come at a steep price.

Chanukah, oh Chanukah. Doughnuts are the least interesting part of Chanukah historically, but they are synonymous with the modern-day holiday. The trick is to eat doughnuts without gaining a million pounds. Here’s a sensible recipe that I made especially for my dad.

Saba No-Fry Doughnuts

I made these doughnuts specifically for my dad—no milk, no fried dough. He deserves a special treat. They came out reasonably well; they give the illusion of eating a doughnut. The less you knead the dough, the spongier the doughnuts turn out.

2 teaspoons yeast
½ cup sugar
¾ cup warm soy milk
4 eggs
½ cup oil
3¾ cups flour
1 teaspoon salt
1 teaspoon vanilla

Icing:

1½ cups powdered sugar
2-3 tablespoons soy milk
1½ teaspoons vanilla
For chocolate icing, add 2½ tablespoons baking cocoa

Directions:

Proof yeast in a small bowl by adding yeast, sugar and warm soy milk. Let react for 15 minutes. Add eggs and vanilla. Sift in flour and salt. Knead till dough forms. Let rise for two hours in a warm area. Refrigerate dough overnight, or up to two days.

Remove from fridge and shape as follows: Without kneading the dough, make fist-sized balls and place on a baking tray covered in baking paper. Use a small, round cookie cutter or other item to make the doughnut holes. When all the doughnuts are made, cover with a towel and let rise for up to an hour in a warm area. Brush tops with egg and bake at 375° for 15 minutes. Meanwhile, in a separate bowl, mix icing ingredients. Dip warm doughnuts in icing then let cool. Microwave for 15 seconds just before eating.

About the Author: Miriam Green writes a weekly blog at http://www.thelostkichen.org, featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her poetry has appeared in several journals, including Poet Lore, the Prose Poem Project, Ilanot Review, The Barefoot Review and Poetica MagazineHer poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. She holds an M.A. in Creative Writing from Bar Ilan University and a B.A. from Oberlin CollegeMiriam is a 20+-year resident of Israel and a mother of three. Her parents recently moved down the street from her.

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Dec 092015
 

“I don’t know if I’m lost or not,” Mom said as walked in the city. We were holding hands, the sun gracing us with warmth, the sheltering sky bright and blue.

I keep wondering what it’s like to feel that everything around you lacks substance, that what you knew a minute ago is now no longer familiar. What happens when your depth perception goes, and the general hubbub of the city becomes not just loud, but physically overwhelming? Or when you’re constantly feeling like something is missing—your bag, a shoe, your young child—but you don’t remember what it was or how to explain it.miriamblog

The other day as I was driving aound town, I suddenly realized I didn’t know where I was going. I could not remember how to navigate from point A to point B. The information I relied on was missing; it felt utterly blank inside my head.

Compared to some, Mom is doing great. She can still function in the world, to a lesser extent. We had a strange conversation at lunch where she asked me if my mother sang to me as a child. Who was I in her eyes, I wondered? Not her daughter. Not her sister. Who could I have been?

Sometimes it is enough to know that she enjoys my company. As I enjoy hers. As I leave my house each Tuesday and set out on my journey, I start narrowing my day’s focus. I put aside other thoughts, other chores, other aspects of me. I pack away my ego. I steel myself to the mystery, delight, and heartache of being with my child mother.

As we light the fourth candle of Chanukah tonight, let the light that shines so brightly from our individual flames light the darkness that is Alzheimer’s. Let us bring our precious loved ones into the light with us and treat them as kindly as we can.

I couldn’t let Chanukah pass by without making doughnuts. I love those ubiquitous fried dough balls. But who needs 600 calories every time you eat one! It’s not really about need, I know, but there are alternatives if you want to indulge without the shemen, oil, making you shamen, fat.

No-fry Doughnuts

These doughnuts are nearly as good as the real thing—sweet and light, and a whole lot fewer calories. Makes 12-16 bite-size doughnuts.

1 cup soy milk
¼ cup oil
¼ cup date honey
½ Tbsp yeast
1 tsp salt
2-3 cups flour

Coffee Glaze:

1 cup powdered sugar
2 Tbsp prepared coffee

Chocolate Glaze:

½ cup chocolate chips
½ tsp vanilla
½ tsp water

Directions:

Heat soy milk, oil and honey in a small saucepan. Bring to a boil then let cool. In a large bowl, mix flour, yeast and salt, and form a small hollow in the flour. Pour warm milk mixture into bowl with flour and mix. Kneed, adding flour if needed, until dough is springy to the touch but not sticky. Form dough into small round balls and place on baking sheet, making sure to leave room for them to rise. Let rise in warm room for up to 1 hour. Bake at 350° for 10 minutes. For toppings: Coffee—Mix 2 Tbsp prepared coffee with 1 cup powdered sugar. Stir to remove lumps. Chocolate—Combine ingredients in a microwave-safe bowl and cook on high for 40 seconds. Stir to melt all the chips. Dip rounded top of doughnuts into one or both mixtures, then let sit so glaze will harden.

About the Author: Miriam Green writes a weekly blog at thelostkichen.org that chronicles through prose, poetry and recipes her mother’s battle with Alzheimer’s.  Her unpublished cookbook, “The Lost Kitchen: An Alzheimer’s Memoir and Cookbook” is filled with advice for the novice cook, easy and elegant recipes and home-spun caregiver advice. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. Miriam is a 20-year resident of Beer Sheva, Israel, and a mother of three. You can visit her Facebook page here.

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