Create an ‘Aprons4Alzheimers’ Movement in Your Community
1. Gather friends and sew aprons.
2. Sell the aprons at a farmer’s market, bazaar, or through a local merchant.
3. Donate proceeds to a local organization that provides Alzheimer’s respite care.

Thursday, April 7, 2011


Back To The Beginning

          In April of 2007, my husband and I decided to sell our century old home in Salt Lake City. It required constant maintenance; we felt as if the house and yard owned us. We dreamed of a different life: one with less real estate responsibility. Our goal to live on the road in a 16-foot travel trailer became a reality when the house sold in August. Without a mortgage and a lifetime of accumulations, we simplified our life. A few tools, four handmade quilts and a sailboat stayed behind in storage. We pointed our compass west and said, “Let’s go live a life.” For three months, we climbed peaks in the Rockies, shivered under towering Redwoods, tickled our toes in the Pacific, and fell asleep listening to coyotes howl in the desert.

          Then the call came with news concerning my dad’s declining health. He was not treating his high blood pressure; he suffered from extensive edema, required a cane to walk, and had shortness of breath. We left the truck and trailer in Las Vegas and flew to Florida, thinking we could assist with Dad’s health care: give him a pill or two, help with some daily chores, and maybe have time to watch the sunrise over the Atlantic. Oh, how simple it sounded.

          We didn’t do so well. Within a month, Dad was hospitalized with congestive heart failure. After a flurry of tests and doctor’s consultations, we learned he had renal disease brought on by hypertension. The doctors mentioned kidney dialysis, which sounded like a freight train bounding down the tracks in our direction. Dad’s hospitalization put Mom’s long-standing dementia into a tailspin. Before we fully understood Dad’s diagnosis and treatment options our suspicion that Mom suffered from Alzheimer’s was finally confirmed. It was as if a giant foot came down and stepped on the break pedal, and our short, sweet life on the road came to a screeching halt. We were living life differently, that’s for sure. Just not the way we intended.

          I left home at 17 to attend college. At age 20, I left Michigan and headed west to settle in Colorado. I was geographically and, quite honestly, emotionally severed from my family for 35 years. Suddenly I had parents again, very needy parents. My sister and I rarely connected over the years, but now we found ourselves in the same ball court as tag-team caregivers.

          My husband Lon and I took the winter duty in Zephyrhills, Florida. During the summer months, Katie and her husband Del continued to look after them on their farm near Applegate, Michigan. Our parents, Donna and Gerald, could only give minimal aid to each other; in their stead, Sis and I became a replacement wife and husband for each of them. The shoes we decided to step into were large and clumsy. Kicking them off was not an option for us; we learned how to find comfort in the uncomfortable.

          The following chapters are from a journal I kept during the winter of 2009-2010. Each chapter is part journal and part reflection on who my mom was, how Alzheimer’s changed her, and how I learned to be a caregiver.

Chapter Titles

Chapter Order

Back to the Beginning
1. Getting the Death Bed Ready
2. “All the way Back to my Fanny?"
3. Napkins and Paper Clips
4. Mom’s Green Thumb
5. The First Days of the Last Five Months
6. Tortured Omelet
7. In the Land of Hit and Miss Memory
8. “Cookies? We have Cookies!”
9. I Would Rather Burst Into Flames
10. Help Is Spelled H-E-R-B
11. When Life Hands You Alzheimer’s, Make Aprons!
12. Are You Looking For Sympathy?
13. Big Girl Panties
14. How Did You Find Me Back At That Place?
15. Hey! I’m Still Me In Here
16. Grandma Fed Us Roadkill
17. Music in my Toes
18. You Were the Bravest
19. Mom’s Seventy-Fifth Birthday
20. Where’s Gerald?
21. Alzheimer’s Last Gift
Looking Back
Farm Stories
22. Bean Summer Mornings
23. Riding Ollie
24. Killdeer

Chapter 8

“Cookies? We Have Cookies!”

          Trying to keep Mom busy and occupied is a great challenge. She’s never been interested in watching television but she will sit and watch a movie with me if I can find something without profanity. This strikes me as highly ironic, since she can be the queen of profanity even on her best days. We watch Cinderella or Ann of Green Gables, Cinderella or Ann of Green Gables, Cinderella or… I have both movies memorized. Even with her hearing aids, she can’t hear very well, so we use subtitles: “Put those words at the bottom of the T.V. for me,” she instructs, “they make me believe what I heard is what I heard.”

          She loves a bird book I have; each page has a picture and several paragraphs of information about the bird, along with a button you push to hear the bird sing. She is pleased as punch when we sit together for a session of reading and listening. She responds like a child at the various birds. “Mad,” she says when we hear a Canada goose. “Sweet soft,” she responds at the call of a Black-Capped Chickadee. “Noisy!” she remarks at the sound of the raven. This past summer, Katie noticed Mom using these one-word responses, like a child first learning to talk. It was a clue she had experienced what our family calls another “nose dive.” My mother has become my little girl.

          Last winter she was my sassy, angry teenager. Her outbursts frustrated me to tears almost every day just as I’m sure my teen years did the same for her. Alzheimer’s makes us play a hellish game of “Tit for Tat.”

          Katie and Del had to rescue us last winter when Mom sapped our energy and emotional strength. We haven’t needed a rescue party this winter. Mom’s teen years are over, now she's a toddler. Through careful consultation with Mom’s doctor, we have finally found a combination of prescriptions that ease her anxiety without turning her into a zombie. We take her to her favorite restaurants and for slow walks around the mobile home court. We do anything to keep her content. I admit I’m getting tired of the bird book activity. “Read birds,” she asks one day. I can’t help but groan and then remember my favorite childhood book. She must have read The Little Engine That Could hundreds of times to me. I owe her for all she did for me but I need a new activity. “Mom, let’s make cookies.” “Cookies!” she responds, just like a three year old.

          She toddles behind me like a lost puppy, but as soon as we get in the kitchen, a part of her brain kicks in and she questions me in a monotone yet “Mother knows best” voice, “Is the butter at room temperature?”
          I take a deep breath, “Yup, the butter is at room temperature.”
          I really do try to answer patiently; I should have angel wings the size of elephant ears for my efforts. After asking how to unwrap the butter, she looks at me with the cloud of Alzheimer's suddenly gone from her eyes, “Did you remember to preheat the oven?” For a second I think she's back and the last few years have been a big nightmare. But no, her next question is, “What are we making?”

          What is it like to have a brain that remembers the old but not the new? How do you keep the pieces of your life connected?

          Here's the rub, Mom was a baker. Not only in our farm kitchen did she whip up her magic, but also in the bakery at the local IGA in Sandusky, Michigan. I often stopped by for short chats with her on the way home from my shift as a nurse’s aide at McKenzie Memorial Hospital. It was entertaining to watch her make piecrusts. She worked like a machine and loved every minute of the tedious, repetitive details:

Tear off a handful of dough from the huge mound.
Toss it on the scale.
Pinch off a piece...or
add a smidgen.
Expertly roll the dough in a perfect circle.

          Holding the dough as if bathing a newborn baby, she would fold the circle of dough in half, gently place it in the pie tin and unfold it as if it were a rose petal. She quickly patted the dough into the pie tin, deftly crimped the edges with her fingers and thumbs, placed the finished crust off to the side and grabbed a fistful of dough to repeat the whole process.

          It was mesmerizing to watch, hypnotic even. I’m sure she herself would get lost in the act. It's hard to believe, but it's true: She could make 60 piecrusts in an hour. Yes, sixty. One a minute. Now she can't remember for 30 seconds that we are making cookies.

          Today she expertly whacked two eggs together, neatly opened them, and knew how to turn on her old Hobart industrial mixer. She can't tell you her zip code, she doesn't know her phone number, and she struggles to give the hospice nurse her full name. However, she can remember how to get the large beater off the mixer. When I struggle with it, she impatiently shoves me to the side, “Here, let me do it,” and without hesitation removes the beater.

          It's just a laugh a minute, this Alzheimer's.

         Mom has always been at home with a 50-pound sack of flour. We would walk home from school and the smell of yeast met us at the driveway. Bread was her specialty. Potato bread, she called it. She boiled potatoes, saved the water, mashed the potatoes and added both water and potatoes to the yeast and flour. She would put the dough in the car and drive around to visit Lee or Juanita, her favorite “coffee klatch” friends. The dough would rise in the car as the coffee perked and the conversations got lively. In between stories and coffee, she would punch down the dough, let it rise again, visit some more, then drive home to roll it out and braid the bread in beautiful long loafs.

         Today she can’t comb her own hair.

          I always loved how the car smelled like yeast. Once I had my license, I always knew to look in the back seat before taking off with the car. There could be a large bowl of plump dough working itself into a puff, even if Mom didn't go visit'n, the car was always her favorite place to raise dough. To this day, warm bread slathered with butter is my ultimate comfort food. 

          So, here we are in the kitchen together, years later, and she needs help dropping the cookies by the spoonful onto cookie sheets. The same cookie sheets we used back in the 60’s when we churned out cookies as if we were Keebler Elves. Under Mom’s direction, Sis and I made pounds of cookies and sent them to soldiers in Vietnam along with letters of cheer.

          Mom asks for the scoop she once had, a scoop that made perfectly round cookies. She looks for it in the drawer but it’s been long gone from her kitchen supplies. When the cookies come out of the oven, she asks like a child if she can have one. She sits at the table crunching away. Five minutes later, she can't remember that she ate a cookie, but she's still looking for the cookie scoop she had 30 years ago. “I’ll look for it, Mom, you go have another cookie.”

          “Cookie?” she asks, “We have cookies?”

          If I get this disease I hope someone will read, The Little Engine That Could, make cookies with me, and hold my hand as they lead me on slow walks. Whoever that person is, I promise to help them grow a pair of angel wings.