Alzheimer's -- Living Day by Day, Moment to Moment

In my last post, I showed you pictures of my daughter’s visit last weekend. Those were the good points of the visit; snap shots of family members who drive for hours to visit Mom and me once a month with hopes that she’ll remember them just a little bit longer.

With Alzheimer’s Disease you never know from one moment to the next what your loved one remembers, or what they don’t. You can only hope that each day as a caregiver you’ve made them comfortable, given them the loving support they need to live with dignity, and pray that when they wake in the morning, they remember who you are. And when the day comes that they ask, “Who are you?” you pray for the strength to hold back the tears and answer.

Even as often as my daughters Angel and Stacey visit, my mom didn’t recognize my daughter Stacey this past weekend. Mom watched her as she talked, spoke to her as if she knew her, then, she asked, “Do you have kids?” Stacey smiled, and without hesitation said, “Yes, two. My daughter, Trinity, is seven, and my son, Quenton, is two.” My heart ached for my daughter because Mom didn’t know her; my daughter’s heart ached for her grandmother’s memory loss, rather than for herself.

I’m proud of both my daughters, for understanding the disease, for taking the time out of their busy schedules and making it a point to travel four hours to visit, and for being the loving daughters and granddaughters they are.

It’s sad watching my mom’s mind fade. I see a piece of her slip away each day. I miss my mom; the vibrant happy woman who was always so excited to see her grandchildren and great-grandchildren visit; the woman who talked to me, mother to daughter, for hours; the woman who gave me life and loved me unconditionally. Yes, my mom is still here, but the person she was is gone.

She moves slower and slower each day. I dress her in the morning; get her situated in her chair at the kitchen table, talk to her while I make her breakfast, and watch her expressions to tell me what kind of day she will have. If she has difficulty finding her mouth with the utensils, I know she’s having a bad day. Though she’s overweight for her size, she’s not lost weight with her diminished appetite. She struggles to get out of her chair and I come to her aid. She ain’t heavy, she’s my mother.

Mom’s always tired by 4:00 PM, but I’ve noticed in the last week that she seems more exhausted than usual. Less talkative and less aware of her surroundings. The intermittent memories are no longer coming back to her. Out of sight, out of mind.

Yesterday morning we were sitting in the living room and I noticed her frown as her eyes scanned the many pictures on her bookshelf. I didn’t need to ask if she knew the people in the photographs. The wrinkles in her forehead told me she wondered who they were. I stood up, walked to the pictures, pulled them off the shelf, and took them to her. I handed her a photo of my dad. She knew Dad. The next two photos were of her grandson, his wife, and two daughters. She had no idea who they were. The next picture was of my brother, her oldest son, and his wife. She said they looked like someone she knew, but she didn’t know who they were. The next picture was of my second brother, her son, and his wife, but she didn’t know them either. The next picture was a four-generation picture taken five years ago with her, my two daughters, my granddaughter and me. She knew herself.

I placed the pictures back on the shelf and prayed for strength in handling the next stage of Alzheimer’s disease.

When my mom didn’t recognize my daughter last weekend, I thought Mom slipped to a new stage in the disease. When she didn’t recall the visit after a reminding prompt, I knew.

We moved from the living room to the kitchen for an early lunch. She looked around as she sat and said, “Dad built those cabinets. I remember because you told me he did.” I answered, “Yes, he did. He was a wonderful carpenter.”

I turned to smile at her and saw her eyes filled with tears and her chin quiver as she struggled to speak. “Was? You mean he’s gone? Did he pass away? When?” As she sobbed, I knelt next to her chair to comfort her. I held her, wishing I could do more than apologize for not realizing she didn’t remember he was gone. “I thought he was at work,” she said, as I dried her tears. My dad passed away nine years ago. Last week she remembered that. Today, she didn’t.

My brother called and said he was coming to visit. When he walked in the door, I knew she didn’t recognize him. I asked her if she knew who he was. She said “no”.

That was yesterday. Today was not better.

I woke up Mom as I normally do every morning, placed her clothes on the bed, and walked her to the bathroom. Before we made it to the bathroom door she began to sob uncontrollably. I sat her in the kitchen chair and asked her what was wrong. Her words shocked me. “I’m dying,” she said. My mom never speaks of death and if the subject is ever brought up, she changes it. For her to say she’s dying was an utter shock to me. “Why do you say that, Mom?” I asked. Her answer was short, quick, and heartbreaking. “Because I am. I can feel it, and I’m scared.”

I did the only thing I knew to do, hug her. And I responded with the first thing that came to my mind, my dad.

“Mom, don’t be afraid. When it’s your time, you’ll be with Dad again, and that’s something to look forward to.”

“You’re right,” she said. “I never thought of it like that.”

She dried her tears and we continued with our day; getting her shower, getting her dressed, and getting her breakfast. The day continued on a similar note with her watching me in the same way she watched my daughter last week. She talked, constantly asking questions; she asked about her house, how long she’s lived there, where was my husband and why doesn’t he stay here with her and me, and she asked if I’d be okay when she died.

“I’ll be okay, Mom. Don’t worry about me.”

As the day progressed, she regressed, and by 4:00 PM she was once again exhausted. She wanted to go to bed earlier than usual, and after the rough weekend we’d had, I was inclined to agree, so we started our bedtime routine.

Every night for the past three years my mom has said the same words to me as I dress her for bed. “Thank you, honey, for staying with me and taking care of me. You’re a wonderful daughter and I love you.”

Tonight, she didn’t say those words.

Tonight, she asked, “Who are you?”

I bit my lip, held back the tears and said, “I’m your daughter.”

Her eyes brightened and she gasped, “You’re my daughter. That’s wonderful!”

“Do you know my name?” I asked.

“No, will you tell me?”

“Joanne. My name is Joanne, Mom.”

“That’s a beautiful name. Did I give it to you?”

“Yes, Mom. You did.”

I hugged Mom, kissed her, and tucked her into bed as usual.

“I love you, Mom.”

“I love you, too. You’d better get some sleep. You’re going to need it,” she said.

“Good night. I’ll see you in the morning.”

“I don’t think so. Get some sleep. You’re going to need it,” she said again.
I kissed her forehead and walked out of her room repeating, “I love you, Mom. Good night. I’ll see you in the morning.”

Since then, for the past six hours, I’ve been sitting in my room upstairs, in deep thought-- a sort of stunned, dazed frame of mind. Each day for three years I’ve never known what the next day might bring. We’ve lived day by day, moment to moment, not knowing what the next moment might be like, but I’ve cherished every moment I’ve had with her.

I don’t know what tomorrow might bring, but with her strange discussions this weekend, I do know I’ll be staying close to her side, rather than listening to her breathing come through a baby monitor in my room.

For her sake, when it is her time, I pray she passes peacefully in her sleep. And when she does, I know she’ll be in a better place and she’ll be okay.

I didn’t have the heart to tell her, I won’t.

Good night, Mom. I love you. I’ll see you in the morning.