Narrative Documentary

My mother, a 64 year-old woman living with early-onset Alzheimer's disease has been exhibiting symptoms of the disease for several years. She has difficulty making decisions and completing tasks for daily activities and personal care. In this deeply personal narrative, I show aspects of how Alzheimer's disease has impacted her everyday life.


The most difficult part for me to watch is when she is attempting to fix her hair. Perhaps it is the very close camera angle. Perhaps personal hygiene is a more intimate subject. Perhaps above all, this is my mother, a once vibrant, gorgeously confident woman who would dress impeccably with beautiful curls kissing her head.

It is all of this.

Dogfood, curlers and dinner plates. Produced by Liz Spencer.

Music by Young Collective, used in cooperation with the terms of use by NoiseTrade.

Enduring

They met when they were in college working part-time as waitresses in a downtown restaurant. My mom and her friend got an apartment together. It was the late 1960s. Little did they know, they were forging a friendship that would endure the test of time and distance.

Dressed in their waitress uniforms, my mother (right) and her dear friend (left) pause with a coworker for a photo outside the restaurant they worked at in downtown Carthage, Mo. in the late 1960s.

Before marriage, children, divorce and long before Alzheimer's disease, my mother was once a young single girl. Just as it's difficult to envision her disease progressing farther, it is also difficult to imagine my mom as a young single college girl. Her dear friend assures me that this indeed was once the case. In 45 years, they have shared joy, adventure, heartache, death of parents, births of children and grandchildren and difficult health diagnoses.

Inside their apartment in Carthage, Mo., my mom (right) and her roommate and best friend (left) pose for a photograph in the late 1960s.

It was my mom's dear friend who opened our eyes to the start of this disease. She invited my brother and I to her home in 2008 for what was likely one of the most difficult dinner parties she has ever hosted. She shared with us that she was concerned for mom, that she saw things changing in her and that she was slipping away from the woman she once was. She shared some family history of dementia that we were not aware of before and encouraged us to seek help for mom. This began the journey to that infamous moment in the neurologist's office when we heard the diagnosis five years later.

Her friend has now moved to another state and is no longer able to travel due to her own health issues. We considered taking my mom to visit her; but after much contemplation and prayer, we saw that it would be very difficult to travel with her by airplane. Her friend calls once a week and patiently listens as mom shares the same stories over and over. Mom clearly remembers her, and as her life and circle of friends has grown smaller and smaller, this friend of hers is very dear to all of us.

It was fall 2013. We were still carefully weighing the possibility of taking mom on a flight to visit her friend. It was starting to become clear that this trip was unlikely to happen. Our hearts were heavy. At that point, it had been two years since they had last seen each other. And then the revelation washed over us like a wave crashing against the shore. As a communication major and one who is passionate about visual communication, I was honored to be able to facilitate a way for them to see and talk to each other.

From her home in Diamond, Mo., my mom (upper right) and her lifelong friend (center) have their first FaceTime call in October, 2013.

One year ago, just like two girls in college, my mom and her friend had their first FaceTime call. Just like their undying friendship, one of the enduring conversation topics was---hairstyles! They remarked at how each other's hair looked.

Enduring friendship--oh that we all might be blessed to experience this in life.

My mom (left) and her dear friend pause for a photograph in front of a piano in a southwest Missouri home, circa late 1960s.

Unraveling

I keep fighting the urge to write in third person. To distance myself from this reality.

My husband and I have noticed that my mother is withdrawing more than usual. She had a head cold a few weeks ago and that seemed to set her back mentally. I found her one day with her journal in hand, walking over to the wall calendar, staring at it. She asked me what day it was. Then she would check what she had written in her journal and look at the calendar again and ask me again. This repeated several times. I noticed while she was writing in her journal, she had a second book with her. It appeared she was checking things in one book and then looking at the other as if the "right answer" was somewhere to be found in one of them.

She was almost frantic at moments. Fixated on the task she had created for herself, she would not stop to eat lunch. As I grew concerned, I finally asked, "What are you doing, Mom?" She said she has a second journal that she keeps in her bedroom that she sometimes forgets to write in. I realized she was trying to copy from one book to the other. I quietly looked at the dates--she was trying to copy word for word three months of entries. A second journal... that does not make sense. In fact, her journal entries themselves are nonsensical.

June 8 Wednesday. Made coffee. Banana bread for breakfast. Liz left for college. Went to mailbox. Let the dog out to potty. Went to bed.

The next entry might be something like:

June 10 Thursday. Coffee, banana bread. Liz left. Dinner. Dog went potty. Went to bed.

The dates are not correct, nor are the days, nor are even the details. Who records that their dog went outside? And why does one need a second copy of a journal like this?

Sitting in her favorite chair in the living room, my mother attempts to copy entries from one journal to another. She worked at this self-created task for 10-12 hours Saturday, Oct. 4, 2014.

Her world is unraveling. She is frantically trying to hold onto it. That day I found her copying her journal, she sat in her chair doing this for 10-12 hours. She was mentally and emotionally exhausted when she finally went to bed. Since that day she has been quieter than usual. She has not wanted to visit her friends for two weeks--something that she previously insisted on doing. She is not eating as well. I see her world getting smaller.

I discovered this song written by another Liz. Her grandmother died of Alzheimer's disease. My mother is not in the late stages like Liz's grandmother... not yet. I cannot envision the day when I can sing all of these lyrics. But some of them ring true today.

Time and tide wait for no man

"Time and tide wait for no man," Geoffrey Chaucer.

Saturday my mother asked me three times what day it was.

She is often confused about what day of the week and what month it is. We noticed this summer in the sweltering heat that she was asking if it was very cold outside. From my perspective, I see the ebb and flow of how she perceives time. It drifts in her mind like waves rushing in, then drawing back and rushing in and drawing back.

Staring at the wall calendar hanging on the refrigerator, she holds a small pocket calendar, trying to match up the dates. Six months ago when she could no longer tell me what she had for lunch, she started keeping a journal. I think it was out of spite at first--so she could prove to me that she was capable of completing everyday activities. Then I think it evolved into her attempting to prove that to herself. Soon after she started, time began to slip.

Changing medical appointments causes confusion for my mother. She attempts to keep multiple calendars. Photo taken Saturday, Sept. 13, 2014 inside her home in Diamond, Mo.

She often asks what day it is so that she can write the date in her journal. She loses track of the sequence and also forgets to write in her journal some days.

Today we made sure she knew what day it was. Today my mother turned 64 years old. When she saw the silly card with flowers that my six-year-old picked out, she cried tears of joy. Or were they sorrow? My heart broke a little more. Happy Birthday, Mom.

One of my favorite photos of my mother was taken inside a photo booth in Northpark Mall in Joplin, Mo., circa 1992. She looks so beautiful here, so full of joy.

My mother and I at a private family event inside Mother Road, a coffee shop in downtown Carthage, Mo., on Friday, Oct. 25, 2013. When viewing these two points in time simultaneously, it is especially difficult to see her declining physical state and functioning ability. She looked beautiful that evening.