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.

Thanksgiving Meal

We had our family Thanksgiving meal last week. We set up the food allowing everyone to walk through and make a plate. My mother went first. I captured her experience of selecting the food she wanted.

She struggles to decide what items she wants on her plate and tries to balance holding her plate while dishing the food onto it. Her facial expression becomes distorted as she attempts to dish the potatoes onto her plate. It is difficult for me to see a once vibrant food lover fading into what I see today.




Getting her to eat has become a struggle. She will often say she is not hungry. She has lost so much weight, we have all become very concerned. However, we have made great strides in getting her to eat more. One year ago she weighed almost 10 pounds less than she does today.

I have observed her forgetting the names of food items:

pepper, banana, cinnamon toast ...

I wonder if she is also struggling to comprehend what food is when we refer to it by name only. Last night I asked her if she wanted meatloaf or Manwich (Sloppy Joes) for dinner. She had a puzzled look on her face when I said Manwich. She asked me to repeat it a few times and never seemed to recognize what I was referring to--although she has had this meal several times in the last few years. She eventually answered, "Meatloaf." When she saw the other plates in the kitchen, she asked what it was we were eating.

Is this strictly language loss or word comprehension declining? Or a general disinterest in food itself? There is an element of it that is an emotional connection. If she is upset about something or in an episode of paranoid behavior, she will refuse to eat as if that is a punishment to the rest of us. Rather I think it is her grasping onto this as a means of control.

There are often times when she is focused on other activities and if she does not finish sorting the dogfood for example, it's as if she cannot possibly stop to eat until she completes the self-created task before her. During the day, when we are gone for work and school, I believe she forgets to eat. Sometimes midday I will ask her, "Mom, are you hungry for lunch?" She will reply, "I just ate my breakfast." Yet I know that was several hours ago.

The good that I can cling onto from this holiday--as difficult as some things are to watch, I know that next year she could be much farther progressed into the disease. In five years, we may not be able to sit and have some of the conversations that we did with her this Thanksgiving.

She forgot my son's name on Thanksgiving... One day she might not know who any of us are. I am thankful for the good moments that we could share together as a family.

An Illustration of Dementia

In one of my graduate program courses, I had a visual editorial illustration assignment. Bombarded with dementia issues on a daily basis, I hardly have time to think about other social and human issues. I created the following illustration of how I would describe the disease.

An Illustration of Dementia by Liz Spencer

Dementia is a collection of symptoms including memory loss, personality change, and impaired intellectual functions. Common signs and symptoms of dementia include:

• Memory loss
• Impaired judgment
• Difficulties with abstract thinking
• Faulty reasoning
• Inappropriate behavior
• Loss of communication skills
• Disorientation to time and place
• Gait, motor, and balance problems
• Neglect of personal care and safety
• Hallucinations, paranoia, agitation.

To create the image I combined recent photographs of my mother, childhood photos of her, images of a newspaper article when she was working in the 1980s, and graphics that helped tell the story of how I visually describe the disease. I also incorporated glimpses of images that held a similar emotional connection: an photograph of the May 22, 2011 Joplin, Mo. tornado destruction and a photo of human skulls in the Catacombs in Paris, France.

I found myself this week screaming, "This disease is disgusting. I hate it. I hate this horrible disease!"

The process of creating the image took several days. The closer I got to completion, the more unsettled and anxious I became--realizing the hatred I have for the disease was coming to life.

Reading the description of common signs and symptoms, I am literally nauseous. My mother exhibits every one of those signs, except for hallucinations--at least not to our knowledge.

Telling a visual story of Alzheimer's disease has been an emotional, personal process. Looking at the image that was created, an emotional reaction stirs inside of me.

Agitation, Disorientation, Memory Loss, Paranoia, Impaired Judgement, Imbalance, Inappropriate Behavior, Neglect, Destruction, Death...

Disgusting, horrible disease.

Lunch Lady

She was the lunch lady. My mother was the food service director for the school district when I was in elementary school. She studied food service and hotel/restaurant management in college, but never finished that degree. She had plans to open a catering business. The pots and pans now sit in a shed, rusting as the years layer dust upon dust. She left that position at the school to work in sales and bounced from job to job for years trying to raise my brother and I as a single mother.

My son, her grandson, now attends the same school that I once did. He sits in the same classrooms and eats in the same lunchroom. Last month, I took my mother to eat lunch with him at school. While it has been several years since she has been in the building and the lunchroom, not much has changed. Mom did not appear to recognize the setting. She sat beside my son and struggled to focus on the task of eating her lunch. She seemed confused by what utensil to use for each food. Her half banana was impossible to open, she handed it to me. The diced pears were a challenge--should she use a fork or a spoon? She would take a bite of one food and hover her fork over the next, bouncing back and forth with uncertainty.

My son, left, eats his lunch with his grandmother in the same lunchroom that I ate in as a child, Thursday, Oct. 16, 2014, in Diamond, Mo.

Two little girls behind us noticed that she had missed a belt loop on her pants when threading her belt. She often does. The girls whispered to each other. I felt a harsh stab as they leaned in close together and giggled. My son thankfully did not notice them talking. Although I often feel frustrated with the difficulties of this situation, I feel a protective sense when it comes to my mother. Perhaps this is natural-the urge to protect.

My mother struggles to eat her food as, unbeknownst to her, two girls (left) sitting behind her notice she has missed a belt loop in her pants. The man walking in the far right of the screen approached mom and asked, "Do you remember me?" My mother soon started to appear overwhelmed.

Noisy scenes bother my mother, I am often attempting to keep over-stimulating noises, settings and visuals away from her. The lunchroom was loud that day with a lot of activity and background noise. There was also a staff member that approached her and said, “Do you remember me?” Of course he is unaware of her diagnosis, however his words felt cruel. She said she did and he asked how she was doing. As he walked away, I asked her who he was. She replied, “I have don't have any idea. He knew me, but I don’t have any idea who he is.” Every few minutes, in between bites of food, she would look around the room searching for him. I could see the worry in her eyes. Soon the color drained from her face and a sickening look washed over her. I asked her if she was feeling okay. She said she was not and that she couldn’t eat any more. I told her she did not have to and then she laid her head down at the lunch table. I quickly took her tray and as soon as I said we could leave, she was fine.

Possibly overwhelmed by the loud sounds and activity of the lunchroom, or perhaps worried about not remembering someone who knew her, or even frustrated with the task of eating; my mother started to appear ill and panicky. She laid her head down on the lunch table in a childlike way that shocked and worried me. As soon as I said we could leave, she popped up and acted fine.

Yesterday, we left her at home alone for a few hours. When we returned, we saw lettuce sitting in the sink. We asked her where it came from. “The neighbor brought it over for us,” she said. She left the room and returned not more than four minutes later. She saw the sink and gasped, “Who put this lettuce here?! Why are you leaving this lettuce in the sink?” A sickening feeling washed over me as my husband said, “You just told us the neighbor brought it over. You put the lettuce there.”

Lettuce appeared in the sink when we returned from a short errand trip, Saturday, Nov. 1, 2014. We asked mom where it came from. She replied, "... the neighbor ..." Minutes later she saw the lettuce in the sink and exclaimed, "Why are you leaving this lettuce in the sink?!"

Once a director of a food service program for a thousand people every day, she is no longer able to follow a recipe. She often forgets to eat or is agitated and distracted during meals. Today my son noticed she had not eaten some food in the refrigerator. He asked, "Why didn't grandma eat her food?" I replied, "She cannot remember to eat sometimes, sweetheart." A look of surprise settled on his face, "That's so sad," he said.

Yes it is son, yes it is.

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.

Dog Food

When did the disease start? That’s one question we are asking ourselves repeatedly. It’s a question that has no real answer and ultimately it has no point. It would be like asking, “Why?”

As I started to hear about my mother’s unusual reactions in situations, I would hear stories of her upsetting friends, family and strangers alike. She would make unreasonable requests, overreact and snap. This pushed many people in her life away.

She has always loved dogs. She has had a dog her entire adult life. As relationships were severed and people drifted out of her life, her bond with her dog deepened. It is not only a bond of affection and companionship, but also I believe a sense of control. She has something to take care of, something that gives her life meaning and purpose.

I realized a year ago that she was cutting her dog’s food into tiny pieces. She used to stab the pieces with a knife, often cutting her fingers and hands, damaging the countertops. I was shocked and would insist on telling her she couldn’t do that—that she was hurting herself, that it was ridiculous to do this.

I bought smaller dog food. She still sneaks into the kitchen and cuts or breaks up the dog food when I’m not watching. She has also started picking out specific pieces for her dog to eat. She will bend over for hours at a time and sift through the 16-pound bag of dog food searching for specific pieces. She sorts the varieties into piles and throws the undesired ones back—all while her dog waits hungrily at her feet.

My mother sorting dog food pieces into piles.

It’s a perplexing thing to watch. It makes no logical sense to me. Yet, I’ve given up on explaining this to her. There is a phrase that my family is coming to understand, “You cannot make her understand, so stop explaining.” So, when I find myself getting frustrated trying to explain logical reasoning to her, I realize there is not always a point to trying to answer the “Why?” And ultimately, as long as she puts the knives away, there is little harm—as long as the rest of us are checking the dog’s dish.

Our family’s reassuring phrase is not too different from another useful reminder,

“God grant me the serenity to accept the things I cannot change,

 courage to change the things I can

and the wisdom to know the difference…”

The A Word

I will never forget the feeling of my heart pounding in my chest as I heard the doctor say those terrible words. My brother and I had been trying for years to get some help for our mother; trying to figure out what is wrong; trying to find some answers.

Divorced for thirty years, our mother has lived alone since 1998. We started seeing the hint of some odd behavior and the decline of her functioning ability in 2005. She was always very independent. A single mother, she had to work hard to provide for us.

My brother and I sit with our mother as she picks us up from summer camp in 1987. Our mom worked hard as a single mother to provide for us.

By 2010, we knew something was wrong. She could not keep a job. She would not pay her bills. She was easily upset and had emotional outbursts. I took her to an ice cream shop once. They did not have her favorite flavor. She yelled at the clerk and stomped out of the store.

Her house was in shambles, she could not take care of her home any longer. We asked her, pleaded with her to sell her house and move to an apartment. But the more we asked, the angrier she got. "I will NEVER leave my home," she screamed.

Three years later, in July 2013, my mother was 62 years old. I sat with her in a neurologist's office. He had just given her a verbal cognitive test about dates, basic mathematical ability and simple memory exercises. She was flush with fury and embarrassment. She could not remember the President's name. She did not know what year it was. She stumbled over numbers as she tried to calculate 40 minus 7. It was too uncomfortable to watch. The tension was so thick I was nauseous.

"Alzheimer's disease," the doctor said. It was as if he stuck a knife in my stomach. My mother gasped and stammered. "What good did that do?!" she yelled.