Caregiver Help Workshop

This week, I attended the Education for Public Health Grant event held at Pittsburg State University in Pittsburg, Kansas. The workshop was presented by Elaine K. Sanchez, author, speaker and co-founder of CaregiverHelp.com 

The program details caught my eye:

• Coping with Caregiver Anger and Guilt
• Understanding Caregiver Depression and Grief
• Managing Dementia-Related Challenging Behaviors
• Developing a Plan for Self Care

The presentation was directed at caregivers, nursing students and care professionals. As I watched the young students in the audience, I was glad to see that emerging professionals are being made aware of the unique challenges that Alzheimer's and dementia patients face, as well as the obstacles caregivers have to overcome.

I was reminded to develop a better plan for self care and comforted knowing that others have faced many of the same difficulties we are facing as caregivers.

Disease Progression

Earlier this month, we were shocked and saddened to realize that my mother has begun having hallucinations.

Seeing the stages of her disease progression is disheartening. We are realizing that we are reaching the limits of our ability to care for her in her home. We have begun the daunting task of exploring options for the next phase of her care.

Unraveling: a caregiver's journey of discovery

On December 9, 2015, I presented my graduate school applied research project to complete my Master of Arts degree in Communication, Unraveling: a caregiver's journey of discovery, an auto-ethnography documentary film. My defense was approved and scored by my committee 'with honors'.

I shared with my committee and those in attendance that during my project, there were times during the last two years that I wished I had selected a thesis option--how that would have been easier. How it would have been much easier to select a subject that I was not so personally connected to, one not so intertwined with.

However, I know that I was called to share this experience of caregiving for my mother who has early-onset Alzheimer's disease. I am grateful to have had this opportunity to capture and share this story. And I am so thankful for those who challenged me to pursue this project. Those who encouraged me to keep going even when it got difficult. Those who supported me when I felt like quitting. And those who comforted me when there were no words, only tears.

Coming soon, the trailer: The heart behind Unraveling.

Can she feel it?

I have noticed that sometimes my mother will touch her head when having mental strain. In one of the video sequences I shot for my documentary film, I noticed that when she completely forgot her train of thought, she touched her temple and rubbed up onto the front part of her head, above her forehead.

She has been experiencing headaches in the last 3 months. More than normal. At one point, we took her to urgent care after several days of headaches and a spike in confusion, disorientation and overall behavior decline. The examination revealed no specific, treatable physical ailment. It was disheartening to see.

My family and I have lived with my mother to care for her for over 3 years. We rarely have visitors since this increases her anxiety. This weekend however, we had my husband's parents over to visit for 4 hours. My mother would not come out of her bedroom while they were there. She was visibly upset, uncomfortable and agitated. She lay on her bed, covered up with a blanket except for the times she seemingly had forgotten the visitors were there. She would come out of her room every 90 minutes or so, look around and then go back in. After they left, she told me she had a terrible headache. She pointed to the middle of her scalp and said, "It hurts from here, all the way down," running her fingers forward to her forehead. As she made this motion, I realized this is the frontal lobe of her brain.

A sickening feeling washed over me. It's as if she is feeling her brain die.

Since she had breast cancer in 2010, her doctors were originally looking for brain cancer. Cancer is treatable. Cancer, even sometimes brain cancer, is operable. I recall her first physician telling us after her second brain scan, "Her brain shows signs of shrinkage and damage."

The 36-Hour Day

When my mother was first diagnosed in 2012, a few close friends shared valuable books and resources with me. One of which was The 36-Hour Day, a family guide to caring for people who have Alzheimer's disease, related dementias, and memory loss. When I first got the book, I opened it and started pouring over the pages immediately. I stopped in the first chapter. The personal stories were too much for me to bear. Now, three years later, as the disease has progressed, the words jump off the page.

"Because they are diseases of the mind, you are faced with losing companionship and communication; with the tasks of dressing, feeding, and toileting the person; and with difficult behavior. These diseases last many years ... Many caregivers are doing little more than surviving--just barely hanging on," (Mace & Rabins, p. 320, 2012).

As I consider the next phase in her care, I am hitting some roadblocks as I search for direction and guidance. Some of these roadblocks are societal, regional and situational. And some are internal.

As Mace and Rabins suggest, it is important to get outside help before you have reached the point of being overwhelmed.

A Day in the Life of an Alzheimer's Caregiving Family

My summer graduate course was a study in philosophy and ethics in mass communication. It allowed me an opportunity to analyze some of the ethical issues surrounding my mother's care.

When caring for someone with Alzheimer’s disease, teleological and personalist/subjective ethics are constantly in a dance. Sometimes they move in sync and sometimes one must be abandoned for the other. There is no hard deontological stance to be taken. There are ethical questions that grip me daily. The dilemmas that have to be faced have no easy answers. The clear deontological ‘yes is always yes and no is always no’ can no longer apply.

I mourn the slow death of my mother. I mourn what I wish I had—a mother that I could talk with, be comforted by. I mourn for her, the life she could have had. I pray for mercy for her. I hope beyond hope that she is not frightened, that she does not suffer. I am brokenhearted that her friends, neighbors and extended family have all drifted away. Glen Campbell’s words are haunting, “I’m never gonna know what you go through.” It is painful to know that she is not in a position to have a traditional mother-daughter relationship with me and that I cannot share with her what I am going through.

On a professional level, I wrestle with loyalties in making a documentary of this story. On some deontological levels, it is difficult to share the private moments of living with this disease. On teleological and personalist/subjective levels, by sharing the realities of this experience, it could bring awareness about Alzheimer’s disease. Her story and my story could help families as they navigate their own decisions surrounding caregiving. On a personal level, I hope to move through this phase of decision making for her care to a place where I can embrace and remember the earlier years of her life. In the words of Dixie Chicks, “… try to connect all the pieces you left. I will carry it on and let you forget. And I’ll remember the years when your mind was clear. How the laughter and life filled up this silent house.”

I completed phase two of my documentary preparation. This is a preliminary creation meant to be implemented as pieces into the larger story. However, it shows some of the painful realities of what a caregiver faces.

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.

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.

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.