Journey to the Center of Dementia

Recently I wrote a poem called "Pinholes Sometimes Lead To Sunshine."

Some people thought maybe it was about being unheard or feeling alienated or being left behind. A lot of people thought I was writing about myself.

Let me state this poem is not about me.

What is on the surface of this poem is not what is at the root. Terms such as "Unfolding sundown" and "Empty homestead" are clues to the deeper meaning of the poem.

Feeling unseen or ignored are just reactions or elements of the root.

In my writing the surface is usually not the means. What you read on the surface is only a pathway to the root of what is buried underneath.

Every word I've chosen was chosen by design and each line has a deeper symbolic meaning.

Now I am going to attempt to dissect this poem line by line in order to describe the meaning of this poem.

Small…

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Little…

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Invisible…

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Unseen…

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These first four words describe how a mental illness can go undetected by friends and family of the afflicted. When it begins it's almost not noticeable. Unusual behaviors are sometimes looked at as a "senior moment" or even laughed off as humor. Physiological brain disorders are even harder to detect in their earliest stages.

I am meek

Am I weak?

Once the physiological brain disorder takes root the afflicted begins going through behavioral changes. Generally, at the beginning they become quiet, meek, they retreat into themselves as they try and figure out what's going on inside. They won't tell anybody that something is wrong for fear of looking or sounding weak. So maybe if the afflicted ignores the little invisible signs and remains quiet about it he or she can remain strong or give the perception of strength. After all, who would ever want to lose their independence?

Walking this world

Moss under my feet

Eyes that don't see

Is nothing complete?

"Walking this world / Moss under my feet" is where this becomes personal. This is about my mom. In her journey of life, she has experienced much and has gone through many ups and downs. Moss under my feet symbolizes that growth and strength. Moss thrives in many different environments and has had many uses: environmental, structural, medicinal, and ornamental. This speaks to my mom's strength as she has journeyed through her afflictions and she has been able to survive through various situations - extreme poverty, divorce, fear of being alone, etc. She is a very strong woman - just like that moss which seems to take root and grow almost anywhere my mom has succeeded everywhere she's been.

"Eyes that don't see / Is nothing complete?" My mom is completely blind. She became blind in 2010 at the age of 73. I ask the question, "Is nothing complete?" I'm putting an emphasis on the word nothing. My Mom is completely blind. She sees nothing - just darkness, sometimes light. At the same time her brain is deteriorating. There are many holes, empty spaces in her brain which create stances of nothingness in her thought patterns. Sometimes she sits there almost lifeless. She's not processing any thoughts; she's just sitting there. She's not happy, she's not sad - just there. So, I ponder, is this nothingness going to be what completes the cycle of her life? Is this where she gets off the train? Does she exit with a brain that is devoid of matter and process? Her life will be completed with a blank slate.

Long lost comfort

Slingshot from my seat

Dragged through the mud

Fragmented and beat

A person in the advanced stages of dementia has troubles with comfort. Oftentimes they are continuously adjusting themselves while they sit or are lying in bed. It is a challenge for them to find comfort. The line "Slingshot from my seat" reflects that constant trying to find comfort. Dementia is like being removed or ejected from all your comfort zones and shot into a place of discomfort and confusion.

"Dragged through the mud" and "Fragmented and beat" are both self-explanatory. They are the result of being "shot from your seat" and ejected from your zone of comfort, time and time again. After a while you begin to physically feel like you have been dragged through the mud. And not only is your mind becoming fragmented, but your body is also falling apart, and you get to the point where you just feel that the disease has won. You feel beat.

Empty homestead

Am I obsolete?

Darkened shadow

No warmth for cold feet

The person afflicted with advanced stage dementia experiences a lot of mismatched and disorganized activity in the brain. One such symptom of this activity is the feeling of being away from home eventhough the person is at home. It's a feeling of emptiness because the only thing the afflicted wants is to go home. They will ask constantly, "Please take me home. I wanna go home." One time my mom said to me, "Why don't you take me home? Don't I matter anymore?"

Cold feet refers to fear or apprehension. When my mom is experiencing the emptiness of perpetually being away from home, she becomes fearful or suspicious of everything in her current surroundings. She cannot or will not use anything where she is currently in her mind. If she does, then that is an acceptance that she will never make it back home. One time she had to use the toilet. So, I take her to the bathroom, and she says, "I am not going to use this toilet - eventhough it was the toilet she uses everyday. I'll wait until I get home." No matter what I said she just would not use the toilet and she ended up going pee in her pants. Another time she had gone on for several hours. Seven, maybe eight hours. Her fear and want to go home were so strong that even the medications did not work. After a while she kept saying, "I'm tired. Take me home so I can go to sleep." I tried several things to make her feel like I brought her home - even a ride in the car - but nothing worked. My mom looked so tired and even her voice became weak. So, I said to her, "Why don't you just lie down here? It's a beautiful room and the bed is clean and comfortable. I will take you home in the morning." She flat out refused. She said, "No, I want to sleep in my bed." Her hands were shaking. She was nervous. She would not sleep in the bed I presented to her because in her mind it would mean that she would never see her home again. For my mom there is no comfort or resolution for her cold feet except for "going home." It's a vicious cycle - because no matter what you do or try, she just never had the feeling of home eventhough she was at home the entire time. "Darkened shadow" is a transitory line to keep the poem moving along and describes the mood of the moment.

I am nothing

Crying in defeat

Calling for mom

Skidding on the street

Dementia is like skidding on a street… an icy street. It is a loss of control of your own life. That is a person's worst nightmare. You can no longer take care of your life. You become completely dependent on someone else for everything - feed you, wipe your behind, bathe you, dress you, etc. Your life is out of control.

It's like you are a nobody now. You don't even make your own decisions anymore. There have been times when she wakes up in the middle of the night crying out for her mom, "Momma, momma." I will come up close to her and speak in a soft voice, "Yes, honey. What do you need?" In this one instance she said to me, "Just hold me momma. I'm scared."

Folding sundown

Looking for retreat

Need protection

I'm here don't delete

What I have been describing to you is called "sundowning." Sundowning is restlessness, agitation, irritability, or confusion that can begin or worsen during the late afternoon or early evening hours and continue through the night. I used the term "Folding sundown" as, in most instances, when the sundowning begins you can expect the patient (your loved one) to fall asleep within an hour. Therefore, sundowning is a sort of folding up and putting away of the day.

Sundowning is your loved one’s desire to find a retreat, some relaxation or sleep. But as the day goes on and they become tired their mind also gets tired and in the person with advanced dementia a tired mind brings out confusion which leads to fear, anxiety and a host of other uncomfortable feelings. They just do not know how to go about finding that retreat and entering that comfort zone. One time my mom kept tossing and turning from one side of the bed to the other side of her bed moving non-stop. This went on for several hours. I asked her if she was okay. Her response was, "I don't know, I don't know. I just can't help it; I can't seem to get comfortable."

"Need protection" goes back to crying out for mom and empty homestead. The person with dementia and especially when they are experiencing sundowning, is in a dire state of needing protection. They need to feel safe. Several nights I have had to lie down next to my mom in her bed and hold her until she finally falls asleep. There are times when this would take 5 to 6 hours.

In that need for protection the patient becomes very afraid of being forgotten or left behind (I'm here don't delete). They fear that if you let go of their hand you will never come back. In one instance I had to use the toilet and could not wait any longer. I was holding my mom's hand. I let her know I would be back in three minutes. I even promised her. Her response was, "Don't forget about me, because I am still here. I'll be waiting for you."

I cannot see it

But it's gleaming through a pinhole

This last part is specific to my mom's condition. As she is not only afflicted with Dementia but she is also completely blind (and struggles with major depressive disorder).

Several months back she was talking about being blind. She was speaking as if I was unaware that she was blind. She said, "I'm blind. That's why I need help."

I responded, as if this was new information to me, "Oh really?"

"Yes, I'm blind. I've been this way for a while. I can't see anything."

"You can't see anything?" I responded.

"Well sometimes, way in the back it's really dark, I can see a little tiny hole of light. But it's far away and I can't really see what it is."

"What do you think that little light in the hole is?" I asked her.

Her response: "It's the sun."

You can read the original poem here: