THE DANCE OF DEMENTIA – PART 1

A page from my diary in 1977 when I was 17 years old.

Now my mom looks up to me as her “savior.”

It was Thursday afternoon. With Mother’s Day approaching, I hadn’t yet decided what to do for my mom. I take care of myself on Mother’s Day. Since losing my son eighteen years ago, there are times when I am very gentle with myself. I do not do things anymore that are painful or uncomfortable for me, especially on Mother’s Day.

On the actual day, there was a celebration scheduled at my mom’s facility. My brothers would be there, so I decided I would avoid the crowded, uncomfortable situation. She would certainly enjoy seeing my brothers and their family. I hoped my mother would understand, since she cares very much about me. I view almost every day with her as Mother’s Day!

On Tuesday, a new caregiver was supposed to begin working with my mother.

This would be the first time she would have someone outside of her nursing facility to care for her. I have decided that my mom needs more attention. My father does not reside at the same facility. After almost sixty years of marriage, they have been separated since my mom took ill at the end of November. She was released from the hospital at the end of January to a separate nursing facility.

On Wednesday, her new caregiver had a car problem.

On Thursday, her new caregiver quit. She told me there were some unresolved employment issues.

So I decided on Thursday, that I would take my mom to the hair salon!

It would be a wonderful Mother’s Day gift, because my mom had desperately wanted her hair colored for over two weeks now. The roots that showed were stark white. She would look beautiful for Mother’s Day.

Her facility has a hair salon. My recently deceased mother-in-law lived at the same facility as my mother. She used to share with me scathing comments about that hair salon. I won’t say what she told me, but I have noticed that most of the hairstyles of women at the facility are very similar.

When I was about twelve years old, my mother took me on a very special outing. We went “up a hill” to the exclusive, Sheraton Universal hotel. There was a fancy hair salon inside. I received a “shag haircut.” That haircut received so much attention, and my mother would cluck about how gorgeous I looked with it. My mother’s philosophy was drilled into me at that time.

She always said, “Your hair is your crowning glory!”

That stayed with me.

I hardly ever wear makeup. I don’t get manicures. I am not glamorous. However, I always make the time and make sure that I’m satisfied with a good haircut. This was a lesson I learned from my mother.

When I walked in to pick my mother up, the nursing supervisor handed me an envelope. She said, “A nurse turned in the money your mom gave her. It is against our policy for anyone to tip.”

I knew that. I’ve told my mom many times. I’ve written commendation notes for anyone my mom asked me to. I gave my mom some tiny boxes of chocolates to share. However, she was always asking me for money to add to her wallet. I thought perhaps she enjoyed shopping at the gift shop. But inside I knew. It was to give to the nurses.

When my grandmother was in a nursing home, my mother always gave money to her nurses. It was very important for her to do this.

When the nursing supervisor handed me the envelope, she added, “Your mother seems quite confused about all this!”

My mom was in her wheelchair listening all this time. She had no response. She looked tired. I told her, “Mom, I’m taking you to have your hair done! This is going to be wonderful outing!”

We were off toward my car. My mom was uncharacteristically quiet. I said to her, “Mom, you heard what the nursing supervisor said, didn’t you? You can’t tip the nurses here – it could get them fired.”

She said, “I didn’t tip the nurse. She stole it.”

Red flag!

“I started my day as Hercules, but I became Styx”

I wanted to use the metaphor to a Greek god, Hercules.

This was how I felt when I started my outing with my mother.

I left my house, filled with purpose, energy, and abundant patience. I love my mother very much, and I miss her friendship every single day.

However, after our outing, I was not Hercules anymore. I had to go to a list of Greek gods, to find the appropriate match. I picked the name “Styx.” This is what was listed:

“Styx, the eldest daughter of Okeanos (Ocean) and Tethys; any Immortal who pours the waters of Styx and swears an oath, is solemnly bound to tell only the truth.”

By my title, The Dance of Dementia, I am compelled to tell the truth.

There were three stages to my relationship with my mother:

1. I was little and my mother was very big. I was afraid of her. She was so powerful and everything was right or wrong. She was very certain about that. She loved me more than anything in the world. I loved her, too.

This stage lasted until I was 24.

2. I became an adult, and my mother was fallible. She was my best friend and my source of support. I was annoyed by her insistence that certain things were right or wrong, but I understood it was just how she was. She loved me more than anything in the world. I loved her, too.

This stage ended six years ago.

3. I am very big and my mother is little. She is very afraid of everything. I am all-powerful. There is still so much right and wrong in the world for my mother, but she is confused about all the things she used to find right and wrong. She loves me more than anything in the world. I love her, too.

I am so sad about this stage. Which stage will I remember most about my mother when she is gone?

The nursing facility does occasional tests on cognitive faculties. I don’t know any recent results. A doctor prescribed a medication that might halt my mother’s dementia, but my father wouldn’t allow her to take it last year. He doesn’t want my mom to take any more pills.

When they lived with me, it was a major project to set up their weekly medications in pillboxes. It was so complicated, that I was relieved when the facility took this over for them when they moved out. My parents lived with me for a year. When they moved out, I was relieved in many ways.

Sometimes, I miss my mother’s presence. She was so happy to be a part of my family’s daily activities. When she first moved in, she was “broken down.” Over time she became “rebuilt.” It all started with severe back problems and pain. After several falls, it became clear she could no longer live independently with my father.

Her current skeletal frame is so deformed, that I can only imagine how much pain she suffers from!

When I tell my father that my mother has become more and more confused, he says, “She’s just fragile.” My father has been deteriorating along with my mother, although he is in Assisted Living. He is my teenager.

My mom’s words are harder and harder to find. I try to help her find them, and she’s appreciative. But we’re dancing around and around.

There is a “dance of dementia” going on. I don’t know where the dance is leading. My mother doesn’t even know the dance is going on, except she is very frustrated by her difficulty to find her words.

I don’t want to see my mother upset.

We’re dancing around the dementia.

I am hurtling back through time to another memory about that.

I don’t know how old I was – perhaps I was about eight years old. I loved the outdoors. The smell of pine trees was intoxicating for me. My parents had taken us on a vacation to a small, rental cabin in Idyllwild. It was early in the morning and I was awake with excitement. Everyone was sleeping.

I opened a sliding glass door to the outside. It was a glorious morning! I saw amazing rocks, lizards, butterflies, and towering pine trees. I had to explore. As I walked through a backyard “wonderland,” I was pulled farther and farther from the cabin. There was something that I just had to see a few feet beyond where I was. I kept wandering. Suddenly, I couldn’t remember which way I had come from.

I began to panic. The “wonderland” was not wonderful anymore. I was lost. I found a road, and I walked down it past unfamiliar cabins. All that I could think of was, “Oh my god! What will my mother do when she finds out that I am missing?”

In my utter terror, I knocked on another cabin’s door. A nice lady answered. She asked me to describe my cabin. I remembered it had a long driveway. We went in her car and she drove to a house. I ran to the door, and with relief – I couldn’t believe how lucky I was that she had found the cabin!

When I went inside, my mother said, “Good morning, honey. Did you sleep well?”

She didn’t even know I was lost!

That is exactly how I feel now.

A picture taken several years ago when my mother lived with me.

I struggled with the heavy wheelchair as I put it in my car. At that moment, I knew I was definitely still Hercules, because I remembered how to fold it and put it inside my trunk.

My mother said, “Where are we going?” I had told her I was taking her to have her hair done. Another red flag.

I drove one block to a familiar hair salon where my mother had not been for five months. I told her hair stylist, “My mother was on a respirator for two months! It was an absolute miracle that she survived. She is excited to have her hair done again!”

I remember how I dreamed of this moment for my mom when she was in a hospital bed with the trachea tube in her neck. Her white roots at that time measured several inches.

It took fifteen minutes for my mother to get from the styling chair to the shampoo/rinsing area with her walker. Her back was hurting her. She gripped my arm tightly, and I patiently lowered her down. The stylist was so kind I wanted to cry.

My mother’s teeth were clenched, but she was still smiling. She wanted me to see how happy she was; but she was not feeling well at all.

She said, “I am so glad you are here. I feel so safe with you.”

When she said that, it was clear to me about the stages. It was so clear that I wished I could shatter that window.

I was not an experienced mother – who is? But honestly, I really didn’t know anything about babies.

Now, I had that same feeling with my mother. I was not equipped for this! I knew it was humiliating for her to have me see her like this. I pretended it wasn’t so. She pretended that she didn’t see me pretending.

We were dancing again.

The stylist was ready to cut her hair. My mother needed her purse, but it was missing. I looked in my car, but it was not there. Without her purse, my mother started to panic. Her purse represented her security blanket.

I asked her calmly if she wanted me to go back to her facility to find it. Now I was worried to leave her alone at the hair salon. She told me to go. I drove to her facility, ran to her room, and found it on a dresser. I quickly hurried back.

Now I was getting tired. I wished I could have stayed with being Hercules.

I became Styx.

It was too late to go back to the nursing facility to eat. I regretted that I hadn’t taken her there earlier. I could see she was tired, and it was already enough of an outing. But I had no choice. I brought her back to my home for dinner.

I drove to my house. It was only a ten-minute drive. My mother spent most of the time trying to find her sunglasses in her purse. I told her I would help her find them, but she insisted it was no problem. The last minute before we arrived at my home, I reached over and pulled them out of her purse for her.

I wasn’t sure that I was patient enough.

She accepted being in the wheelchair. I was very careful getting her into it. However, It felt a lot heavier to me now. I secretly worried – would I be able to get her back to her nursing facility safely? My husband and older son weren’t home, otherwise I would have asked for their help.

Now I was pretending to be Hercules.

I pushed her to our dinner table. I offered to cut her chicken, but she shook her head to say no. My heart skipped a beat when I saw her attempt to cut her chicken with a fork and spoon.

My mom didn’t have much appetite, however, she was very happy about her hairstyle. I ate quickly so I could be sure it wasn’t getting much later. There were only two more transport situations left – I needed to get her back into my car, and out of it one more time.

I asked my daughter to help me.

Later in the evening my daughter said to me, “Mom, what’s wrong with grandma? She sure didn’t make sense tonight.”

I thought my daughter would have known to pretend, too. Actually, she did pretend while she was with my mom. However with me, she was honest. She was too young for this dance!

My mother let out an audible moan as she got back into my car after dinner. She mentioned that she couldn’t find her glasses. I went back into my house to look for them. I was on my hands and knees under our dining room table looking.

They were in her purse.

I saw such a strong image at that moment. I was running a marathon – I could see the finish line. However, instead of everyone cheering, everyone was crying. Was this the end?

Was this the last time I would take her out of her facility?

Was this going to be my mother’s last Mother’s Day?

How could I be so honest as to even write those words?

I remember what I wrote about my son, Jason. Before he died, every moment was treasured. I could feel his little body close to mine, and I knew.

I know I won’t have my mother forever!

But just like there is pain with those “firsts” in bereavement, there are those “lasts.” The “lasts” are the things you know are almost over.

Only six months ago, I often took my mom to the movies with me. Her regression to that of a younger child has been occurring ever so gradually. Before that, she was more like a teenager. We could still have wonderful outings together. It happened more and more infrequently as her back pain became less manageable.

Sometimes, when I dropped her off at her assisted living facility, I felt like a parent waving a child off to school. She would say goodnight, kiss me, and then gingerly trudge off gripping her walker. I’d watch her walk through the glass doors. Her room was almost ½ block beyond.

I would watch her leave me while sitting in my car. I was wistful as I watched her, because I knew that her independence wouldn’t last.

I just knew.

I’m sharing my last moment of honesty.

It was when I dropped her off.

Every time I am at her facility, I am mistaken for an employee. I try to put on my blinders. Sometimes I can, and other times I cannot. I heard a plaintive voice call to me from another wheelchair. The voice said, “Please, someone – take me to the bathroom!”

That could have been my mother.

As I wheeled my mother in, I informed the nurses that it had been a difficult afternoon for her.

Someone would come to help her to bed right away, I was told.

As much as I wanted to leave, I could not. Now my mother needed the bathroom. A nurse had not come yet.

Oh, well. So, I needed to try to be Hercules a little longer.

She was in the bathroom when I heard a male voice. My heart froze – how embarrassing! The male voice said, “You can leave! I’m here to help your mom!”

I left there and spiraled into Styx immediately.

Later on, I found out my mother was running a slight fever. I realized it when I felt how warm she was in the bathroom.

Could that have explained everything?

It could have explained the confusion.

It could have explained the fatigue and lack of strength. However, there is one thing that is certain.

The dance will continue.


© Judy Unger and http://www.myjourneysinsight.com 2010. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Judy Unger with appropriate and specific direction to the original content.

About Judy

I'm an illustrator by profession. At this juncture in my life, I am pursuing my dream of writing and composing music. Every day of my life is precious!
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