I used to notice when my mother said things that were “off the wall.” Now I tend to find myself noticing statements of her awareness instead. I find myself saying, “Wow, she is still on the ball with that remark!”
And so it is, that more often than not, she is not “on the ball.”
My new, lyric rhymes might be:
She’s not “on the ball”
Her statements are “off the wall!”
I started this post-name as: “I Miss the Way You Used to Be.”
But the “Dance of Dementia” continues for me.
What started out as a slow waltz has progressed to a much more frenetic dance. A notable change for me was the following realization:
The personality change is complete. The powerful mother I remember has left me forever. I now have a very anxious mother, who requires tremendous coaching and encouragement to get through her day.
My mom has benefited so much from having a caregiver five hours a day. Her caregiver, Miriam, has told me it is difficult for her to leave, because my mom becomes so sad and scared.
My mom consistently cannot call Miriam by her name. She calls her Mimi, Mary, or Marie. Of course, I know what she means, but I still keep trying to remind her. “Mom! Her name is Miriam!”
It is of no use.
Miriam called me last week when my mother had a rapidly worsening, eye infection. She had not yet received her antibiotic drops and it was mid-afternoon. I immediately called the nurse’s station. The next day when I called, Miriam said that my call achieved results and my mom was much better.
I am angry that my father does not want to hear about extending her caregiver’s hours. Soon, I plan to gather up my strength to counter his opposition. My heart tells me I must do whatever is necessary to make my mother more comfortable.
My life is much more manageable when I know she is managing!
Last week, I brought my guitar and performed at my mother’s nursing facility. I have been hoping to get a picture to post here soon (that was taken by a nurse).
When I arrived, my mom’s eyes were still terribly bloodshot. My mother smiled weakly when I came in carrying my guitar and gear bag. I grinned and stroked her arm. As we sat and waited for me to begin singing, I was taken aback by a comment she made. She said, “You see all these people coming in here? Well they’ve come here for one reason – they’re here to die.”
I said, “Are you sure about that, mom?” As with many of her “off the wall” remarks, I didn’t know what else to say. I didn’t think my music would kill them!
I was surprised to have such a large audience. There were perhaps thirty to forty residents encircling me. Everyone was so welcoming and warm. Despite my mother’s anxiety, she was thrilled to have me there. I played for almost forty-five minutes. When I looked over and saw how tired she looked, I knew it was time for me to stop.
Despite her fatigue, my mom radiated happiness. It was so meaningful for me!
I enjoyed every moment singing, because there was so much appreciation in that room. I played all the songs that I remembered my mother loved. Later on, she told me that she especially loved the second song I sang. I found that interesting. It was my wedding song, “Together.”
Two weeks ago, I decided to call my mother’s doctor. I finally expressed concern about her mental condition to a doctor. Recently, my mother had been assigned to a new doctor.
A few days later her new doctor called me and said my mother would be receiving a full physical and mental evaluation. She would discuss everything with me once the results came back. I felt glad that I had instigated the whole process.
Her doctor and I discussed the fact that two, typical medications to stave off dementia (Aricept and Namenda) would probably not be helpful and had too many detrimental, side effects. Well over a year ago, a different doctor prescribed those medications for her. My father did not want her to take them at that time.
It was interesting for me to remember that particular doctor’s words when he prescribed those medications for her last year. He said, “Your mother is quite demented.” I didn’t like the way he said that. It upset me. I switched doctors after that.
A lot has changed for my mother since then.
So now, I’ve decided I want confirmation of the fact that my mom has had a significant mental decline in the last few months. I’ve wondered if her mental decline could be a side effect of another medication or a deficiency; perhaps it could be something treatable?
My intuition tells me it is not treatable.
I was relaxed after my morning hypnotherapy session this morning. It was sunny earlier that morning, but as I walked to my car it was windy and cooler. There were leaves swirling around me as I deeply breathed in the autumn air. My plan was to take my mother out to lunch.
I knew I would surprise her, since I cannot tell her any kind of plan without giving her tremendous anxiety.
As I drove to her facility, my father called me. He said something had happened only a few minutes earlier – he wanted to prepare me. I listened and could feel my stomach tightening up.
It seemed that my mother was left alone in an unfamiliar bathroom too long. She was banging and calling for help; she had panicked and stood up. That was dangerous for her, and when the nurses came to her she was admonished.
My mother is often quite paranoid. When I arrived she was sobbing as soon as she saw me. She said she was a “prisoner!”
I told her I was going to take her out. Her face was ashen and so worried. I felt so powerful and important – she was helpless and small, and I was so “big.”
This memory came hurtling back – I was walking home from elementary school. There were two, large bullies following me; they were taunting me. I turned around and told them to stop. A fight ensued and I remember swinging my lunchbox at them. It was ineffective and I was gasping with the anger and frustration.
Suddenly, a car pulled up with my mother inside calling my name through the open passenger window. The bullies ran away. I jumped in the car, and I told my mother what had happened in between my racking sobs. She gunned the engine to chase the bullies.
The bullies went down an alley, and we didn’t see them. But they were scared and running away; that was all that mattered to me!
At that moment, my mom was wearing the cape I am wearing now!
“We’re escaping this place,” I told her. I practically raced with her wheelchair to my car. I lifted her into my minivan. She has had a harder and harder time getting out of her wheelchair.
As we had lunch, I managed to lift her spirits. She was still very confused and unable to find the words or names for simple things.
I danced along, not sure how often to point things out for her. I kept re-directing her to other topics, but she had a lot of difficulty letting go of what had happened before I arrived.
My heart broke when she said, “I told them how I wanted to call my daughter, and they laughed at me!”
When I asked her if she wanted me to get involved and file a complaint, she quickly said no. Her fear was palpable. She really believed she was imprisoned. It didn’t help at all to tell her otherwise.
I was surprised that she didn’t seem upset sharing that a friend of hers had recently died. Most of her friends have moved far away to live with or near their daughters. Another good friend of hers is so confused that my mother told me, “She keeps repeating herself!”
A week ago, I received a call from another friend of my mothers. She wanted to know if she should break the news to my mom that still another friend had a diagnosis of Alzheimer’s. That surprised me since I had spoken to this other friend and she always seemed fairly sharp.
I made it clear to this friend that it would not benefit my mother to share the information with her.
We were on our way back to the facility and I could feel relief flooding through me. I had managed so well with my cape on! Then my mother insisted that she knew my father held a secret job. I decided to argue with her.
I said, “Come on, mom! You know dad has no social skills or energy to hold a job! He doesn’t drive – where could he possibly be working? I don’t think he’s working for the facility!”
She said, “Well, he is working for them and I know exactly what his job is. You know, there are thieves in this facility! It’s his job to investigate!”
I couldn’t stop myself, as I explained all the reasons I could think of that this didn’t make sense.
Finally, I gave up. There was no point.
This “dance of dementia” is no longer graceful.
I parked at her facility and lifted her gently from my car into her wheelchair. She looked so tired.
When I came into the lobby of her building at the facility, I pushed her wheelchair up to the front desk. There were several nurses sitting there. They quickly told me what had happened, and how my mother had panicked in the bathroom. They insisted she had not been left alone for very long.
In my presence they smiled as they told her – you are not being punished or imprisoned!
Her lip was trembling, as she tried hard not to cry.
My voice was tight. I said, “I want a message sent to her doctor. It has been two weeks! I want to know what is going on with the mental evaluation. I am concerned about what is going on and I need to know!”
I cannot wait any longer to find out what I already know.
Below is a recent attachment that I found in my memorabilia box. It is a creative writing assignment I did in elementary school. It is similar to the story that I told in Dance of Dementia – Part 1. That was the story about how I was lost in the woods; except it’s interesting that the ending is different. The actual time when I was lost, I was rescued after I knocked on another cabin’s door and a woman drove me around. Interesting how in my writing assignment – well, I found my way out by myself!
Transcription of I Was Homesick
I sat quietly as our car bumped along the curvy road. Yawning, I noticed a sign. It said, “2 more miles to Lake Arrowhead.” I sensed that my family and I were almost there.
Fifteen minutes later the car screeched to a halt. A rickety cabin stood in front of me. “Hey ma,” I said, “Is this where we’re spending the weekend?”
She told me yes, and I (happily) examined the rustic house. There was an enticing smell throughout the house.
Subsequently, that night I woke up to the sunlight rays that broke through the window glaring down on me in the morning. I remembered that I had been allowed to explore around the house.
Walking out into the crisp morning air I saw a cluster of shiny flowers with glistening dw drops on them that intrigued me. I laid down and touched the soft, fragrant little petals when I noticed a mossy, gloomy trail.
I got up and followed the trail for a time when suddenly I came to a dead-end. The place was thick with growth so the path was hardly seen. I then noticed a long beautiful tree for climbing. I had just walked to the tree when I noticed a red berry bush.
Suddenly, I realized it was late and I’d better get back to the cabin. I looked around for the large climbing tree but it was not there. I searched for an hour it seemed to me, and finally I rested on a log. Sadly, I realized I was really lost. The rotted log I sat upon was swarming with ants.
Perversely, I stared about. I was homesick. I began to wish our family didn’t go on vacation. I wouldn’t have gotten lost otherwise. Nonchalantly, I noticed the branch of a tree blending with the overgrowth. “What camouflage,” I laughed. It was that same tree I wanted to climb. I found the path hurriedly and rushed back to the cabin. When I cam back I gasped. I had been gone only an hour. My parents weren’t even up. I wasn’t homesick anymore. In fact, I was happy that I wasn’t lost for long.
© 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.