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A Year of Learning and Self Awareness

By ScotCharles

July 10, 2013

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I was advised to retire on disability and to seek the help of a psychiatrist experienced with dementia. I retired and began to work with Dr. Alan Karme, a recognized expert on the psychiatric problems of dementia.

Working with Dr. Karme, I have come to realize that I am not hearing people’s thoughts. This was a bitter disappointment to me as I had convinced myself that hearing people’s thoughts made me psychic. The visual hallucinations of ghostly shapes, mainly in my peripheral vision, were not dead people communicating with me (I often heard these shapes talking to me). Again, a bitter disappointment, as I thought I could talk to dead people. Both visual, especially those in peripheral vision, and auditory hallucinations are hallmarks of dementia. Initially, Dr. Karme treated these hallucinations with Resperdol. Working with my therapist, I have learned to be self-aware of these hallucinations and to discount them, and I have quit taking Resperdol.

The problems with my executive function and my increasing inability to learn continue to be issues. I get so nervous in public, that I get panic attacks that cause my body to shut down. For this reason, I use a motorized wheelchair when I am out in public without the support of my partner, Jim. I take Lexapro for the panic attacks but refuse to take so much that I am drugged so I still run the risk of a panic attack. I am unable to handle the multiple inputs one has when driving and can no longer drive myself, a bear as I have to depend on others to go anywhere. I get lost reading novels and I lose the train of thought reading histories, my personal passion. I still read the financial and international news in the Financial Times and can glean the gist of articles even if I can’t remember the details. Everything was going fine with handling my dementia until one morning a few months ago I had my first experience of disassociation.

I spent the morning by myself watching old movies on TCM. My partner Jim gets up later than I do. When he came downstairs for the morning, I was in the kitchen. He said, “Good morning, pumpkin”. I did not know who he was and I didn’t know what he was doing with my mother. My mother has been dead for eleven years. I was seized with dread. Until this experience, I never understood how mentally painful dementia is. I became afraid and confused, but I had sufficient self awareness to keep telling myself “This isn’t real, this isn’t real.” I didn’t respond to Jim’s good morning; but, he was so sleepy he didn’t care. After what seemed an eternity, I realized who Jim was and the fear and confusion passed. I remembered the episode in exact detail.

I described the incident to my psychiatrist during our next session. He was concerned, but assured me I shouldn’t worry about it. Yet, the memory of the fear and confusion I experienced with that period of disassociation continues to haunt me.

My advice to anyone who is experiencing HIV dementia in whatever form is to first be in the moment. Do not let the trap of future tripping make you blind to the beauty and potential of the present moment. One never knows how life will turn out so don’t worry about it. It is better to stay in the present and seize the day.

Second, do not go gently into that good night. Learn to be self aware of the issues caused by dementia and how to deal with them. Stay calm. Take tranquilizers, if you have to, there is no shame in needing the help of meds to cope with life. However, do not allow yourself to become so drugged that you lose the ability to lead a full and meaningful life. Doctors want foremost for the illness to go away and will prescribe as many drugs as necessary to do that. Work with a therapist on recognizing issues through self awareness and learn how to deal with them without the use of heavy medication. Work with your psychiatrist on the medication mix that best allows you to be both self aware and knock the points from your symptoms.

Third, stay active. I garden and read. Gardening is a good hobby for me. I stay in the moment while working in the garden. I concentrate on the task at hand, like a Zen monk. I have learned when reading to concentrate on the beauty of the flow of words even if I cannot remember what I just read. I am reading Richard Price’s novel, Lush Life, which is hard going for me as he jumps around in place and time in his book; but, even if I have trouble comprehending the story line, I can enjoy his beautiful prose. I you have a hard time understanding a newspaper article don’t be afraid to study it.

Fourth, to repeat myself on an important issue, become self aware. Try writing in a journal and taking a walk every morning. Try using the lessons in Julia Cameron’s The Artist’s Way and The Vein of Gold to develop your self-awareness. Work with a therapist. Meditate. Talk to a friend or loved one. Go to the theater, the opera, a concert. At Epidaurus, the ancient Greeks used theater to bring about a catharsis in the belief a healing would occur. They were right. Sometimes at a performance, one sees oneself as never before. A priest once told me that redemption was a journey in which we traveled to ourselves and saw ourselves for the first time. The root word, redeem, means to buy back. In traveling to ourselves, we buy back the self awareness we lost.

Enough with dreary memories and advice. My garden this year won award as a heritage garden that adds to the livability of the neighborhood. I have worked on the garden for ten years and finally I seem to have gotten it right. My neighbors nominated me for the award by which I am thrilled and humbled. I may have done a lot of work; but, in the end it is Nature that did the greater part.

All the best and I promise to write more often.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neurological and Neurocognitive Complications of HIV/AIDS


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Life Is a River



ScotCharles was born in Mineral Wells, Texas. He has been HIV positive since September 1984, and received an AIDS diagnosis in April 2004. He graduated cum laude from Georgia State University in Atlanta, and got his MBA with honors at the University of Edinburgh in Scotland. He's also a certified public accountant and a member of the Honorable Order of Kentucky Colonels. He's been married to his partner, Jim, for 30 years. ScotCharles' hobbies are gardening and water color painting. He and Jim have a sable tabby cat named Pickles who runs the house. ScotCharles is a retiree and regular poster to's Bulletin Boards.

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