The light bulb above represents some possible answers to what triggered my most recent emotional outbursts. I have been preparing for our "Day of Dementia Education with Teepa Snow since February 2015. I have expended hundreds of hours since February 2015 to achieve a great event. The event will be on August 30, 2016. We will have 900 people attending. Presently we have 750 registered. This has been and will continue to be a wonderful and joyous experience for me. I see the potential for 900 lives being transformed.
Care-giving is a very difficult responsibility. As caregivers implement Teepa's teaching, their quality of life will likely improve. Many times the caregiver causes triggers to take place in their loved-one. It is not planned nor is it done on purpose. Likely it occurs because of the stress the caregiver is under. These triggers may often result in antipsychotic medications being given that have significant side effects. Decreasing or eliminating those triggers will help improve the quality life of the loved-one.
Being part of changing the culture of dementia is one of my main focuses in life. The purpose this gives me has enabled me to do things I have never done before. It has enabled me to have higher scores on my neuropsycholical tests than I did at the time of diagnosis in 2012.
With all of my efforts in planning this event, there appears to be some collateral damage. While my neuropsychological tests have been higher, my processing and retrieval have declined along with an increase in dreams, audio hallucinations, visual hallucinations, nightmares and dream acting. These are occurring an average of once a week. Sometimes all of these things are taking place at the same time throughout the night without me ever waking up. My trigger related emotional outbursts have increased.
Where do you turn when you find yourself in this situation. All of us have choices. I chose to turn to a trusted friend. He is in his 13th year of living with Alzheimer's. He fully understands the dynamics of living with dementia. We have become like twin brothers.
My first three and one-half years after selling my pharmacy were filled with a lot of difficult situations. First it took eight physicians and eighteen months to receive my diagnosis. I was sleeping 16 to 20 hours a day. My wife would wake me up and tell me to eat, brush my teeth and go the restroom. One and one-half years later, my colon ruptured. Within one hour, I was in the operating room for emergency surgery. I came out of surgery, and I had a new attachment to my body. It was an ileostomy on my right side. Three months later, my ileostomy ruptured. More emergency surgery. Three months later, there was cervical disc replacement. I had been put to sleep three times in six months. I was at very low spot in my life.
What happens when you get to a low spot in your life? All of us have a choice. I chose to find resources. The first resource I found was Dementia Mentors. Their inaugural Virtual Memory Cafe was in June 2014. Harry Urban led that first cafe. He had been living with Alzheimer's for 12 years. After the cafe, I asked Harry if he and I could chat that afternoon. His answer was "of course we can." Harry fully understands the dynamics of living with dementia, and he enjoys sharing his knowledge and life experiences with other dementia families. That afternoon he became a mentor to me and our friendship has grown much stronger. When I am down , he lifts me up. When he is down, I lift him up. We tag team. Harry is now in his 13 year of dementia and spends many hours helping others that are groping in darkness.
Paul Harvey's comment was always "and the rest of the story". Return to my blog tomorrow and you will read the rest of the story....."The Light Bulb Came On and There Is Hope!
© August 6, 1016 Robert Bowles
Robert Bowles, Jr.