The one thing that is predicable about Lewy Body Dementia is that the disease itself is UNPREDICTABLE. Most people without LBD, probably wake up in the morning with a facial expression that may reflect their emotions for that day and often those emotions might remain throughout the course of the day.
Enter LBD into my world. Chaos follows and many faces of LBD are alive and well in my mind and body. Questions flood my mind. Why is this happening? When will it change? Will it ever change? Will another face show up today? Where will I go? What will I do? Can I change my face today? Will I be wearing multiple faces before the day is over? So many more questions may occur that allow my brain to run rampant with thoughts of what might lie ahead. I have my faith to cling to. My faith sustains me through everything in my life. My faith calms the storms of LBD when they appear.
I have created an acrostic, HEDASS. This acrostic represents (1) Happy (2) Embaressed (3) Disgust (4) Angry (5) Surprised (6) Sad. It is important to realize there are so many more emotions taking place in the person with dementia. The face that I wake up with may not be the face that I go to bed with. As the day progresses from waking up to going to sleep, there may be multiple faces that will rear their ugly head. Sometimes, there are many faces occurring all at one time. The emotions present can often become like a game of ping pong, bouncing from one side to the other.
Happy - I think about all of the good things that many of my friends are doing in creating awareness about dementia and the impact that it has on their lives. So many people are begging to realize there is life after a diagnosis of dementia. While I desire that a cure for dementia will be found, I am thankful that I have a clear and concise understanding of my disease and the feelings that might occur.
Being able to describe them with the goal of helping other persons with dementia (PWD)) and care partners brings happiness to my life.
Embarrassed - I am fortunate that this is an emotion that I do not have to deal with at the present. If or when I lose my filters, I am confident that I would be highly embarrassed at that point. I can only hope that I do not realize that I am doing something that would be embarrassing. For many though, the stigma that far all too long has been given to dementia has caused many PWD to isolate and attempt to live with their disease by themselves. This can be very problematic because socdialization is one of the most important things a PWD can do. Socialization will often improve the quality of life in the early to moderate stages of the disease.
DISGUST - It is disgusting to think about one of my loved ones having to change my diaper. Also, it is humiliating to have anyone have to change my diaper.
ANGRY - I am angry at LBD. I hate this face. LBD is one of the most horrific diseases that I know of. The motor problems of Parkinson's, the cognitive problems of Alzheimer's, the psychiatric problems that include hallucinations, dream acting, nightmare and delusions are all part of this disease. It is such a multifaced disease that invokes its rage into so much of an individual.
SURPRISED - I must admit that I am a bit surprised that I am doing so well in my journey with LBD at the present time. The statistics that I read following my diagnosis were devastating. I simply decided that I was not a statistic, but was created by God with certain inalienable rights. I am thankful for the new purpose that God gave me in my life with LBD. My purpose in life enables me to forge ahead and live with LBD well.
SAD - Sadness permeates my inner being. The only fear that I have is thinking about what my wife and family might have to go through with this horrific disease. They deserve so much more and should not be facing this journey.
For now, I will forge ahead and live with LBD well!
©2015 Robert Bowles
Robert Bowles, Jr.