LIVE LIFE TO THE FULLEST
LIKE NEVER BEFORE
Losing my train of thought brings on so many emotions. First comes anger. I am angry; and I hate Lewy body dementia (LBD) or any other type dementia. All dementia are both horrific and life challenging. With LBD, the motor problems and psychiatric problems including hallucinations of small animals and children, delusions, dream acting and nightmares are added to the cognitive problems seen in other dementia. LBD produces the highest and lowest roller coaster that you will every ride. The changes that take place during any given day may represent both the highs and the lows. There is no way to predict hour by hour what the day will be like. I have found that it is important to bask in the good times and rest and relax in the bad times. The sooner I see the changes occurring and take appropriate actions, I tend to return to my “norm” sooner.
Second comes frustration for me. I may become frustrated that I can no longer function at the same level I once did. I get frustrated that I am losing valuable time. I get frustrated frustrated that some people are impatient with my delayed response. My memory is largely intact; however, the time that is required for my response has significantly increased. I feel that through their embarrassment, they try to make additional comments to ease my frustration. It is important for them to know that they can not ease my frustration. There is nothing they can do or say that will alter my situation. While I do not want sympathy for what I am experiencing, I do want understanding and patience to be offered. After all, I am still Robert Bowles.
Third come embarrassment. I may become embarrassed because I know that many people do not understand and that leads to additional frustration. It can become a vicious cycle. I long for the day that there will be more education and better education about how to interact and communicate with a person with dementia. Just like care partners, persons with dementia are doing the best they can do
Fourth comes regret. I regret that I can not do all I want to do in dementia awareness and helping to create a better understanding of interacting and communicating with someone who has dementia. My brain continues to run rampant with ideas of how to more effectively help others to a have a better understanding of what it is like to live with dementia.
I am about to go into my tired brain syndrome (TBS) so I will stop for now. Maybe later, I will be able to share additional thoughts on this topic.
©2015 Robert Bowles
Barbara on 02/01/2015 2:17pm
Thank you Robert, for explaining the emotions that my husband is experiencing. He was diagnosed Feb13, is doing quit well, though he cannot function mentally at your level. And he has just had the flu, which has caused physical detioration.
Robert Bowles on 02/01/2015 2:58pm
Barbara, I would like to set up a virtual meeting with him if he would like. Just let me know!
Beth on 02/01/2015 3:39pm
I really enjoyed this post, Robert! I live with and care for my mother in-law with LBD and this gave me some clarity and understanding about what is going on in her head.
Robert Bowles on 02/01/2015 6:59pm
Beth, thanks for your comments
((Originally posted 2015 February 01 at lbdlivingbeyonddiagnosis))
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