Written by my friend Robert Bowles.
With Robert’s permission, these 2015 pages were taken from Robert’s website LBD Living Beyond Diagnosis, in case it was decommissioned. That website is no longer available, so i am glad they are shared here:
LIVE LIFE TO THE FULLEST
LIKE NEVER BEFORE
Welcome to my world of living with dementia of the Lewy Body type (LBD). I have opened the door, and you have chosen to come in. While I wished I had never had to open the door, I am thankful that you have chosen to come inside. You are important to me, and I need you in my life. Please never forget that you have come into my world.
It is important to remember not to argue with a person with dementia. If you have ever been inclined to think you might win the argument, I would suggest that you think again. This is one of many things that I really do not like about my world of dementia. While I have always been opinionated, I never liked to argue.
What you see in my world is real to me. My disease has progressed to the point that my filters are sometimes less than desirable. Sometimes, I feel humiliated because I cannot control my emotions; and, I feel frantic and there is nowhere that I can go to remove myself from that feeling. Sometimes, I even feel like I’m being disrespected.
Often, there are people who come into my world who do not want to be there. I am sorry that you might feel uncomfortable in my world; but, I still need you in my world. I need all the socialization that I can muster because it improves my overall sense of well-being. I long for the day when there will be a better understanding of what it is like to live with dementia. Deep within my soul, I want the lives of the person with dementia, their care partners, friends and others to be the best that it can be. I cannot alter the path of my disease; however, most likely you can make small changes that will enable you to enjoy the peace that I experience.
Even though I do not like my world, I am comfortable in it so long as I have calm and peace. You are integral part of making that happen. Together, we can enjoy life when this occurs. I want you to have just as much peace in your life as I do.
Please remember when you come into my world, there might be things that you do not like; but, I am thankful you are here. I still need you to come into my world; and, I am still Robert Bowles.
©2015 Robert Bowles
Thank you so much for your comments. I feel the same way. Some times I feel as if I should just never talk to anyone again because I don’t seen to any a control. Most of all I think I am just frightened by the changes that are happening inside my head and outside my body. It all changes so fast, so quickly, without warning. I have lost control.
Robert Bowles on 01/28/2015 11:10am
Thanks to all of you for your comments
Christine O’Morrow on 01/28/2015 6:21am
Mr. Bowles, thank you so much for your insightful picture of living with LBD. We all appreciate your spirit and pray that you continue on writing and educating us!
Robert Bowles on 01/28/2015 11:11am
Thanks for your comment
Wendy on 01/28/2015 9:32am
Well done it was spot on
Robert Bowles on 01/28/2015 11:11am
Custom Essay Writing Services Link on 08/26/2015 8:46am
Thank you for inspiring me.Yes, I am so much willing to enter your world, to know you, and to tell you that there is nothing wrong living in a different world, You are just too unique to live in a normal world. I love how you have written this article and started to inspire us. Because of you, I aprreciate my life. Don’t worry, in your world, there is hope. 🙂
Robert Bowles’ index of pages in my WebSpace is at https://truthfulkindness.com/index-persons-with-dementia-pwd/robert-bowles-jr/ .
((Originally posted 2015 January 27 at lbdlivingbeyonddiagnosis))
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