Brother Diagnosed With Lewy Body Dementia
This blog is written by my sister, Charlotte Bowles Baker. On two earlier blogs, she shared the impact of being a long-distance caregiver for both Mama and Daddy who both had dementia. In this blog, she shares the impact of now having a brother diagnosed with dementia with Lewy bodies.
Two or three years after Mama died with dementia, Robert started having health problems. He was losing weight, falling, blood pressure highs and lows, depression. When my husband and I saw him on Thanksgiving 2011, he was moving very slowly, and seemed out of touch with what was going on. He did not stay at his daughter's house very long that day. The future looked really bleak for him. It was like Robert's whole body was shutting down. One problem after another followed.
After seeing 8 doctors, he was diagnosed with Lewy Body Dementia. My first thought was, "Here we go again!" I had read an article about Lewy Body Dementia during the time Mama had Alzheimer's. I had no idea of all the dynamics involved in the disease. At least we had a diagnosis for what was going on in Robert's body.
This was another devastating experience. I knew what we had been through with Mama and Daddy. But neither of those prepared me for all the ramifications of this disease. For one thing I knew very little of what Mama and Daddy thought or felt as they progressed through the disease. People did not talk about dementia much in those days. Both of our parents were very private people and even in today's more open climate, I doubt that they would have shared much of what they were experiencing.
Times are drastically different than they were when our parents had dementia. I know much more of what is going on with Robert than with our parents. Technology has made it possible for me to better keep up with him and what he is going through. Everyday, I have some connection with him whether it be through phone calls, e-mails, texts, pictures, Facebook or Face Time. These venues have made it easier to live away from home. All of these do not take away the sadness or pain of seeing him experiencing such a disease. But there is joy in seeing how his faith is carrying him through such a difficult time.
Dementia Advocacy has made such a change in how people understand dementia. Videos, online chats, memory cafes, Facebook posts all enable the public to understand more about dementia. Just hearing about all Robert is doing wears me out. This has given him new purpose and meaning in life. He is living beyond dementia and showing others there is life after diagnosis. And there are so many others around the world who are involved in advocating for a disease that people have a tendency to shy away from.
In spite of Robert's cognitive skills as I write this, I see signs of diminishing skills. Physical decline is more apparent than mental. It hurts to see him on this journey, but like Daddy he is making the best of his situation.
Who knows if I will develop dementia? It's something I think about with my family history, but it's not something I'm obsessed about. Something is going to end our time on earth. You may know what that "something" is for you. At this point I do not. But I do know whatever happens to me, God goes with me, and one day I will meet Him face to face. There is peace in knowing Him.
©2015 Charlotte Bowles Bowles
Be LBD Strong!
Robert Bowles, Jr.