I ran across this blog today – “Lewy, Momma, and Me.” The subtitle is: “how to deal with Lewy Body with faith and humor.” The author is Stacey Beisler, who is caring for her mother with LBD. Stacey says:
“I am into year four of caring for my momma who has Lewy Body Dementia. This journey has caused laughter and tears and many long discussions with God. There are so many stories to tell, so I started this blog. I hope you find something to encourage you on your own journey through LBD.”
The first post is from June 2014. Below I’ve copied a post titled “Back to normal” from August 2014.
Back to normal
from the “Lewy, Momma, and Me” blog
August 31, 2014
As I have stated before, the words normal and Lewy can never actually co-exist, but these last few days have been “uneventful”. This translates to our new normal.
So I am weaning Momma off of Seroquel. The 200 mg was too much and caused a bad week of being up all night with hallucinations and then non-stop talking the next day. This drug is an anti-psychotic that can work well for awhile and then start to have negative side effects. From my readings, if I take her totally off the Seroquel then we will have to deal with depression. The advice is to get them involved in activities, keep them distracted, etc. But since Momma is immobile due to her bad legs she spends all day watching TV in her living room lift chair.
Everything is a trade off. Depression versus up at 4 am wanting to call the police? Hmmmm…tough call that one! Since sleep deprivation is detrimental to health, we are continuing the medication reduction. You know how people talk about you can’t take care of others if you don’t take care of yourself? TRUE. I am so NOT a martyr. I will ask for and take help wherever I can get it. And I have loads of help. It’s just that LEWY is around 24/7 and that times 52… well, you get the picture.
In the meantime, I am happy for this respite of “normal” and will rejoice and be glad in the day!!