On January 18, 2015, at 77 years old, my Mom died peacefully at home from Lewy Body Dementia. My Mom was a beautiful person, inside and out. She was our Snow White. Snow White was her favorite Disney princess who was also “born” the same year as Mom- 1937. Mom was smart and sassy, with a great sense of humor that not everyone saw. She could be totally spiritual and totally irreverent at the same time. She loved her family fiercely and always strove to make home a beautiful pl
Still Alice is a novel by Lisa Genova. It follows a woman, Alice- Harvard professor, wife, and mother- who gets early onset Alzheimer's disease. The story is told from Alice’s perspective.
Right off the bat, what I think is vitally important is the name of the book and the fact that it is all told from Alice's perspective. Few books about dementia are written this way, even fiction. This is in part because we really do not know what goes on in the mind of someone with demen
[Image: FaceTime with my mom, dad, and sister. I love this photo because it shows that there is much more connection when you can see each other than when you just call.] My husband, son, and I were able to go to my parents home last week since my Mom, who has Lewy Body dementia, declined. She stopped eating and drinking, then ate and drank a bit, but then stopped again. My family and I had to go back to our home, across the country, and I am really sad that I cannot be there
[Image: Thanksgiving 2014. Rev. Katie's Mom sitting in a wheelchair by her grandson while watching television together.] Yesterday I wrote a post about how to decide if you will go home to be with your dying parent/loved one. I talked about how that post was written to focus mainly on the last few days or weeks of a person’s life and that overall if the relationship to your loved one is important to you, you will want to visit them often before it even gets to be their last d
My dad told me a few days ago that my mom has gotten much worse and is not taking any food and very little water. She has become mostly non-responsive, but is not in a coma. It looks like she might be actively dying, but we have no idea if she has days or weeks left. I then had to decide if I wanted to and could go home to be with her. I want to be clear that this is just a thought process around the very end of life. If we want a relationship with our loved one, then truly t
While the holidays are a time many of us feel a great pull to be with our loved ones with dementia, we may set them up for failure and possible decline due to our need to celebrate the holidays. For instance, my Mom almost always, in the last eight years, has had a bit of a decline after every major holiday or event where many people visited, and there were many events over a period of a few days. All of us have a hard time functioning when our brain is taxed by overstimulati
My Mom has always decorated our house for the holidays. At Christmas we had a huge tree with more ornaments than should have been put on it. She hung green garlands with red berries around the doors and put electric candles in every window of the house. She had two life-sized wooden Nutcracker cutouts and a beautiful Santa statue. And of course, we always switched out our daily dishes to the Christmas Spode, and made sure the tablecloth matched the plates. My Mom has had Lewy
I just saw this headline today: "Robin Williams driven to suicide by Lewy Body Dementia." I have so many issues with this and I wanted to share a few of the problems this headline brings up in our culture today. [Image: Rev. Katie Katie and her Mom working on an art project made to be accessible for the stage of Lewy Body Dementia Carol had at the time, in 2011.] Many of you may know that my Mom has been living with Lewy Body Dementia for eight years now and I live with menta
"Why Did Grandma Put Her Underwear in the Refrigerator?" is a short story which explains Alzheimer's disease to children. It is written by 17 year old Max Wallack who, at a young age, lived with and was a caregiver for his great grandmother.
Here is my quick review of this book:
This may be the best book I have read about Alzheimer's and advanced dementia care. It is simple and should be read by every person, adult or child, who knows someone with Alzheimer's disease/dement
Mom’s memory is getting worse and she is becoming more confused. Mom, again, today was looking for her porcelain dolls which are at her friends house and have been there for weeks. However today Mom was sure that the dolls were still at home and we needed to take them over to her friend. Both Dad and I told her numerous times that the dolls are not here and her friend has them. Mom looks at us, confused, and says “Why can’t I figure this out?” It is hard to watch her go throu