Good morning, everyone,
We are contemplating not having my sister attend the neurologist meeting on the 22nd. I watched her body language when the neurologist said, in December, "dementia with Lewy Bodies" and she was devastated. I'm afraid that a frankly worded summary will irreversibly and needlessly frighten her.
Right now, when she asks why she feels this way, or has she died because she feels so bad, I tell her that yes, there is a biological process going on that makes her body not as strong and makes it harder to think. But that we are all together taking care of each other and we always will. She seems overall content with trusting that explanation.
We are striving to give her an anchor of predictability in her schedule. Our two dogs continue to alert me when she is in another room but having a tough time. She loves having giant dogs watch over her when the aliens come.
We are having a tough time with some relatives thinking they need to share horror stories of life with this diagnosis.... that I'll never be able to keep my sister at home and... well... awful stuff. How do you make people realize/ set a boundary/ that it may be THEIR way to deal with problems, but our way is to find out what we need to know to keep her as well and happy as possible. And then take each day as it unfolds.
I was crying once, changing the litter for her kitties. I don't cry in front of her because it makes her worry. Anyway, kitties don't mind. And as I was helping the cats, I felt a whisper of wisdom in my heart:
"Anyone could love your sister for the last 70 years. She is intelligent, empathetic, well-read, witty, and good hearted in every way. But now, she is also struggling and very vulnerable. Now, in a way, is the most beautiful time in her life to love her. Watch for those moments when her spirit dances through the confusing darkness. Hold on to those moments. You'll take nothing for granted. You'll protect her as the fiercest mother tiger. You'll see that love can give a strength and hope beyond what medical science can provide." Maybe that thought will help someone else having similar challenges. Thank you for being here.

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