Lately when I talk with Dad on the phone he repeats everything back to me, practically word for word. I’m not sure if he’s doing it because he’s making sure he hears everything correctly, or, he’s not able to focus on the conversation so he parrots what you say as if he’s able to follow along. I have the suspicion it the latter as it’s easy to tell over the phone when he’s out of sorts. When he is having a good day, he’s able to ask questions and engage a little more. When it’s a bad day, I have to lead the conversation and constantly talk and wait for Dad to repeat me, sentence after sentence. Even when he is having a bad day (which is just about every day lately) he’s eager to talk with me over the phone so that’s still a good sign he hasn’t lost all focus, interest or ability.
I do find it amazing that even when Dad is having a bad day, Dad can still perk up for ’showtime’ and hold a “normal” conversation- as if everything is fine. The second he’s off the phone, he’s back to being completely out of it again. This is especially true when talking with friends, extended family members or doctors. It’s like the pressure is on and he’s able to perform rather perfectly giving others the sense that’s doing so well and nothing is wrong. But, when he’s around his immediate family, everything is wrong and no one sees or hears the reality of Dad’s health. I guess in a way, that’s probably a good thing as it gives Dad his dignity and allow him to keep up his self-esteem. Don’t get me wrong, he’s not always bad when he talks on the phone or sees a familiar face. It’s just when he’s been having a bad Lewy cycle and it’s been pure hell for Mom, Sister and I, I’m sure others think it can’t be that bad because he sounds so wonderful. This disease is so strange and frustrating.
Hi Holly,
Oh, I can’t agree more. The fluctuations! Dad had a conversation 2 nights ago on the phone with my brother (interstate brother…the one who phones every 6 weeks!), ‘how’s everyone, how’s the boat’…remembered everyone and what they were up to. That night wammy…Lewy and as for the following day…well!
I suppose the only positive way is to look at is…thank goodness for those good days/moments. But it sure is hard to keep up with…can do something…can’t do it…
Please tell your Mum I think she is wonderful and that I have a lot of respect for her. You all have done a great job and rallied together.
hoping all is great with you and hubby
Holly………….truly a wonderful post! You describe so well what I feel inside with this crazy Lewy cycle.
David
Hi All
My Mother has Lewy Body although initially diagnosed over 10 years ago with Parkinson’s. I am fascinated to read about your Dad’s ability to “perform” with extended family and doctors. My extended family do not agree with me as to the extend of my Mother’s Lewy Body symptoms. She chats with others quite well but with my brother and myself, whe is MUCH worse. She is paranoid about our safety and has hallucinations about people trying to “get us” and forcing us to do things (it dominates our conversations). She also thinks she can hear me all the time in a next door room – she thinks that I am talking to a friend and criticising her non stop. This is causing problems between us as she is often angry that “I would talk about her like that…” It is a HORRIBLE and CRUEL illness