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my Mom has Lewy Body
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Author:  MEME [ Tue Apr 25, 2017 9:33 pm ]
Post subject:  my Mom has Lewy Body

Hello everyone, my name is Marianne. My Mom was diagnosed in 06. My Dad is still taking care of her in their home. We have had a rough year and it is only April. I live across the yard from my parents and he calls on me a lot. She got violent with him in January and was taken to the hospital. From there she went in to a rehab hospital to try to get her off of some of the meds. She was in that place for 12 days. We were only allowed to visit 1 and 1/2 hours a day. When she was put in the hospital she was pretty much a zombie. Did not speak much at all. But now after getting her off of 3 meds that they felt she no longer needed she is very chatty. We are also finding out that she knows nothing. We did not realize how bad her mind had gotten because she never spoke. Now on a daily basis she ask who my dad is. She sometimes knows me but never knows my children. Today I was with her and she had an accident and she cried and apologized. So I cried too. It is just nice to find a forum where there are people out there going through the same things you are. I say daily, I Hate Dementia. I have not had a mom to talk to in years.

Author:  JeffCobb [ Wed Apr 26, 2017 12:56 pm ]
Post subject:  Re: my Mom has Lewy Body

MEME wrote:
Hello everyone, my name is Marianne. My Mom was diagnosed in 06. My Dad is still taking care of her in their home. We have had a rough year and it is only April. I live across the yard from my parents and he calls on me a lot. She got violent with him in January and was taken to the hospital. From there she went in to a rehab hospital to try to get her off of some of the meds. She was in that place for 12 days. We were only allowed to visit 1 and 1/2 hours a day. When she was put in the hospital she was pretty much a zombie. Did not speak much at all. But now after getting her off of 3 meds that they felt she no longer needed she is very chatty. We are also finding out that she knows nothing. We did not realize how bad her mind had gotten because she never spoke. Now on a daily basis she ask who my dad is. She sometimes knows me but never knows my children. Today I was with her and she had an accident and she cried and apologized. So I cried too. It is just nice to find a forum where there are people out there going through the same things you are. I say daily, I Hate Dementia. I have not had a mom to talk to in years.

Trust me when I tell you dementia sucks from the other side of the wall too. Obviously I am not so far along as your mom but have experienced enough fog to know that when people think I am just zoned-out and off in lala land, I am actually right here sometimes silently screaming to be heard. Its like the other people are on one side of the conceptual stream and I am on the other, with slippery stones my only way back to the world where everyone else is. Those stones represent the steps I must take to bridge the communication gap, each treacherous in its own right and cumulatively sometimes it is beyond my abilities to cross them all to make myself understood. And on other days I just look at those slippery rocks with the idea of screw it, not getting wet today....

This is why I am working so hard to figure out an alternative way of communicating because on those bad days, when I am on the other side of the river, people don't talk to me, they either talk *at* me or around me if that makes any sense, the same way we all talk around the family dog. I think if I had one message to send to the other side of the river it would be that hey, I am still me in here, please just say hi to me. Like you are addressing a real person, again, not like the family dog. And make no mistake, I LOVE my dog(s). They have been a gift from the gods during this journey, so many times when I felt the worst, I also felt sure in my heart that my little buddy understood me and knew I was here. It was chance that I got him but now he is as much life-preserver as he is a buddy. And thats the other thing the little buddy can do, no matter how dense my fog gets meaning how cognitively screwed I am, my dog can find a way to make me laugh when I have absolutely no reason to and when the usual sources of laughter (comedies or even a spoke joke) are beyond my mental reach. Tough to put a price on that. I know this may sound bad but I am sure he will be making me laugh and just plain glad to be alive with all else has failed. It just breaks my heart that I can no longer recall how to play "our game" anymore, and he aint telling.

Author:  MEME [ Wed Apr 26, 2017 4:41 pm ]
Post subject:  Re: my Mom has Lewy Body

So on those days when you are in that fog do you still want people to talk to you even though you never reply? I guess looking back that is what we done to her, said hi and then talked to my dad. like I said though now she talks more but we also have to repeat stuff a lot . Is your memory that bad yet? How long have you had this?

Author:  JeffCobb [ Wed Apr 26, 2017 6:47 pm ]
Post subject:  Re: my Mom has Lewy Body

MEME wrote:
So on those days when you are in that fog do you still want people to talk to you even though you never reply? I guess looking back that is what we done to her, said hi and then talked to my dad. like I said though now she talks more but we also have to repeat stuff a lot . Is your memory that bad yet? How long have you had this?


A deceptively tough and interesting question Meme; when I am in an up phase where the cognitive processes are clicking at their best and I feel engaged in the world around me (at least have some curiosity about it) then yes because while I am still reacting my reactions can seem muted and have been mistaken for extreme indifference when I was simply struggling mightily inside to simply keep up with what is going on around me. And that is another thing that impacts my answer to your question. If the room isn't chaotic and there aren't many/any distractions then yes absolutely try to reach me. But if there is too much chaos (from my perspective), even well-meaning attempts at communication can seem only to add to the pain of the situation and I will just hit a sort of mental fight or flight only its process info vs flee and mental flight is always the easier option. This is how it is as I am now. I can tell you I was diagnosed last August and I am 56 or so but that means less than nothing because we all seem to get diagnosed late. I have had symptoms bad enough to put me on LTD since 2011. Was disabled by the state that year I think. My memory is horrid but worse at times and better at times. For me those times are somewhat predictable (as with the other cognitive swings) but that may not be so for everyone. Have bad expressive aphasia, some apraxia and major cognitive deficits a number of periods per day. Bad EFD.

Author:  MEME [ Wed Apr 26, 2017 9:06 pm ]
Post subject:  Re: my Mom has Lewy Body

My dad has found that it is not a good idea anymore to take her to a viewing at a funeral home. That seems to mess with her the next day. But she does enjoy church still, although I am pretty sure she does not know anyone. She must feel comfortable with them because even though she is really tired she likes going. She recently ask me who I was and then 10 minutes later ask where my husband and kids were, and called them by name. Crazy how that memory thing comes and goes so quickly.

Author:  somdara [ Thu Jun 01, 2017 10:19 am ]
Post subject:  Re: my Mom has Lewy Body

So on those days when you are in that fog do you still want people to talk to you even though you never reply?



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Author:  JeffCobb [ Thu Jun 01, 2017 10:50 am ]
Post subject:  Re: my Mom has Lewy Body

somdara wrote:
So on those days when you are in that fog do you still want people to talk to you even though you never reply?

(* links omitted)



Well first please let me remind that everyone is different and what works for one may be hell for another. Too little is known about this, particularly by me so I am cautious on saying stuff.

That said, in my case its like this: When the fog is small or gone I want to be as engaged in conversation as I can be. When its thick, keeping up my half of a conversation is so hard and frankly tiring that I am good with skipping the effort. Think about it: if the only way you could get to the mailbox was running full-speed every step of the way, some days you would just say to hell with the mail, tomorrow is fine.

And now THAT stated that doesn't mean my wish or desire for human contact has abated a whit. A silence or little talking is fine if there is also the comforting touch on the shoulder, etc.

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