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 Hello, everyone. :) 
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Thank you, Irene.

It's been a long few days. Daddy is currently in the hospital. He went in on Friday the 12th, came out on Monday the 15th, went back in on Tuesday the 16th and he's still in. He went in for a seizure, first ever, on the 12th. He was home for less than 24 hours when he went back in severe personality change, very unusually angry, total disconnect with reality/confusion, a high fever, loss of balance, etc.

We never know from day to day or even from moment to moment where DAD is. Some moments he doesn't even know who we are. Some he does. He is so confused, so very lost inside himself.

This is new territory for us. This new extreme. Some say it's the fever, though it's now down to 100-101 on average. Some say it's the infection (having a tap for menengitis tomorrow), some say it's the Lewy's. I just wish that SOMEONE would stop assuming that it's one or the other. The neuro has his eggs primarily in the Lewy's basket, so to speak. The infectious meds doctor says it's the menengitis basket. He sleeps almost constantly, much more than before. He's forgotten people he's never forgotten and he's just, well...yeah. You get the idea.

Suddenly this seems like a diary. I'm feeling a bit worn down today. 'Nuff said, I suppose.

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Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Sun Aug 21, 2011 11:23 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: Hello, everyone. :)
Sarah- reading your last post just broke my heart. You poor thing! My road hasn't been that bumpy yet, but I do understand what you're going through and I'll keep you and your father in my prayers. Hang in there,
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Sun Aug 21, 2011 2:10 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Hello, everyone. :)
Hi Sarah, I'm so sorry to hear that your poor Dad and all of you are going through this. I know exactly how you feel, as my Dad is in hospital right now and has been there for the last month. If it is any comfort, my Dad was the very same when he had a fever from a UTI, and he also had pneumonia. He was very ill, and became extremely aggitated, kept pulling off his oxgen mask, fighting with the doctors when they were trying to put a line in. THis is not like him at all. He kept seeing and talking to people he said he knew from his younger years, and didn't recognise his grandchildren. He is better now, and knows us all and is much brighter. It sounds like your poor Dad has a similar problem. Something as simple as a UTI is a major issue with LBD patients. Always after a severe downswing, Dad sleeps so much its scary, but I tell myself his body just needs the time to build itself up again. I think its all part of this terrible disease. Don't worry about venting - no matter how long it is. We all need to do it. Hope all is well soon,
Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Sun Aug 21, 2011 2:16 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Ellen, if there's one thing I've learned it's that no day is guaranteed to mirror another. Just as surely as he has bad days he improves and has better days. Right now, the yuck just seems to be winning THIS round. I'll be sure to keep you lifted in prayer, also. Thank you.

Hey, Ger. I don't believe that I mentioned a UTI, so they do sound similar. We were told that he does have a UTI. Still, he's been on MULTIPLE antibiotics for days now. I also neglected to mention that he pulled out a PIC LINE that was based in his upper arm/shoulder area. Mom said it was essentially two feet of IV. Ack! So, yeah, I understand the moods where they seem to work against the doctors, too! Thank you so much for the comfort in knowing I'm not alone, even if it means you've gone through the same or similar.

Blessings. :)

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Sun Aug 21, 2011 3:22 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: Hello, everyone. :)
Hi Sarah - I hope that something can be figured out to keep your dad as comfortable as possible. This is all very unpredictable, sad, frustrating and energy-sapping. Hang in there. BTDT Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Aug 21, 2011 6:31 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Thanks, Lynn. BTDT? It's probably obvious what that stands for, isn't it? :)

He had a better day today. Tomorrow may be procedure day. Soooo..we shall see!

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Sun Aug 21, 2011 8:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3125
Location: Vermont
Post Re: Hello, everyone. :)
been there, done that. Lots of that on this forum, unfortunately....

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Aug 21, 2011 9:59 pm
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Joined: Fri Jul 29, 2011 1:19 am
Posts: 9
Location: Lincoln, DE
Post Re: Hello, everyone. :)
Gotcha! That makes sense. :)

_________________
Don't tell God how big your storm is. Tell the storm how big your God is!

“Do not kiss your children so they will kiss you back but so they will kiss their children, and their children’s children." Noah benShea


Mon Aug 22, 2011 9:53 pm
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