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Joined: Tue Aug 19, 2014 11:45 am
Posts: 4
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My Mom, who is now 81, was diagnosed with dementia about five years ago. She currently sees a geriatric psychiatrist/neurologist who told me he believes she has LBD. Her symptoms are closest to LBD from what I've read. Her progression seems to be following an LBD diagnosis as well. She's been delusional for over a year and had hallucinations at least that long. Her memory has, until very recently, remained pretty much in tact. Since February she has taken a downward spiral. In February she no longer knew what to do in the shower. She became incontinent. Then she lost the ability to dress herself. In the past couple of weeks it's as though she doesn't know how to walk. She still does but must be led and supported. She has started singing randomly; even in the middle of a sentence. She's also having more trouble swallowing some of the bigger pills she takes. A few months ago she had good days and bad days, good moments and bad. Fluctuation was the only thing that was concrete. Lately though we don't see as drastic fluctuations; I guess due to progression. Just today when I was there the caregiver had to help feed her. That's new. She's always been able to feed herself. She understands very little of what is said to her and her speech is severely affected. She is in stage three CKD as well. Otherwise has minimal health issues. Her sister lived to be 92; her brother is now 93. She still knows who we are for the most part. We have caregivers with her 24/7. I'm her POA and health surrogate. My goal has been to keep her in her home as long as possible. I don't think she realizes she's there part of the time but I'm putting off a care facility as long as I can. She's been in hospice care for a couple weeks now. They've been a huge help. My children are 22, 21, 7 and 6. And I have a grandson who will soon be a year old. I have two older sisters but I've handled 99% of everything related to Mom for about two years now. My Daddy passed away last September. I miss him so very much.
I've come here because I enjoyed reading the posts. It's so helpful to hear from others. It's so overwhelming. I feel like my own brain is failing me!
Moms dr told me with her rapid progression over the past six or so months she may not live another year. It's disheartening but I know where's she's going and theres no LBD there!

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Terri. 45 yr old mom of four. My mother was diagnosed with dementia five yrs ago; recently with LBD.


Wed Aug 20, 2014 1:45 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
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So sorry to hear your story, Terri, but you sound like you are doing an awesome job, being there for your mother. It's hard. So many of us have been there - you will find a lot of care and comfort here. My thoughts will be with you.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Aug 22, 2014 1:15 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
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Welcome Terri! I hope you come back as often as you'd like, and it's a good idea to read as much as you can about this disease so you are prepared before the next symptom or issue comes up. 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.


Fri Aug 22, 2014 7:17 am
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Joined: Thu May 15, 2014 10:41 pm
Posts: 170
Location: Phoenix, AZ
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Terri - I'm so glad you are getting good things from the forum! I am one of the forum moderators, so I'd like to officially welcome you, and please come back as often as you need. I feel for you, with small children and a mother with LBD. Please take care of yourself!

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Sun Aug 24, 2014 3:03 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 330
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Welcome Terri! I know how difficult it is to have to deal with kids and seniors at the same time! You definitely have your hands full. Hang in there and come back here for a little support from time to time...

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Wed Aug 27, 2014 10:51 am
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