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 Hello...this is my first post. 
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Joined: Wed May 08, 2013 9:12 pm
Posts: 2
Post Hello...this is my first post.
:roll:
Hi to everyone. I have been reading this forum for a couple months now and greatly appreciate the fact that I am not alone in dealing with a loved one with this terrible disease. My mother is 69 and was diagnosed with LBD in April of this year. She was first diagnosed with Parkinson's but I questioned that from the very beginning. I knew it had to be something more. I am her primary/only caregiver. I have three siblings but no one can offer any assistance.....it's complicated. Every day brings new challenges and frustrations. Spending time here has enabled me to cope with circumstances that would seem so outrageous to others. You have been my support group and without you I don't think I could get through each day. (Sometimes each minute.) One of the hardest things for me is that when I am in the throws of any given situation with my mother, I find myself forgetting she is sick. Then I feel terrible later when I have had the chance to evaluate what happened. At the time it just feels like she is being mean, selfish, or hateful to me deliberately, but I have read so many of you post similar scenarios of your own. I guess I'm just so grateful to have found you and want everyone to know how much your post give me the strength I need to care for my mother who is difficult on her best day. I do love her very much and will do the best I can for her until the day comes that she requires more than I can give. May God Bless You All.......Cindy

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Tue Sep 10, 2013 3:11 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello...this is my first post.
A warm welcome, Cindy! And God bless you, too!

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Sep 10, 2013 10:21 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 310
Post Re: Hello...this is my first post.
Welcome to the forum Cindy! Glad to hear you've been reading and now maybe you'll post some of your experiences and share what happens with others here too! I remember feeling very bad after one incident with my mother - and still do! Mom wanted to buy absolutely everything at the grocery store and I just got mad at her and told her "no, put it back." Needless to say, our voices escalated and I still remember the look my mother gave me. So, don't worry, we all expect our mother's to be the way they always were and, especially when the symptoms keep coming and going, it's very hard to remember it's the LBD talking!

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


Thu Sep 12, 2013 9:04 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello...this is my first post.
Cindy,
Welcome and I do hope that the forums can be a help to you !

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Irene Selak


Sun Sep 15, 2013 8:24 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hello...this is my first post.
Hi Cindy, and welcome to the forum. I think it is especially hard for CGs who are living with their LO who has this disease because it's there all the time surrounding you. Can you get some breaks away from the house, have someone come in at least an hour or two a few times a week? I used to have to remind myself "it's the disease talking, not dad" but after a half day in the ALF where he was living when things got really bad, I'd have to leave. I'd try to spend whole days with him when I was in the state where he was living, but some days I just couldn't do it and was thankful that he was in a good, safe place where the paid CGs would take care of him.

I'd suggest you find some ways to get out and take care of yourself on a regular basis. Stress makes us sick, and I'm sure you don't want to have that happen. Sending you positive thoughts and wishes for a peaceful day, 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.


Wed Oct 02, 2013 7:36 am
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Joined: Mon Sep 30, 2013 11:11 pm
Posts: 1
Location: Englang uk
Post Re: Hello...this is my first post.
Hi im gillian im in the uk glad i found this forum im at my wits end with my muched loved husband of 50yrs he is not the man i married and i cant come to terms with this terrible disease hes forever lying to people about me and also calling me a liar i cant get over that he thinks hes ok and theres nothing wrong with him he is deteriating quite alot of late in being more forgetful and wanting to cause arguments i dont know where to turn xanybody help please x


Wed Oct 02, 2013 9:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3436
Location: Vermont
Post Re: Hello...this is my first post.
Hi Gillian - I'd recommend you make your own new posting. If you have a particular question, perhaps there will be a topic area (like "behavioral" or "treatments", etc. where you will be likely to get more responses. You also might want to introduce yourself in the "introductions" area if you wish.

Sometimes new people and ideas get lost in the midst of someone else's postings, especially in the introductions area. Welcome to the forum, glad you found us. 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.


Wed Oct 02, 2013 9:15 pm
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