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Joined: Fri Aug 06, 2010 12:54 am
Posts: 1
Post Hello
I'm the sole caregiver for my mom who moved in with me a little over two years ago. She turned 90 in April of this year. Her problems started with a major UTI and during rehab they noticed issues with her gait, mostly freezing up when she walked, so she was sent to a neurologist who specializes in Parkinson's. Sadly, he has pretty much ignored her dementia issues except to prescribe the exelon patch (used with Alzheimer's). When her vivid hallucinations began last summer, I began doing more research on types of dementia and found out about LBD. Mom has not been "officially" diagnosed but I did have a second doctor say this is probably what it is when I described all her symptoms. It's tough going as I'm sure you all know - from minute to minute I don't know what to expect and it's finally taking a toll on me. I have been lucky enough in the past month to find someone who can come in three days a week for a few hours so that I can get out to run errands - still can't bring myself to socialize - I feel guilty leaving her at home. Anyways, as with all of you, I could probably write a book but I just wanted to say Hi and Thank You for being here.


Fri Aug 06, 2010 1:11 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello
Good Morning,
Welcome to the LBDA forums sorry for your need but glad you found us, Did the hallucinations lessen with the Exelon patch , many have said that it helped in that area. Please don't feel guilty with leaving when you need to run errands, these are things you need to do and it gives you some alone time . Post as you need to , there is always someone around!

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Irene Selak


Fri Aug 06, 2010 8:17 am
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Joined: Fri Jul 16, 2010 1:11 pm
Posts: 16
Location: Oakville, Ontario
Post Re: Hello
Hello,

Like everyone here I am sorry for the reason for it but you are in the right place for support and answers to questions. I too am the only caregiver for my father and I haven't been out for anything other than work and groceries in almost a year. It takes its toll. Try to find some time for yourself and ask anyone and everyone to help you. You will be surpirsed at who might help if they are asked. My ex husband slept on the couch last night and got up with my father for me so I could get some rest. I asked and he helped :-)

Good luck!
Allison

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Allison - caregiver to Donald (father) age 76 diagnosed with LBD July 09.


Fri Aug 06, 2010 8:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hello
I am so sorry you have to deal with this awful disease but am so glad you found this forum! Welcome, and God bless you! Don't feel guilty about enjoying some time 'off'. It took me a while before I was able to arrange a couple of mornings a week by hiring a caregiver from a local agency. It saved my sanity. Even if I only go to Walmart and stop at Starbucks for a coffee I feel free for a short time and it's delicious. Sometimes I go hiking with a neighbor and that's even better. You deserve this time!!!

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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.


Fri Aug 06, 2010 9:28 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Hello
Hi and welcome from me too, Serenity. 2 things people keep telling me that I have to keep reminding myself:
1. You deserve to be happy and healthy
2. Would your parent want you suffering and feeling guilty?
I have to remind myself of those all the time! I have an overly-developed sense of guilt, and sometimes too much a sense of responsibility (or am I just a control freak?), both of which get me down and stressed. So this summer I am really trying to concentrate more on taking care of me and trying not to feel guilty about it.
All the best to you in a very stressful time. 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 06, 2010 4:51 pm
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Joined: Mon Nov 23, 2009 12:01 am
Posts: 62
Location: Wake Forest
Post Re: Hello
Hello Serenity,

Welcome and what a wonderful name you have chosen. I too am sorry you are having to cope with all of this, kind words from others who have been there definitely helped me. Yes, it is true that many here could write a book for the select few that may read. This will be a wonderful place of connection for you, please keep coming and asking and reading. You are not alone, we are here for you. PM or email me anytime.

Nancy

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All I am, or can be, I owe to my angel mother. --Abraham Lincoln


Fri Aug 06, 2010 6:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
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yes, a spammer

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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.


Last edited by LTCVT on Tue Sep 28, 2010 7:09 am, edited 1 time in total.



Mon Sep 27, 2010 9:37 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Hello
Amanda, Do post and read often, you'll find a lot of info, many helpful hint, and tons of support, we're all in the same boat and sailing isn't always easy.

Take care, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Sep 27, 2010 9:54 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hello
All,
"Amanda" is a spammer.
Robin


Mon Sep 27, 2010 10:08 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hello
Thank you!

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Irene Selak


Mon Sep 27, 2010 10:17 pm
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