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Joined: Thu Aug 18, 2011 9:24 pm
Posts: 5
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my name is Sara, and i'm 23. Norma, my 86 year old grandma has been fairly recently (a month or so ago by now i guess) been diagnosed with DLB. before the diagnosis i had thought it was Alzheimer's because the way she was acting matched the 10 warning signs (http://www.alz.org/alzheimers_disease_1 ... eimers.asp). the only thing that didn't match Alzheimer's was the fact that she had good, almost normal days, which apparently doesn't happen with Alzeimer's? i hadn't even heard of LBD until recently!

currently my grandma lives alone, and i or my mother visit her twice a day to make sure that she's ok, is taking her medicines, etc. in the evenings i cook for her or get her something from Wendy's (she really loves their chicken sandwiches!). sometimes i spend the night when i have to get up early for work the following morning, but this is met with mixed results. sometimes she's fine with it and sometimes she's upset in some way by it. its not going to be safe for her to live alone much longer, so i'll probably be living with her at some point in the near future, which i'm honestly not looking forward to, for a variety of reasons which are a bit too long to get into for an introduction post.

the medicines she takes for DLB are the Exelon patch and within the past couple of weeks, Paxil. neither of them are really helping her much. she's usually aware that something is wrong with her, but thinks that the patch is causing it and doesn't seem to fully accept the DLB diagnosis. on bad days she thinks me and my mother and the doctors and possibly other shadowy unknown people are conspiring against her with the DLB diagnosis as an excuse take her car away from her and to restrict access to her medications, to trap her in her house and slowly kill her. this paranoia is partly why i don't look forward to moving in with her. she's never been physically violent, but if she's in a particularly bad mood she does get a bit aggressive.


Thu Aug 25, 2011 12:57 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: hello
Welcome, Sarah and sorry for your need to be here. I'd suggest you do a lot of reading here on the forum as well as get any books, pamphlets, and visit other web sites about LBD. You will find a lot of information to help you as your grandmother declines.
You and your mom would be well served to find a dr. who knows a lot about this disease, start looking into various alternatives for your GMs living situation and care.
There is a lot to be done and a lot to learn. And, you will all need a lot of support. I'm glad you found this site and your mom might find it helpful too.
Does your GM have an advanced directive, will and a POA? If not, I'd suggest your mom help her with that before she is no longer able to make clearly thought out decisions.
Good luck and stop back often. 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.


Thu Aug 25, 2011 1:45 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: hello
Sarah,
Welcome to the LBDA forums, Lynn has already given you some great advice and I am sorry you are dealing with this at your young age but family is family, Self education is your best defense and having a Doctor that will partner with the family!

Good LucK!

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Irene Selak


Thu Aug 25, 2011 10:00 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: hello
Welcome Sara! I wonder if you are currently our youngest CG member. I hope you'll feel comfortable with all us old folks. :lol:

What to do with GM as she declines to the point where she can't live alone? That is a very tough decision to make. I suggest you post this question in the Practical Caregiving Tips section, if you'd like to discuss it. There are also existing threads on the topic that might be interesting to you.

Paranoia is indeed very hard to cope with. This is another topic you might bring up, under Behavioral Issues.

Whatever is on your mind as you make this difficult journey, there are probably already threads about it, and you are more than welcome to start a new thread.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Aug 25, 2011 11:22 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: hello
Welcome Sara,
Sorry for your need to be here. There are some really great people here that have a wealth of information and experience. You're probably right about your grandma not being able to live alone for much longer. My mom started showing symptoms that were concerning to me last July (2010) and by October I had to quit my part time job because she couldn't be left alone for four hours a day any longer. In retrospect my mom had been displaying symptoms for several years but it didn't become real apparent that they were all part of LBD until she had shingles. Things have progressed fast in the past year and this website has been a God-send for me!
Ellen

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


Fri Aug 26, 2011 10:12 am
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Joined: Thu Aug 18, 2011 9:24 pm
Posts: 5
Post Re: hello

thanks for the replies!

@LTCVT yes, she has a will and a POA. i don't know about the advanced directive. i do know that grandma got her funeral set up a year or two ago, when she was still fairly normal. my mom mostly takes care of the legal and financial things, whereas i do most of the care giving.

@empritchard i hope i don't have to quit my job to take care of my grandma, especially after how much i looked to get it in the first place. :[ i also have student loans to pay off..


Fri Aug 26, 2011 3:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3113
Location: Vermont
Post Re: hello
Sara - you should weigh all the factors before quitting a job, especially in these economic times. At some point, one CG may not be able to handle her, and you may need to hire others to help or eventually place her in a facility where she'd have 24/7 care when she gets to that point. That level of care can be pretty daunting for most of us, and is eventually impossible to do alone if/when she becomes a 2 - 3 person assist. Many of us on this forum have LOs who got to that point where a 1-person caregiving situation was no longer tenable.
Would your grandmother want you to quit your job if she were able to think clearly? You and your mom have a lot to discuss and make decisions about, and I wish you all the best in a difficult situation. Lynn

_________________
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 26, 2011 7:59 pm
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Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: hello
Sara:

Considering your young age and the beginning of your worklife, whether "career" or otherwise, take care with decisions that might affect your future. Taking time off to take care of GM could negatively affect your ability to manage your work future. I'm not saying you shouldn't, just that you need to plan with your head and not your heart. Many prospective employers don't like any kind of break for personal reasons, even one as compassionate as that. Sounds harsh; life often is.


Fri Aug 26, 2011 11:15 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 187
Location: Portland, Or
Post Re: hello
Sara-
I just wanted to make sure you didn't think I was suggesting that you quit your job. I was just saying that was what I chose to do. There are other options and I don't know your grandmothers financial situation, but there are agencies through which you can hire caregivers, also sometimes there are volunteers available through one 's church or other organizations. There's also help available through Aging & Disabilities for people with limited income. I would just look into all the options that are available to you early so that when she is unable to stay home alone, you're prepared.
Ellen

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


Sat Aug 27, 2011 3:01 pm
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Joined: Thu Aug 18, 2011 9:24 pm
Posts: 5
Post Re: hello

no i have absolutely no intention of quitting my job, i didn't mean to sound that way. i was just wondering out-loud as i had never directly thought about my grandmother getting to a state where i would have to do something that drastic.


Tue Sep 06, 2011 4:54 pm
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