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 Introduction - Happy to Find You 
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Joined: Sun Jan 02, 2011 11:06 am
Posts: 3
Post Introduction - Happy to Find You
Just a quick intro to the group. My name is Deanna, I'm 54, and I'm the caregiver for my mom who is 89. She moved to New England from California 10 months ago because her doctor didn't feel she was safe living on her own.
About eight years ago my mom told me she saw "little people" just as she was waking up or going to sleep. Since she is legally blind because of macular degeneration, she realized they couldn't be real. She was afraid to tell her doctor, finally did and was brushed off as "dreams". I did some research and discovered Charles Bonnet Syndrome. It fit what she was going through at the time.
She was hospitalized four years ago for pneumonia. Her doctor prescribed Seroquel for her and she was literally off the walls with hallucinations. Before I flew out of Boston, I had the doctor discharge both the Seroquel and Ativan (I worked for a group of doctors at the time and did so at their urging). By the time I got to California, she was oriented but had no memory of being in the hospital. While I sat with her, I noticed that she never seemed to get into deep sleep and was constantly in REM. Lots of talking, opening doors, movement of hands. I mentioned it to her doctor and he said not to worry; it would pass.
I came home after she was rehabbed and released from VNA. I spoke with her daily on the phone and noticed some changes. She is able to cover issues quite well. My brother, who lives 10 miles from her, was not aware of anything. I finally convinced her to tell her doctor what she was going through and she was sent to a neurologist. He started her on 5 mg of Aricept, but there was no diagnosis (my mother has never been the best historian). Her doctor recommended that she no longer live alone but felt she was not ready for a nursing home.
Since she's been here, she had a pacemaker installed, had numerous falls and numerous delusions. She had an excellent evaluation by a psychiatrist who gave her the primary diagnosis of Lewy Body and he increased the Aricept to 10. Her delusions and bad days continued to progress, so I had her evaluated by a neuropsychologist who confirmed the LBD along with Charles Bonnet and capgras. She discharged the Aricept because it may help with memory issues, but apparently can wreak more havoc with her sleep cycle.
Both her primary care and the neuro agree she needs to be in a rest home. I agree as well. These long nights of following her around are wearing, and the discussions to try to clear up what she thinks is real and what is not has become more frustrating. My husband has CLL (chronic lymphocytic leukemia), so he has good days and bad. When they are both on bad days it's extremely difficult. I spent four hours with her this morning going over that I have not lost my job, that we are not homeless, that . Well. You know the drill. It's just been a very rough couple of days.
I wish you all the best and look forward to getting to know you.
Deanna


Sun Jan 16, 2011 12:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Introduction - Happy to Find You
Deanna -

Where in California are you? There are a few support groups in local areas. I run one in Northern California.

Others here have had Charles Bonnet Syndrome diagnoses. Then, when dementia appeared, the diagnosis didn't fit so well any more.

Thanks for sharing that your mom couldn't tolerate Seroquel. Most with LBD can tolerate this med but it's important to keep in mind not everyone can.

Has she been diagnosed with RBD (REM sleep behavior disorder)?

Can you give the name of the psychiatrist whom your mother sees? He sounds good. And how about the neuropsychologist?

Was Aricept replaced by Exelon or Namenda?

You can get some suggestions on care facilities from local support groups, the Alzheimer's Association, and your local California Caregiver Resource Center (cacrc.org).

Robin


Sun Jan 16, 2011 12:45 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Introduction - Happy to Find You
Welcome, Deanna! So sorry you have to join our forum but glad you found us! You will find much information, support and encouragement here. And a little humor from time to time, too. God bless you for caring for your mother. I know how hard it is.

_________________
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.


Sun Jan 16, 2011 12:58 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Introduction - Happy to Find You
Dear Deanna,
Welcome to the LBDA forums sorry for your need but it really is a place to find many answers and help with questions and concerns, I hope you visit often and if you try and post in areas that are most fitting to your need you will get more replies.

Good Luck and caring for your Mom is a selfless act on your part and I commend you for it !

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Irene Selak


Sun Jan 16, 2011 1:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Introduction - Happy to Find You
Welcome Deanna. I encourage you to use this forum as a great source of support and information. If you can spare a few minutes here and there to do some reading, I'd encourage you to read as many of the postings here as you can. You must be exhausted from taking care of both your mom and your husband. My thoughts are with you.
It sounds like you live in NE - I'm in VT - what state are you in? 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.


Sun Jan 16, 2011 1:47 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Introduction - Happy to Find You
Welcome, Deanna! I hope you will find the forum as informative and comforting as I have. None of us want to be dealing with LBD but this forum really helps.

Julianne


Sun Jan 16, 2011 2:05 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Introduction - Happy to Find You
Deanna,
Welcome to an amazing support system. I hope you will find this a resource for all types of information and support. Since mom's diagnosis, this LBDA community has strengthened my reserve and allowed some much needed respite from the dark abyss of dementia. Take care, Katie

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Katie (36) daughter of Marcia (70)


Sun Jan 16, 2011 3:46 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Introduction - Happy to Find You
I want to add my welcome to the rest. You are in the right place to get knowledge and support. Its value is beyond anything I can tell you. Sometimes I feel closer to these people on the forums than I do to the people I see every day. But then, the people here really DO understand... unlike most of the rest of the world.

Bless you for giving of yourself to your mom. You have a double dose with your mom and your husband. Please take care of yourself.

Smiles, Nan


Sun Jan 16, 2011 4:20 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Introduction - Happy to Find You
Me too Nan! You all seem like the only ones who understand anything regarding my current life. Bless you all.

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Katie (36) daughter of Marcia (70)


Sun Jan 16, 2011 4:29 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Introduction - Happy to Find You
I echo all of the welcomes. I too am only in my mid-fifties caring for a parent in their late 80's (mother-in-law). I get no support from anyone in the real family, so have come to rely on the wisdom and experience of those in this forum. Glad you found them, too.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sun Jan 16, 2011 4:55 pm
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Joined: Sun Jan 02, 2011 11:06 am
Posts: 3
Post Re: Introduction - Happy to Find You
Thank you all for the warm welcome - I really need it today, as it has been snowing since early this morning.

I am originally from California - a small town in the Salinas Valley called King City. My mother stayed there until her recent move. I am in New Hampshire (seacoast region).

She has not been to have a sleep study done. I don't know that she could handle it at this point.

One of the most interesting things I've discovered doing research has to do with her humped back. She had several compressed vertebrae fractures, and everyone assumed that since she looks like a question mark, it was a result of that. So many little pieces to put together to come up with a lot of what was going on.

I've been doing so much reading here (as time permits), and I see so many have gone through or are going through the same thing. I learned after my husband's diagnosis, that an online community is very important; someone else is in your shoes, or they're trying them on. We learn so much from experience, as painful as it may be.


Tue Jan 18, 2011 6:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Introduction - Happy to Find You
I found it very helpful to read through the topics and find the posts most meaningful to me when I first joined about a year ago. Then as time allowed I read some of the other topics. Since we can wander a bit and get away from the original topic of postings, you can uncover some great info. where you least expect it.
BTW, are you around the Hampton Beach area? We were supposed to drive to Candia tomorrow but your weather is much worse than ours in Burlington. 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.


Tue Jan 18, 2011 8:49 pm
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Joined: Sun Jan 02, 2011 11:06 am
Posts: 3
Post Re: Introduction - Happy to Find You
Lynn - We're a few miles in from Hampton - Exeter, to be exact. It has been brutal weather wise, with predictions of more to come.


Wed Jan 19, 2011 10:05 am
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