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 An introduction - Starman and his mum 
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Joined: Mon Dec 20, 2010 11:35 am
Posts: 18
Location: Israel
Post An introduction - Starman and his mum
I have just joined the board so I will start with an introduction.

My mother was diagnosed about a month ago with LBD. She is in her late 70s. She has had an interesting life in three continents, has a bachelors degree with distinction, started but never completed nursing, worked in hospital labs and brought up a family of myself and my brother. Today she is a widow (my father passed away from PD a few years back) and she lives alone, more or less next door to us. My brother lives in another country many hours and thousands of dollars flight away.

I am in my mid forties, married with several children - my youngest is at the start of elementary school and my eldest finishing high school. I emigrated to this country in my early twenties.

Over the past few years, she has suffered from two bouts of depression that were successfully treated. In both the depressions she had pseudo-dementia and in the second she experienced hallucinations. She also had panic attacks where she would go all wobbly and fall. Last year, when she had her second depression, she started going to a day center for the elderly and we also got hours of a carer for her from the national insurance. I kept all this going over the last year, even though she got a lot better.

Last summer I started noticing a downhill change in her. Her family doctor was receptive to my hunch but it took a while before I could get anyone really to pay attention as her mini-mental score was still tops and she seemed outwardly OK. The geriatrician we saw at that time really said there was nothing wrong at all. Her psychiatrist even suggested lowering her daily anti-depressant dose because she wasn't depressed anymore. He did however also recommend us to see a neurologist. The result of the lowered dose was that she had a hallucination a couple of weeks later and we upped the dose back up to what it was before.

We went to see a neurologist who specializes in geriatrics in mid November and he suggested possible early LBD (history of halucinations, possible Parkinsonism and slightly lowered mini-mental) and recommended us to do a neuro-psychological evaluation. The neuro-psychologist had more concrete findings (fluctuating cognitive state, history of hallucination, lowered executive and mathematical function, memory still OK) and confirmed the possiblity of LBD.

Over the last month she has had a rapid decline. I have needed to explain to her how to simple things, she has left the telephone off the hook after speaking, she has started sleeping-in in the mornings, having trouble identifying the tablets I prepare for her to take or remembering to take them. I heard from a third party that last week she went out shopping in the local supermarket and needed help to get back - this week I don't think she could get it together to go out on her own like that (thankfully in a way). She is in good mood though kind of bewildered most of the time and in a way it is easier for me knowing that I need to accept her state and that she doesn't have to get better.

I have added hours of her carer to get her up in the mornings and out to the day center and she was just prescribed Exelon patches. Hopefully we will be able to start with them at the beginning of next week.

So far, so good. I intend to be around on the boards here. In order to protect my mum I will be using a pseudonym here and trying not to give away too many hints that might identify me or her.

Starman

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Starman*
Father of five and manager of my mum's life


Thu Dec 23, 2010 3:17 am
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Joined: Mon Dec 13, 2010 12:41 pm
Posts: 1
Location: phoenix, AZ
Post Re: An introduction - Starman and his mum
Hello and welcome to the boards. I hope you find useful information and some comfort that you and your mum are not alone.

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Age 34, daughter of Teresa, diagnosed at age 58 in 2008.


Thu Dec 23, 2010 3:31 am
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: An introduction - Starman and his mum
Welcome, Starman, from across the pond. I'm sorry to know of your mother's declining health. I also hope you will find valuable information here. My husband and I lived on Cyprus at Paphos for almost five years before moving to Florida in 1997. We enjoyed visiting Israel several times.

We are in our mid 70s and I know what your mother is experiencing. I no longer trust my husband to take his own tablets. He has no idea what he takes at this point. Your mother is blessed to have you to care for her.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Thu Dec 23, 2010 5:21 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: An introduction - Starman and his mum
Good Morning Starman,
Welcome to the LBDA forums, sorry for your need but glad you found them. Often when there is a Sudden decline it could point to a possible infection which could cause the hallcinations to be come worse, I hope you are able to find a home here as there are really great members, so post away, I only ask that you try and stay in area's that best fit your question or comment as it generates more help when you need it.

Good luck with your Mom!

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Irene Selak


Thu Dec 23, 2010 8:48 am
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: An introduction - Starman and his mum
Welcome Starman, although it is sad that you have to be here with the rest of us. You will find this a very informative site with caring people. Bernie


Thu Dec 23, 2010 10:10 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: An introduction - Starman and his mum
It is indeed a bittersweet 'welcome'. So sorry you are involved in the nightmare that brings you here but so glad you found us. You will find information, support and encouragement here.

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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.


Thu Dec 23, 2010 10:15 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: An introduction - Starman and his mum
I add my welcome to all the rest. We have all experienced the declines, the loss of function, and for many of us, those were the 'old' days. So here you will find those who have gone before and those who are where you are and soon you will be welcoming others to this board. The members of this forum have saved my sanity.

We had a really good response to Exelon, but I think we started it way too late. The earlier the better. Good luck. Do not feel shy to bring your questions and concedrns here.

Smiles, Nan (I am 67 and am the sole caregiver for my husband Del who is 74)


Thu Dec 23, 2010 11:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: An introduction - Starman and his mum
Welcome Starman. We are all here to support one another and share information. I hope you come here often.
My dad also suffered large declines in short periods of time so I can relate to what's happening with you and your mom. Having someone else monitoring medications sounds like a really important issue right now. I thought my dad was fine taking his own meds, but found out it was all over the place.
It will be very informative for you if you can read as much on this forum as possible. There's a lot of stuff here that may help you before more problems develop. Lynn (daughter of 89 yr. old father who died on 11/30)

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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 Dec 23, 2010 11:47 am
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: An introduction - Starman and his mum
You have found a good home here! My family is also new, and the support has been invaluable. We have progressed years in knowledge over just a few weeks. There is great information here about medications, especially those that can cause Lewy Body patients much difficulty and harm.

Our situation is similar in that my father also had Parkinson disease. It has been especially hard to watch my mother suffer with some of the same issues as my dad. Like your mom, she has also had a rapid decline. She started showing signs of dementia and problems with balance after my dad passed away 2 years ago, although there were signs that something was going with her too. Taking care of him his last few years was a huge stressor for her. She could still walk in June, now however, she is completely confined to the bed or chair. Her parkinsonism may have been exacerbated by some of the medications given to her in the hospital during recovery from cardiac arrest. Read everything you can about treatment of Lewy Body, especially Boeve's Continuum listed here on the resources page for new members

As someone said recently, this disease leaves caretakers feeling like they have been "ground into dust." Thankfully you have some help in caregiving since your brother is not physically close. As you continue to help your mom, remember to take care of yourself as well. Seek out help when you need it!

Bless you and your mom as you move through this life challenge!

Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Thu Dec 23, 2010 4:26 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: An introduction - Starman and his mum
Starman,
Sorry to hear about your mother. I hope the Exelon helps stabilize her cognitive function.
Robin


Thu Dec 23, 2010 4:54 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 716
Location: LA
Post Re: An introduction - Starman and his mum
For every new comer: In the beginning there is so much to learn and in trying to get things "right" you may overlook a biggie but nothing is more important. than this. With any new medicine the secret is to start low and go slow. It can make the difference with whether the med can be tolerated or cause lots of damage. Try to start one med at a time and never allow Haldol to be given for a [probably] Lewy Body loved one. Good luck!

Dorthea

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"See this lady, she's 85, but she's nice"


Fri Dec 24, 2010 5:30 pm
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Joined: Mon Dec 20, 2010 11:35 am
Posts: 18
Location: Israel
Post Re: An introduction - Starman and his mum
Thanks everyone for the welcome and for the wishes. I hope to be around and keep in touch.

BTW, how do I turn on getting email notifications when someone posts on my thread?

Starman

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Starman*
Father of five and manager of my mum's life


Sat Dec 25, 2010 2:18 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: An introduction - Starman and his mum
Hi Starman - that feature no longer exists. It used to before a software upgrade, but now it doesn't, so the next best thing is to get on the forum site and click on the "unread posts" near the top right.
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.


Sat Dec 25, 2010 2:28 pm
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