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 Newbie caring for mom 
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Newbie caring for mom
First, I would like to say thank you to everyone for the wealth of info that I have found here.

My mom is 52 years old and we are still seeking a diagnosis. We have seen several dr's all of which have a different idea of what is wrong, but the more I read about LBD, the more I believe this may be what she has.

A not-so-brief history: She is hearing impaired and uses a cochlear implant which helps, but by no means does she hear normally. The reason I mention this is because it complicates the situation. She has suffered from seizures, depression, and a "sleeping disorder" for years. We noticed a decline in her memory about a year ago. About 6 months ago she started having major memory problems as well as visual and auditory hallucinations. She was diagnosed by a psychiatrist as having major depression with psychosis. She was placed inpatient and placed on Lexapro and Resperidal. When she was released she seemed better for a few days and then it came back.....basically it fluctuated day to day. I could always tell when she woke up what kind of day we would have. Within a few weeks she developed a shuffling gait and would fall multiple times per week. On her "bad" days she couldn't dress or bath herself or even use the restroom without assistance. She would "see" and talk to my grandmother who passed away years ago. She also can't distinguish between dreams and reality. We saw a neurologist and she was not a lot of help. She did a CT and ruled out some things and said the shuffling gait could be from the Resperidal, but she wasn't sure. She thought my mom was "too young" to be suffering from dementia. She did however give her Cogentin, which seemed to help some with the gait and restlessness. I asked for a referral to another neuro and he was the first to consider it could be LBD, but he didn't feel comfortable diagnosing her so we now are seeing another neurologist who specializes in Parkinson's/LBD with hopes of finding out what this is. The Dr we are seeing is Dr. Standaert at UAB. He seems to be the right person for my mom to see at this point.

I have two young children (1 and 3) and with my mom needing assistance and supervision almost around the clock, I already feel like I'm at the end of my rope. I'm hoping when we get a proper diagnosis, we will be able to at least have a game plan for the future.

Thank you for reading and for all the information provided. :)

Amanda


Sun Mar 27, 2011 8:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newbie caring for mom
Welcome, Amanda! Sorry you mother, who is much too young for this, has to endure this awful disease. And I rather hope she's not still on Risperdal [risperidone]. It was a disaster for my husband. God bless you for caring enough to get involved in your mother's diagnosis and treatment. It's such a crap shoot at times and we've all taken our LOs to numerous doctors [Derek has seen five neurologists now!] looking for answers and help.

_________________
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 Mar 27, 2011 9:14 pm
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Joined: Wed Mar 02, 2011 1:11 pm
Posts: 27
Location: Michigan
Post Re: Newbie caring for mom
Your mother's symptoms are much like those of my husband, who was her age when he was diagnosed. It took two years of tests and finally a referral to UCLA to get a diagnosis. Having a name for the illness helped. No matter how very precious your little ones are and no matter how much you love your mother, be sure to get some time to yourself--even if it's only 15 minutes when you can step outside and breathe. I don't know if you're religious, but Psalm 139 has always helped me: "You knew every day of my life...." God bless. Debi

_________________
Wife of a 60-year-old LBD patient who was diagnosed in 2003.


Sun Mar 27, 2011 9:19 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Newbie caring for mom
Hugs to you, Amanda, and welcome to the forums. You certainly have a lot on your plate! Does your mom live with you? (You mention how she is when she gets up in the morning.) Whatever the diagnosis turns out to be, you are definitely dealing with many symptoms and behaviors that we see in our loved ones, and perhaps sharing here will be useful to you. Fifty-two is young for LBD, but obviously that doesn't rule it out. Early onset does happen. Has your mom been treated for the sleeping disorder? What was/is the nature of that problem? As you may have read, many with Lewy Body Disease have REM sleep behavior disorder (RBD) which is an acting out of dreams and it often occurs years ahead of dementia. I am very glad that you are taking her to see someone who has experience in PB/LBD. If that is what she has, there are medications that can address behaviors and symptoms. It is a long slow process to get a treatment plan in place, but it can be very worthwhile. There is a lot of trial-and-error involved because there is a huge range of reactions to the drugs and what works wonderfully for one could make symptoms worse in someone else. You need an experienced doctor to guide this process.

Are there other family members who can help with your mom?

Again, welcome to our group. Sorry you are in the situation to be looking for fellow caregivers, but since you are I'm glad you found us!

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


Sun Mar 27, 2011 9:24 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Newbie caring for mom
mockturtle wrote:
Welcome, Amanda! Sorry you mother, who is much too young for this, has to endure this awful disease. And I rather hope she's not still on Risperdal [risperidone]. It was a disaster for my husband. God bless you for caring enough to get involved in your mother's diagnosis and treatment. It's such a crap shoot at times and we've all taken our LOs to numerous doctors [Derek has seen five neurologists now!] looking for answers and help.



Thank you! She is no longer on the Resperdal....the dr actually increased it when the hallucinations got worse, but she got much worse so they discontinued it. She is now on Seroquel, but it honestly doesn't seem to be helping either. Thanks for encouragement!


Sun Mar 27, 2011 9:32 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Newbie caring for mom
Debry wrote:
Your mother's symptoms are much like those of my husband, who was her age when he was diagnosed. It took two years of tests and finally a referral to UCLA to get a diagnosis. Having a name for the illness helped. No matter how very precious your little ones are and no matter how much you love your mother, be sure to get some time to yourself--even if it's only 15 minutes when you can step outside and breathe. I don't know if you're religious, but Psalm 139 has always helped me: "You knew every day of my life...." God bless. Debi



Thank you! I am relying on my faith a lot right now. I can always find comfort there.


Sun Mar 27, 2011 9:34 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: Newbie caring for mom
JeanneG wrote:
Hugs to you, Amanda, and welcome to the forums. You certainly have a lot on your plate! Does your mom live with you? (You mention how she is when she gets up in the morning.) Whatever the diagnosis turns out to be, you are definitely dealing with many symptoms and behaviors that we see in our loved ones, and perhaps sharing here will be useful to you. Fifty-two is young for LBD, but obviously that doesn't rule it out. Early onset does happen. Has your mom been treated for the sleeping disorder? What was/is the nature of that problem? As you may have read, many with Lewy Body Disease have REM sleep behavior disorder (RBD) which is an acting out of dreams and it often occurs years ahead of dementia. I am very glad that you are taking her to see someone who has experience in PB/LBD. If that is what she has, there are medications that can address behaviors and symptoms. It is a long slow process to get a treatment plan in place, but it can be very worthwhile. There is a lot of trial-and-error involved because there is a huge range of reactions to the drugs and what works wonderfully for one could make symptoms worse in someone else. You need an experienced doctor to guide this process.

Are there other family members who can help with your mom?

Again, welcome to our group. Sorry you are in the situation to be looking for fellow caregivers, but since you are I'm glad you found us!



My mom does have an apartment of her own, but has not stayed there for the past 6 months. She stays with me most of the time and with my grandmother when I need a break. We don't feel comfortable leaving her alone most days.....occasionally when she is having a "good" day, I will leave her long enough to take my son to preschool, but that's about it.

For many years she has sleeping problems where she has vivid dreams, talks in her sleep, and "jerks" in her sleep. In the past couple of years she started sleepwalking and would become very confused when she woke up. For example, she would be asleep and wake up making a sandwich. This has only gotten worse over the past few months. She has never had a sleep study to formally diagnosis it. (I'm guessing that is how they would do it)

Thank you for welcome! So glad to have found you all.


Sun Mar 27, 2011 9:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newbie caring for mom
Amanda,
Welcome to the LBDA forums, such a shame that you have a need with a Mom so young but I actually have heard of younger with LBD, I think you are on the right track with getting a firmer DX, doesn't mean these issues won't still be here but its very important !

Please come often, you will find it a welcoming place !

_________________
Irene Selak


Sun Mar 27, 2011 10:14 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Newbie caring for mom
Amanda,

Dr. Standaert at UAB is a top-notch diagnostician, and a very nice person. You can't do better.

Probably UAB has a social worker in the movement disorder clinic who can assist you in putting together a game plan.

By the way, we have several in our local LBD support group who are in their 50s. One gentleman just died last Tuesday who was 59.

Good luck!


Sun Mar 27, 2011 10:52 pm
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Re: Newbie caring for mom
Welcome Amanda, I am so sorry that you like me have had to come to this forum. The people on this forum are so knowledgable and compassionate and they will help you in the difficult days to come. I know that they have already helped me deal with somethings. Now as far as your Mom is concerned, be VERY CAREFULL with Respiredal. It turned my MIL into an unresponsive person, she has since recovered most of her mental cpabilities that she had but has not physically recovered yet. Shhe is still in a rehab facility that is trying to get her to stand on her own and walk again. Good luck and God Bless.


Mon Mar 28, 2011 9:15 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3432
Location: Vermont
Post Re: Newbie caring for mom
Welcome Amanda. This is a great place for a shoulder to cry on, advice on practical matters, whatever you need. All of us have "been there, done that". For some of us, our LO's journey has ended, others are just at the beginning. I'm glad you are a member of this very empathetic community, 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.


Mon Mar 28, 2011 11:10 pm
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