View unanswered posts | View active topics It is currently Thu Oct 23, 2014 10:55 am



Reply to topic  [ 13 posts ] 
 Mother with LBD 
Author Message

Joined: Mon Mar 07, 2011 11:30 pm
Posts: 5
Post Mother with LBD
Hello Everyone,

I am so grateful that I have found this sight where I can access information about LBD from real people who have or are still dealing with a loved one who is suffering from this horrible disease. I guess this is where I tell my story. My mother's health started to decline in 2004. My oldest son was a senior in high school and an athlete. My parents went to all of his football, basketball, and many baseball games until his senior year. My mother just wasn't able to make it to games anymore. She felt tired all the time. She had been diagnosed with mitro valve dysfunction back in the 80's and regularly saw a cardiologist who was not able to help her with her complaints. She told him that she thought something was seriously wrong and he advised her to see a psychiatrist. He was also treating her for high blood pressure at the time as her BP did go up everytime she saw him. It wasn't until 2009 that I took my mother to a neurosurgeon in Wilmington, NC to have a series of MRI's run to determine the extent of damage in her neck where she suffered from bone spurs. The pain had become unbearable and she was contemplating surgery. It was this doctor who advised against the surgery because of my mother's age and encouraged me to find a neurologist who could assess her condition. He told me that she could be a poster child for Parkinson's Disease. That she had the cog wheeling and mask-like expression on her face that were typical of Parkinson's patients. I found a local neurologist in our hometown of Jacksonville, NC, but ended up taking her to a group of neurologists in Greenville, NC because Pitt Memorial is a University teaching hospital and I thought she would have a better chance of receiving more current care. She was diagnosed with Parkinson's and given a prescription for levodopa to help with the tremors. None of the meds seemed to help. She had a couple of falls and then in May of 2010 she suffered a stroke. She was hospitalized at Pitt Memorial for a two week period in June of 2010 as she had a UTI and was completely delusional. Her neurologists then rediagnosed her with Shy Drager's Disease more commonly known as MSA. She spent three weeks in a nursing home receiving Occupational and Physical Therapy and was able to return home in July of 2010. I should mention that my mother is 79 years old and lives with my 81 year old father who by the way is in poor health as well. One of the biggest obstacles we faced during this time were the hallucinations that my mother experienced. She constantly saw people in and around the house. There were circus people in the house, a lady and her two children, marines in the back yard repelling from helicopters into the horse pasture, and the ever presence of a young girl who engaged in sexual activities with my father. This was the most upsetting hallucination of all. My mother's heart was broken and she cried constantly. When she wasn't crying, she was accussing my father of adultery and making his life utterly impossible. My sisters and I would try to convince her that what she was seeing was not real, only a hallucination, but it was so real to her that trying to convince her otherwise was like talking to a brick wall. I wanted these hallucinations to stop. My biggest fear was the fact that she was getting so upset that her BP was going up to as much as 225/112 and I was worried she was going to have a stroke. I joined the Shy-Drager forum, ordered two DVD's, watched them, and was convinced that my mother was incorrectly diagnosed with MSA. Vera James replied to a thread I posted informing me that hallucinations were not a normal side effect of MSA and that I might want to do some research on Lewy Body Demesia. I was shocked when I read about this disease and perplexed as to why her doctors would have misdiagnosed her. It was so apparent to me that she had all of the symptoms of LBD, I had a difficult time understanding how they could diagnose her with MSA. The hallucinations were one of my biggest complaints and they continued to prescribe anti-psychotic meds which did nothing to stop the hallucinations. It was last month when I discovered that my mother had LBD. I shared this with her neurologist and asked to have her taken off of the neuroleptic meds. Her neurologist agreed that it could be LBD after I took her to his office because her condition had worsened. On Feb. 24th I drove my mother to Greenville to an emergency appointment. She was delusional again and her physical condition had deteriorated. She was no longer able to walk without assistance and I suspected another UTI. Her doctor hospitalized her and said he would have a team of neurologists and maybe even some doctors from the psychiatric ward take a look at her. I cautioned the use of anti-psychotic meds. Her first night in the hospital they overdosed her on Haldol and then gave her Benedryl to try to reverse the reaction. My mother has been steadily going downhill since. She was transported yesterday to Britthaven of Jacksonville because her neurologist said there was nothing more they could do. It is a struggle to get her to eat and now I fear that the nurses and assistants at Britthaven won't be able to convince her to eat or take the time to try. My sister and I have to work during the day, but are there in the evenings and will be there on the weekends. It is much better to have her at Britthaven where she is 15 minutes on the other side of town rather than at Pitt Memorial where it is a 1 1/2 hour drive, but I am concerned about the quality of care. Last night I had to change my mother's diaper because she urinated and when I called the nurse's assistant in she said that she had just changed her and she would have to wait until she made it back to her room. She was working her way down the hallway. I told her I would do it myself. I wonder if this is the final stage of this disease and how much longer my mother can last like this. I fear she won't last long if she doesn't start eating, but then I wonder if she is refusing to eat because she wants to hurry the inevitable. This has been by far the most challenging phase in my life and as much as I love my mother, I think I will find peace when she finally goes home to God. Any words of wisdom or advice will be much appreciated. My oldest sister and I have taken on the majority of responsibility since we have one sister who lives out of state and another who just isn't going to be inconvenienced to have to deal with her. Her suggestion has been to put my mother in a nursing home all along. The sister we have who lives out of state has been extremely helpful, coming on the weekends to relieve some of the burden off of us. The one promise that I made to my mother was that I would not put her away in a nursing home somewhere, but we really have no choice. My hope is that she will recover her strength and be able to return home, but realistically it probably won't happen. She did know my name last night which was a plus since she has called me everything from my sister's name, Patricia, to Dorothy or Natalie. Where she came up with those names I'll never know. Last night she warned me to stay away from Ken because he wanted to have sex with me. I don't know a Ken, but according to her she and my dad woke up yesterday and he was in bed with them. I don't think there is anything she could say to me that would shock me as I've heard her say some pretty crazy things in the last year. I've even threatened to wash her mouth out with soap, which I'd really never do, but it has certainly been a roller coaster ride. I would not wish this disease on anyone and pray every day for some miracle which will return my mother to her former self. I apologize for the rambling, and am hopeful that someone out there will be able to offer some useful advice.

Stephanie Peedin


Fri Mar 11, 2011 10:39 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mother with LBD
Welcome, Stephanie. God bless you for caring for your parents. Yes, Lewy is like a roller coaster ride but definitely not fun.

I know how hard it is to have to place your LO in a nursing home as I recently had to do that with my husband. You will find you need to visit often and make it clear to the staff that you and your family expect excellent care and where they might be falling short. There is no perfect nursing home but I find that most staff really want to give good care. Praise and appreciation go a long way to encourage them, too.

Some of us look back at decisions we have made to seek life-saving medical interventions for our LO which, in retrospect, may not have been in their overall best interest. These decisions seem so right at the time and you and your family will need to have an agreement about these issues. I hope your mother had some advanced directives [Living Will, etc.] signed while she was well and appointed someone besides your father as a Health Care Power of Attorney. Comfort/quality of life measures are the most important considerations.

You and your family will surely be in my prayers. We're all in this nightmare together and are here to support each other as best we can. Hugs to you!

_________________
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 Mar 11, 2011 11:06 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Mother with LBD
Stephanie - welcome, and it's so good that you are taking care of your mom, especially when having one or more siblings who won't step up to the plate and do it (most of us have been there!)
Like Pat said, if your mom has an advanced directive that will help you making decisions about not prolonging life with a terrible disease such as LBD. There could be various reasons she isn't eating, and I found out myself (re: my dad) that trying to make someone with a terminal disease eat, is probably for making US feel better, not them. If she isn't eating because she is preparing for end of life, eating will not be doing her any good. Then again, there could be other reasons. My dad barely ate anything in his remaining weeks until the day he died. That day he at a big breakfast and big lunch (for him at that point it was a lot, anyway) and died about an hour after lunch. He hadn't eaten that much in months.....
I send you all the best wishes in keeping up your strength to deal with all you are going through. It is tough but I'm glad you found this site. It's been a lifeline for me while my dad was so ill. Read as many topics as you can on this forum - it will help you understand a lot! 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 Mar 11, 2011 11:35 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Mother with LBD
Stephanie,
Welcome to the LBDA forums, so sorry for your need to seek out such a place but glad you found us, Yes LBD is certainly a Rollercoaster journey, your parents must feel blessed to have caring daughters such as yourselves. As to the many things your mom says or will say she really has no control over what she says. The many thing that she might make mention of such as when she mentioned "Ken", it could have been an event in her life tat only she is aware of so again it is very real to her and you could tell her until you are blue in the face and it won't chan ge her mind, I enourage you to read : http://www.lbda.org/feature/2126/lbd-re ... proach.htm and feel free to print off anything from the LBDA.org to help in your Mom's care.

I hope you find this a place for informatrion and comfort !

_________________
Irene Selak


Fri Mar 11, 2011 11:42 am
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Mother with LBD
Stephanie,

Have the Haldol and Benadryl been removed completely from the approved drugs list?

Many on the ShyDrager Yahoo!Group are caring for loved ones who have LBD, not MSA. In the local support group, the first 6 or so people who died with a clinical diagnosis of MSA and who donated their brains, actually had LBD upon autopsy. I have learned that the MDs are often treating for LBD, even though they don't call it LBD. So, MDs are giving dementia medications even though dementia is an exclusionary criterion for MSA. Your case was definitely not that way.

There are quite a few of you who live in NC. You might see if any are close by each other and start a support group!

Good luck,
Robin

PS. What's your login name on ShyDrager? I don't recall reading your story there.


Fri Mar 11, 2011 12:47 pm
Profile

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Mother with LBD
So sorry you have to be here, but you have definitely come to the right place. I pray for strength for you all on this very difficult journey. As for the things your LO is saying, I find the best way to cope is to just agree, as trying to convince them otherwise just makes them more agitated. Try not to be upset (easier said than done at times, I know) by what she says, as she really doesn't mean it and knows no different. There is wonderful support here and does make the journey easier.God Bless, Ger

_________________
cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Mar 11, 2011 1:59 pm
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Mother with LBD
Welcome. Here you will find people who understand your struggles and who are walking the same path as you. You are quite wonderful to have done so much research yourself and basically have diagnosed your mom yourself. that has been the case with a lot of us. There is certainly a lack of knowledge in the medical community about LBD. Smiles, Nan..PS, my husband, 74, has Parkinsin's Diseas Dementia which his Neurologist/Psychiatrist says is the same disease...it just dit the areas of the brain that control movement first. I am 67 and am his 24/7 caregiver.


Fri Mar 11, 2011 3:22 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Mother with LBD
Welcome, Stephanie. I am so sorry that you had such a rocky road to getting a meaningful diagnosis. I think that is fairly common, but that doesn't make it any less exhauting and frustrating. I hope you find some help and comfort on these forums. You are not alone!
Jeanne

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


Sat Mar 12, 2011 12:28 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Parkinson's vs. LBD
nandel8 wrote:
Parkinson's Disease Dementia which his Neurologist/Psychiatrist says is the same disease...it just hit the areas of the brain that control movement first.
Dale was admitted into hospice with the diagnosis 'Parkinson's.' Under that, they wrote Lewy Body Dementia. Dale had major dementia and hallucinations before any major physical symptoms. He complained about dizziness but had no obvious tremors.

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


Sat Mar 12, 2011 7:28 am
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Mother with LBD
For your Dale it hit the cortical areas of the brain first...for Del it was the brain stem and specifically the Substantia Nigra that first was hit, making his first symptom tremors. For some people the misfolded proteins never move very far and those are cases where the person has Parkinson's but no cognitive decline. Or cognitive issues but no tremoring. I have read numbers from 30% to 50% to 60% may not have cognitive issues. And for some, there are few motor issues, but mainly cognitive/behavioral/psychiatric. For us, we now have them all.

Del was so tired from the long day at the VA yesterday that he was really mean when we got home. I was so glad when bedtime came around. And I was in bed an hour earlier than usual, too.

Smiles, Nan


Sat Mar 12, 2011 12:05 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Mother with LBD
Derek's problems with spatial perception and executive function appeared about the same time as the stiffness and somewhat stooped posture. He also had some problems with short-term memory loss but these were sporadic and fluctuating. There was a lot of hostility, paranoia and aggressive behavior even prior to the other symptoms [as far back as 1999, in fact]. He has always had periods of shaking and thrashing around in his sleep which I never connected to his other issues. He was initially diagnosed with Parkinson's Disease and Dementia. His first neuro admitted it could be LBD and his second neuro [after we had moved] was confident it was LBD.

He never had a tremor until now, when he has, at times, a very fine resting tremor in his left foot which only began about a month or so ago. He doesn't even notice it.

_________________
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.


Sat Mar 12, 2011 12:26 pm
Profile

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Mother with LBD
Interesting isn't it, Pat. It all comes down to where the misfolded protein decides to deposit itself. But all of them, Parkinson's, PDD, pure or Cortical LBD, Diffuse LBD all are caused by the same mis-folded protein. Sounds like Derek had elements of Diffuse LBD and Cortical LBD with an emphasis on the Cortical.

And Del was a very typical PDD. Parkinson's for years (almost 15) and then the migration of the proteins to other parts of the brain. It is a crap shoot. But you only get the cards that are dealt you..not the cards you need.

I am so bummed by what the docs said yesterday. In a way it spurs me to action, but in another sense it brings up all of my old avoidance issues. And, boy, am I good at avoiding.

Smiles to all, Nan


Sat Mar 12, 2011 2:09 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Mother with LBD
I keep wondering what the connection between Dale's long history of sleep walking is to his condition now. When the delusions and hallucinations began in the middle of the night about once a week, I thought it must be some sort of awful sleep walking. I did not originally connect it with the dizziness he had complained about.

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


Sat Mar 12, 2011 3:01 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 13 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr