Re: the dark side of lbd

[Guest guest]

linda and sheila

 

oh boy do i know the evil side of lbd with daddy,  OMG  i cuold share stories

taht would make a salor blush.  my dad even though an alocholic all his life 

gernally expected womaen and opened doors and things like that and for him to

talk to me, hes duaghetr llike he did, wouldmake you cringe and curl your toes

and your striaght hair curl or your culry hair straighten 

 

most of the ime something triggered this, maybe a hjallucianion, maybe an

nifection or pain, maybe just being irriteed. maybve the dogs had a high ptich

annoying bark, as i have noticed that my hearing has changed,k i hear high

pitched things and i dot hae the ability to gee i dont nkow how to say this,

ok  hering too many things

lets eek  

oh i kmow.

this is how i can explain it,  you are in a crowded room maybe 8 people sitting

around the table talking, and most people acan carry on one coverstaoin with out

problems and maybe even hear neough to keep up with  and input in a 2nd

converstaoin.  and you know that conersation A was about the neighbors dog

barkig all nite, will converatoin B was about uncle willys hernia operatoin. 

well i am noticing now that when in a group like that i hear all the

converstaions but cannot separte them out neough to particpiate as much. so to

me , like instead of conversaton A nad B, i haar,  the nieghbors uncle

willy barkea bout  hernai surgery on his dog last nite.

 

so ihera the conversatoins but am slowly losing the ablity to carry on or put in

input if in a crowed like that.  

anwya my point is that is very frustargin g and cuold be a trigger for a dr

jekyll response.  being constipesd can cause a  mood swing.  , a loss of a

loved one /pet,,  maybe one from teh past but an lbd'er  past is often hte

present in their minds. so htey are relving the death of their first dog rover

and are grieving and wanting rover. or their first love, whey did theat cute boy

joe, not ask me out again , or why did he go arter my best friend rose, what did

she had that i didnt, etc. 

 

just a few thoughts. 

 

please try to remember that the frontal lobe of hte brain, is effected.  and

the frontal lobe is in charge of teh 'love' part of your brain,  hwere becaue

you 'love' someone you wont say sexulay things to your daughter, you wont strip

naked and dance teh can can in the hallway, etc. the things they used to not say

ro do because they 'loved' somoen is gone, and they cant get it back . 

 

i hope this helps, some, i am sorry having bad day concentraing i hope this

makes sense,  if not let me know and i will try to re explin it  hugs. shaorn

 

I am the daughter of Leonard whom was diagnosed in May 2004 and  he died of

complicatons *blood pressure started dropping and wouldn't recover* on Sept 25,

2005. He had bad case of Dr Jekyl/Mr Hyde scenarios. He was showing

hallucinations and falling issues since prior to 1994. We moved in to take care

of him Jan 19, 2003 and still live in his house. And in feb 2009, i have been

diagonosed with 99% probability of lbd. Hoping that a cure or treatment will be

found before it's too late for me.

Subject: Re: Bro Update

To: LBDcaregivers

Date: Friday, May 21, 2010, 8:33 AM

 

,

I'm so sorry to hear about your mother being injured and hearing how the LBD is

progressing. Is the NH getting some pain relief for her? Our LBD LOs are like

children when it comes to being upset - by pain or illness. They can't tell us

what is wrong and all we see is the wild behaviors. Pain relief is important.

My mom has been unmoving and bedbound for over two years now. With the hospice

nurse's advice I now give Mom Tylenol 500 mg. twice a day every day - on general

principles. She's immobile and has the tremors and rigidity that are so typical

of LBD and deserves some pain relief.

Also, please don't give up on managing the hallucinations. Seroquel has been a

gift from God for my mom. We can't cure LBD and we can't make all the

hallucinations disappear, but for my mother, Seroquel turns the terrifying

hallucinations into pleasant ones.

I'm so sorry you have to the brunt of the your mother's LBD outbursts. When we

have had our sweet mothers in our lives all of our lives and built up these

patterns of behaviors and responses, it is so difficult to now see this Lewy Mom

and it's difficult to suddenly respond in new ways. It's so hard to not be

shocked and angry at the Lewy Mom, but, just keep telling yourself, as the nurse

said, it's the disease talking.

Be strong. Keep on advocating for your mother. You are a wonderful daughter by

caring for and defending your mother.

Sheila in IN

Daughter of Louise, age 87, dx LBD 7/2007

Seroquel 9AM- 25 mg, 3PM- 62.5 mg, 9PM -100 mg.

>

> Hi there Marilyn, its so sad when they take it out on us, the primary

> caregivers! Just this morning, I cried my eyes out totally! After visiting my

> Mom, she refused an exray on her foot the other day, but last night they

> finally talked her into getting one, and it showed her foot is still

> fractured!!!! So this morning, I brought her favorite candy up there, and

first

> thing I went in her room and she cussed me out, told me to get the hell away

> from her, get the hell out of her room, and not to ever see her ever

> again!! My heart was broken, I was in shock! She told me she wanted to die and

> was going to kill herself, and she was refusing all her pills. She said

> her knee pain was so bad she wanted to die and I said, I can get you a pain

> pill, NO, get the hell out of here is what she told me. I left and I cried

> all the way down the hall to the nurse. And of course, I know this, but

> it still hurts, like nurse said, its NOT YOUR MOM, its her body, she would

> never talk like that to you. Its her dementia getting worse and worse. So

> I know how you feel my dear sweet lady.

>

> My mothers life DID NOT improve in the Nursing Home I put her in 3 weeks

> ago, she's gotten worse or the same with her LBD. It does not get any

> better. In fact, I know it gets worse over time. Its a killer disease, it

> hurts us more than them, but I know she has lost it so many times. She was in

> a psch hosp. for 7 days a month ago from falling in my house, trying to

> leave my house, in fact, leaving my house on 2 occasions, calling 911 saying

> someone was killing her in the hosue, twice, and I almost had a nervous

> breakdown. So her qualify of life is no better at the N.H., she has bad bad

> bad days of still hallucinating, that will never go away. Just like here at

> home. I want to move her to a nice nice N.H., as this one is old, and

> stinky, etc., but I KNOW IN MY MIND, that no matter where I move her, her mind

> will always be LEWY BODY DEMENTIA till she passes away, and she will not

> know the difference.

>

> The safety part is the best part of us moving them to a place that is

> secure so they don't get hurt, so they don't run away and get killed in the

> streets. So that part, I feel so much better about, she's getting taken care

> of or watched. She is in a N.H. that has WANDER GUARD. As LBD patients

> wander and hallucinate all the time.

>

> That is a good idea to get guardianship over your brother, I had to over

> my mother, because they do not know what they are doing.

>

> She could not handle taking care of her x husband at all. If you can't,

> no one can. At least at a N.H. or secure place, they will have 24 hour

> nurses/aides making sure he will be watched and cared for. The caregiver, like

> I am/was, they take it out on us the most I believe. So if she wants the

> money from him, she will have a nervous breakdown before its over.

>

> My mother is 86 yrs. old, I don't know how old your brother is, or what

> stage he is in his LBD, I know my Mom has gone downhill all the way in the

> last months and I don't know if your brother has or not.

>

> Good luck and God bless to you Marilyn,

> in Texas

>

>

> In a message dated 5/19/2010 9:36:12 P.M. Central Daylight Time,

> marilynkcgw@... writes:

>

>

>

>

> I finally took the big step and had Medical POA activated today for my

> brother. His periods of healthy behavior are becoming less and less. Like most

> of us primary care givers, I am the person he targets and I understand

> that. But he is added swearing, name calling and threatening to physically

harm

> me now. He unplugged

> and tossed out his expensive locked, timed and alarmed medication

> dispenser and the digital day, date, year, time, clock. Luckily my husband was

able

> to go over and retrive it. He is totally off his Aricept now and refuses

> any medication. I both hate yet look forward to him going into Assisted

> Living for his safety and improved quality of life, with us still being

> advocates for him. However if he chooses not to make the move I will have to

go to

> court for guardianship to basically protect him from himself.

>

> His Xwife, of which he has no memory of the abusive person she was through

> out their marriage, has re-entered the picture. She calls him and makes

> random visits. It has been five years since their divorce and never once

> prior to his dementia has he ever mentioned moving back to her house and

> renting a room. All of a sudden after contact from her and her 30 year old son

he

> is talking about moving back to the house and renting a room from her. She

> is driven by

> greed and I truly believes has a cash register where ones heart should be.

> Our family feared for his safety while he was married and in his current

> state as a venerable senior he is a walking victim for someone like her.

>

> We have a meeting with an Elder Law attorney and hope to get some answers

> about giving him the least restrictive options to live but making sure he

> is safe and healthy as possible. I don't want to take away his freedom, I

> just want him to have the quality of life that

> he has always deserved and he doesn't have that living independently.

>

> Thank you for listening.

> Marilyn from Wisconsin

>

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