Mom

[Guest guest]

HI Tony,

Welcome to this group..you will learn alot and get a lot of your questions

answered.

When your Mom believes that you are at her home in AZ, (one of your brothers, I

presume) should just talk to her about what did he say, did you go any where

with him? and then slowly change the subject to another one. The

hallucinations that they see are very real to them, and they talk about them

later the same way because they have made a memory in the brain. I know that

this all seems so strange right now, but you and your brothers will learn from

this group and LBDA.org a whole lot about this disease.

Always feel free to ask questions here...

Joan

>

> Good evening all,

>

> I the oldest of six brothers and our mom has been diagnosed with this

disease. 

> This is new to us and we have all recently come to terms that mom is ill and

> will probably not get better.  We have an appt. with the

> neurologist/psychiatrist next week and we're looking for help on what

questions

> we need to ask.  Even though we have no sisters we've decided that mom will be

> cared for by all of us and do not want a home.  She's not that bad yet but we

> don't see it getting better. 

>

>

> Recently she has been seeing me and my wife in her home in Arizona but we're

in

> Texas.  Any suggestions on how we deal with that other than directly?  I don't

> know but I believe she is having these hallucinations because we mentioned we

> might be going to Arizona for a visit.  She's still very witty and has her

long

> term memory.  I know it's going to get tough but God will see us through it. 

> Any suggestion for me and my brothers are welcomed.

>

> Thank you for listening.

>

>

>

>

>

[Guest guest]

Hello and welcome:)

My mother also has her long term memory and is still witty, she

laughs a lot, even every so often since she broke her arm in the

nursing home and is in pain still after 2 months. Her hallucinations

started seeing kids in her bed and others in her bedroom, or

seeing a snake one time, or thinking my granddaughter was in

bed with her trying to cover her up all night, all this started as

I look back now about 5 years ago. My granddaughter is 6 now.

My Mom was 82 then when all this seemed to be very unusual for

me and my sister whom my Mom lived with both of us at the time

taking turns going to her house and my house, we lived 1 hour

away in Dallas area. My Mom had Open Heart Surgery when she

was like 81, quad bypass, carotid artery, etc. But during these

past 5 yrs. her having these " dreams " , she would wake up and

be normal and not have any of these dreams going on in the daytime,

until my about 6 months prior to my sister passing away which was

my sister passed away, Nov. 09, last year. My Mom was around 85

I would say when her hallucinations got carried away very bad, which

was in the daytime and all the time. She fell and broke her foot

last year and went downhill after that, finally she started walking

out of the house, people were calling her to go, she did this 4 times,

and scared me to death, then she fell a few more times, and I finally

had to take her to the ER, she ended up in the psch hosp. for a week,

then to a nursing home 9 months ago where she lives. She did very

well when they got her medicines going, but still hallucinates daily.

But didn't ever try to leave the home. Then when she fell and

broke her arm 2 months ago, she's gone completely out of it for

the most part because of the severe pain and the pain medicine.

I see her daily at the nursing home and worry about her every day.

In my opinion I do not think nursing homes or this one or the last one

she was in took care of her properly like I would.

You and your brothers are great wanting to take care of your Mom.

I pray she will not get to the point it gets too much. But with all

of you boys you will each get a break. Hope it won't be she has to

do a lot of moving around or changes as LBD patients do not like

change easy at all.

I live in Plano my brother lived in Tucson before he passed away

20 yrs. ago waiting on his 2nd heart transplant, so I'm the only

child left to take care of my dear mother, I'm 58. How old is your

Mom if I may ask? May God be with you and your mother and your

family, and how did you get diagnosed with LBD? Is it heredity did

your doctor tell you? What symptoms do you have and how old are

you if I may ask? I pray I never get this horrible disease. I have

enough health issues as it is. Lupus, and other things.

God God Blessings!

in Texas

In a message dated 2/2/2011 10:45:56 P.M. Central Standard Time,

semperfimac2003@... writes:

[Guest guest]

Tony -

 

Bless you and your brothers for wanting to care for your mom. This disease is

not an easy one to cope with. Joining this group has been a lifesaver for me.

When you have time you should look through the files--they are filled with

useful information. There is one which talks about medications to avoid.

Understanding those will be helpful when you visit with your mother's doctor.

The medications which have my mom the most are Namenda for cognition and

Seroquel for agitation. Since adding Seroquel, her hallucinations have decreased

remarkably.

 

Some things my brother and I have learned:

Good communication is important so we can be on the same page when it comes to

our mom's care.

Consistency and routine are very important for our mom. The slightest change in

her environment can really upset her.

Patience and taking things slowly is key--rushing and impatience can agitate.

 

Ask questions of this group any time--the folks here know just what you are

going through and want to help. Wishing you good days,

 

Katy, daughter to Jill--71, dx 2008

[Guest guest]

tony,

 

katy has brought up a great point  routiines are extremely important,  think

military  routines,  themore scheduled things are the better they are,

 

daddy was xtreemly scheduled,  brunch at 1130, dinner 530,  dessert 830, 

bedtime 1015 after headline news and weather, up at 230 am  potty and snack, up

at 630 poty snack then not agtain till 1100 wash up breakfast at 1130' if we

altered it  he would be off kilter all day long and taht would make him

aggravatede alot.

 

if your brothers are htinking about moving her from one place to another sharing

her care that way , i would highly advise against it.  iether you need to let

her stay at her house adn you all take turns going there to take care of her. or

you pikc one house she lives at na dyou guys rotate care by staying at that

house.  or maybe get her a small apt neaby and you all take turns starying

there with her. so as nmot to disrupt everyones household.  one person should

bre in charge of all medical care/appts and then every one needs to bre updated

and have input. also i would recommend eggtting one fo htose calendars taht take

2 pages for one month and everyoe right comments each day about her status. 

mental, phsycail, falls, bowels issues, appetites, etc, anything that would help

a doctor with her care and help all of you takce care of her.  this way you may

be able to find a trigger that sets off a anxiety or aggressive or sick

episode.  we

disocvered this way that gravy tore up daddys tummy giving him diareaha and

being unable to get ot eht bathroom quick enouh   it was quite messy. 

 

good luck and hugs. sharon

Subject: Re: Mom

To: LBDcaregivers

Date: Thursday, February 3, 2011, 10:06 AM

 

Tony -

 

Bless you and your brothers for wanting to care for your mom. This disease is

not an easy one to cope with. Joining this group has been a lifesaver for me.

When you have time you should look through the files--they are filled with

useful information. There is one which talks about medications to avoid.

Understanding those will be helpful when you visit with your mother's doctor.

The medications which have my mom the most are Namenda for cognition and

Seroquel for agitation. Since adding Seroquel, her hallucinations have decreased

remarkably.

 

Some things my brother and I have learned:

Good communication is important so we can be on the same page when it comes to

our mom's care.

Consistency and routine are very important for our mom. The slightest change in

her environment can really upset her.

Patience and taking things slowly is key--rushing and impatience can agitate.

 

Ask questions of this group any time--the folks here know just what you are

going through and want to help. Wishing you good days,

 

Katy, daughter to Jill--71, dx 2008

[Guest guest]

I have so much going through my mind that I don't even know where to start. My

mom moved in with my husband, daughter and me in December of 2009 with a

diagnosis of mild, senile dementia. I was not satisfied with the diagnosis and

contacted our local council on aging agency who referred me to another doctor at

the Cleveland Clinic. In August of 2010 mom was diagnosed with LBD. There

weren't many changes except that she became very apathetic, no interest in doing

things she normally did, she became incontinent almost over night,

hallucinations, but not often, I could go on and on. But now...2 weeks ago I

went in to check on her and found her on her bedroom floor. She was very

disoriented, didn't know where she was, I called 911. She was in the hospital

for 5 days, nothing broken but very weak and confused. She is now in a rehab

facility and doing great physically but her mental status has declined terribly.

She isn't talking much at all, I am lucky to get one word answers. She is

seeing people that aren't there, she says she is there to visit my grandma,

forgot that she had a son.

Can this disease progress this quickly? I keep telling myself she will be

better mentally when she gets back home with me but what if that is not the

case??

Thanks for listening...feels good to get it all out1

Eileen

[Guest guest]

Eileen-

We found that a hospitalization/ rehab stay really sent my Dad off the deep end

mentally and physically. Against recommendation from the nursing staff, we took

him home with full-time health aides and the minute we got through the door he

was MUCH better. The paranoia and hallucinations were greatly reduced. I know we

were fortunate in this case, but I went from feeling like it was hopeless in the

facility to continuing to have more good time during these twi years since that

incident.

My father experience loss of appetite and disinterest, a low dose of Citalopram

seemed to help that, but I think the nature of LBD is that the patient does

become less interested. He is watchful but not participating as much.

What doctor have you seen? Dad is also seeing physicians at the Cleveland Clinic

(he lives in Willoughby, OH) and has seen Ronan Factora and now Ami Hall.

Have hope that there will be some good days ahead-

Carol daughter of

>

> I have so much going through my mind that I don't even know where to start.

My mom moved in with my husband, daughter and me in December of 2009 with a

diagnosis of mild, senile dementia. I was not satisfied with the diagnosis and

contacted our local council on aging agency who referred me to another doctor at

the Cleveland Clinic. In August of 2010 mom was diagnosed with LBD. There

weren't many changes except that she became very apathetic, no interest in doing

things she normally did, she became incontinent almost over night,

hallucinations, but not often, I could go on and on. But now...2 weeks ago I

went in to check on her and found her on her bedroom floor. She was very

disoriented, didn't know where she was, I called 911. She was in the hospital

for 5 days, nothing broken but very weak and confused. She is now in a rehab

facility and doing great physically but her mental status has declined terribly.

She isn't talking much at all, I am lucky to get one word answers. She is

seeing people that aren't there, she says she is there to visit my grandma,

forgot that she had a son.

> Can this disease progress this quickly? I keep telling myself she will be

better mentally when she gets back home with me but what if that is not the

case??

> Thanks for listening...feels good to get it all out1

>

> Eileen

>