Re: Introducing myself and my dad

[Guest guest]

Ida, your father sounds like a very classic case of LBD. I am sorry to have to

welcome you to our club, but here you will find others who are experiencing what

you are.

My husband, 74, was been diagnosed with Parkinson's Disease in 1998. He had

decreasing loss of interest in things, but when he had his second Deep Brain

Stimulator implant placed in 2005 he experienced a delirium coming out of the

anesthetic. From that time on, it has been an increasingly rocky ride. I first

heard the term Lewy Body Dementia in 2008 although the behaviors had been there

for a couple of years. He has very advanced Parkinson's Diseas Dementia (same

as LBD< but the movement disorder predates the cognitive by over a year).

I would also suggest that you participate in the Lewy Boday Dementia Association

website and specifically look for their forum which has a LOT if good

information on it.

Smiles, Nan

>

> My father beat prostate cancer by 2001, after chemo and radiation –no surgery.

Shortly thereafter, however, he did have surgery for a hernia. Since then,

ever-so-gradually, his short term memory experienced glitches that my mom

noticed, more and more.

>

> Fast forward to 2008, when my parents moved to within 20 miles of my husband

and me. That move definitely caused an acute elevation of confusion and

forgetfulness for Dad. Soon after that, settled into their home, he became

unable to operate his computer tasks (simple email and news reading).

>

> Now, he suffers from extreme sundowners, with irrationally inaccurate tales of

what he sees, knows, believes or fears throughout the evening. Most stories

include not recognizing their home, their financial state, and even my mom. He

often personalizes TV story settings, thinking he works for crime investigation,

travels around the world, hosts presidents in their home…the list goes on and

on. Yet, other than needing much more sleep than ever, his day time hours are

normal (though still forgetful) and sometimes he will sit and stare with no

visible connection to anything around him.

>

> His hands are in constant tremor, more than ever. His walk is a very slow

shuffle that is as slow as my mother's (with a cane for severe arthritis) and

even slower.

>

> Having had their fill of doctors through the cancer, neither is anxious to

bring a physician into their daily lives again. Dad has had a check-up, MRI,

vascular and heart checks. None showed evidence of obvious culprits. Since

those tests, though symptoms have increased dramatically, even my mother is very

resistant to a doctor visit or medication. (Dad had poor reactions and

responses to anti-anxiety meds during the cancer.)

>

> I write all of this to introduce myself here and get your experienced input as

to whether or not this sounds like LBD or some other dementia. –Mostly I'd just

be curious as to some of your thoughts in viewing these descriptions. His vivid

acting out of dreams and even wakeful hallucinations, plus the tremors, have

made me suspect LBD, though without professional observation and testing, I

doubt I'll ever know till we are way on down the line… Thanks for

listening/reading. -Ida

>

[Guest guest]

My father has had similar problems. He has " good " periods and some pretty awful

" episodes. " He definitely had problems with the computer. He would watch TV

and either think he was in the TV program or the people in the program would

come into the house. He would get lost in our house. Many years ago he had the

vivid dreams where he would jump out of bed and act them out, knocking over

furniture. He was diagnosed with Lewy Body Dementia just recently by a

neurologist. He sleeps excessively during the day and has had many falls. When

in the hospital for tests to see what was wrong with him, he actually fell and

damaged his eye to the point of requiring two surgeries and losing sight in it.

It sounds very familiar to your dad. Most of my father's worst times involved

taking medicines like antibiotics that you wouldn't think would cause anyone

problems. I find that any chanages in environment such as your parents move can

set him off also... trigerring confusion and falls. My father also had radiation

for prostate cancer in 2009. He showed symptoms before then though. My father

seemed to take a real nose dive after my mother died in November 2009. The

Neurologist who saw him shortly after that (before LBD diagnosis) suggested

decompensating dementia... where one spouse actually covers it up or compensates

for the problem and then it becomes very obvious when they are gone. I hope

this helps and I hope things go as smoothly as possible for your family and your

mom. It is a tough situation.

Toni

>

> My father beat prostate cancer by 2001, after chemo and radiation –no surgery.

Shortly thereafter, however, he did have surgery for a hernia. Since then,

ever-so-gradually, his short term memory experienced glitches that my mom

noticed, more and more.

>

> Fast forward to 2008, when my parents moved to within 20 miles of my husband

and me. That move definitely caused an acute elevation of confusion and

forgetfulness for Dad. Soon after that, settled into their home, he became

unable to operate his computer tasks (simple email and news reading).

>

> Now, he suffers from extreme sundowners, with irrationally inaccurate tales of

what he sees, knows, believes or fears throughout the evening. Most stories

include not recognizing their home, their financial state, and even my mom. He

often personalizes TV story settings, thinking he works for crime investigation,

travels around the world, hosts presidents in their home…the list goes on and

on. Yet, other than needing much more sleep than ever, his day time hours are

normal (though still forgetful) and sometimes he will sit and stare with no

visible connection to anything around him.

>

> His hands are in constant tremor, more than ever. His walk is a very slow

shuffle that is as slow as my mother's (with a cane for severe arthritis) and

even slower.

>

> Having had their fill of doctors through the cancer, neither is anxious to

bring a physician into their daily lives again. Dad has had a check-up, MRI,

vascular and heart checks. None showed evidence of obvious culprits. Since

those tests, though symptoms have increased dramatically, even my mother is very

resistant to a doctor visit or medication. (Dad had poor reactions and

responses to anti-anxiety meds during the cancer.)

>

> I write all of this to introduce myself here and get your experienced input as

to whether or not this sounds like LBD or some other dementia. –Mostly I'd just

be curious as to some of your thoughts in viewing these descriptions. His vivid

acting out of dreams and even wakeful hallucinations, plus the tremors, have

made me suspect LBD, though without professional observation and testing, I

doubt I'll ever know till we are way on down the line… Thanks for

listening/reading. -Ida

>

[Guest guest]

Hello Ida,

Your description of your dad sounds very  much like LBD to me.  My husband

had a

very bad reaction to the anesthesia from a Hernia operation and became

delusional thinking I was a spy. My husband also seemd to start to show signs of

LBD after back surgery and anesthesia.  He was diagnosed with LBD in Oct. 2003

a

year after his back surgery. and recently passed away in January.  People can

have bad reactions to certain types of anesthesia before LBD and during LBD. I

believe there is some type of neurological problem to begin with and the

anesthesia triggers the LBD, that is only my opinion. Propofal and Versed are

the two that I know that LBD mostly does well with. People here know the ones

to

use if your dad ever needs surgery again. Unfortunately, I didn't know about the

anesthesia during my husband's surgeries.

 My husband Had REMD. Rapid Eye Movement Disorder or REBD Rapid Eye Behavior

Disorder. He would act out his dreams flailing arms and legs, shouting or

laughing and talking in his sleep. I thought they were nightmares, but have come

to learn that it is a neurological problem and can be something they have

had since childhood. It is now known that people displaying this type

of behavior most likely will have LBD. In my opinion, the anesthesia during my

husband's back surgery triggered the neurological disorder REBD and it became

LBD.

You state that your father could not operate the computer and do tasks such as

e-mail, read news. It is very common with LBD not to be able to operate a remote

control to the TV, Dial a phone number or do their balance book anymore.

Anything with numbers they do not recognize anymore. My husband no longer would

read anymore and he was a teacher and loved to read, and all the obove listed

things with numbers he could no longer use or do. 

 

Your comment: Most stories include not recognizing their home, their financial

state, and even my mom. He often personalizes TV story settings, thinking he

works for crime investigation, travels around the world, hosts presidents in

their home…the list goes on and on.

Your dad not recognizing his home or your mom may have Capgras Syndrome,

(Pronounced: CapGrah) which is common with LBD. Does your dad think the house

is

not his, but looks like his or your mom is an imposter of herself. It looks like

her, but is not her. My husband would be delusional and say things like; " I will

know it is you if you know where the ..............is. " When we would drive up

to the house, at times he would not get out of the car, because it was not his

house, so I would drive down the street and back to the house and then he would

recognize it as his house.

My husband too would see TV as Reality and act out what he saw and became the

part of whatever he had been watching. If it was sports, he became the coach. If

he saw a fire in the movie, the house was on fire. If it was a War movie, he was

in the military.

I could only put general type movies, Family Movies/Programs, on TV. He didn't

involve himself in those types of movies.

I could go on and on, but your dad definately sounds like he has LBD with the

symptoms you describe.

Go to http://www.lbda.org and look at the criteria to be diagnosed with LBD.

Your dad fits the symptoms.

You have come to the right place for understanding what you are all going

through. You will get a lot of information here.

There are many medications your dad should not be given as they will either be

fatal or cause much confusion and it sounds as if some of your dad's cancer

medications caused reactions. LBD is very sensitive to medications.

You will find a lot of answers to your questions in the Links and Files on this

site and from the group.

Jan Colello

San Francisco Bay Area, California

Husband, Jim, dx w/LBD Oct. 2003

Deceased, January 22, 2011

________________________________

 

My father beat prostate cancer by 2001, after chemo and radiation –no surgery.

Shortly thereafter, however, he did have surgery for a hernia. Since then,

ever-so-gradually, his short term memory experienced glitches that my mom

noticed, more and more.

Fast forward to 2008, when my parents moved to within 20 miles of my husband and

me. That move definitely caused an acute elevation of confusion and

forgetfulness for Dad. Soon after that, settled into their home, he became

unable to operate his computer tasks (simple email and news reading).

Now, he suffers from extreme sundowners, with irrationally inaccurate tales of

what he sees, knows, believes or fears throughout the evening. Most stories

include not recognizing their home, their financial state, and even my mom. He

often personalizes TV story settings, thinking he works for crime investigation,

travels around the world, hosts presidents in their home…the list goes on and

on. Yet, other than needing much more sleep than ever, his day time hours are

normal (though still forgetful) and sometimes he will sit and stare with no

visible connection to anything around him.

His hands are in constant tremor, more than ever. His walk is a very slow

shuffle that is as slow as my mother's (with a cane for severe arthritis) and

even slower.

Having had their fill of doctors through the cancer, neither is anxious to bring

a physician into their daily lives again. Dad has had a check-up, MRI, vascular

and heart checks. None showed evidence of obvious culprits. Since those tests,

though symptoms have increased dramatically, even my mother is very resistant to

a doctor visit or medication. (Dad had poor reactions and responses to

anti-anxiety meds during the cancer.)

I write all of this to introduce myself here and get your experienced input as

to whether or not this sounds like LBD or some other dementia. –Mostly I'd

just

be curious as to some of your thoughts in viewing these descriptions. His vivid

acting out of dreams and even wakeful hallucinations, plus the tremors, have

made me suspect LBD, though without professional observation and testing, I

doubt I'll ever know till we are way on down the line… Thanks for

listening/reading. -Ida

[Guest guest]

Hi Ida,

It does sound like it could be lbd with parkinson's- but there are other

things it could be as well and it's really important to rule them out. I

don't blame your folks for having their fill of doctors, however, it's

important to get a diagnosis and the sooner the better. For instance, if

there is an emergency it would be best for your father if in the ER they

know his diagnosis and to be careful with certain drugs. Or the fact there

are some things that could slow it down but they must be started sooner than

later.

There isn't a cure so it is not like trying to beat cancer and getting on

that mill - it's a matter of finding a doctor(s) who are up on the disease

and it's nuances and treatments and managing your father's symptoms the best

possible way.

Is your mother doing the caregiving or does she have help? If you know

what is possibly in store with what your father has, it will help with

planning for how to care for him and believe me you cannot do this soon

enough, especially with LBD with parkinson's. For the reason of long

range care planning I would say you would all be better off getting a

diagnosis right away and also, because some things can help slow the

progression and make quality of life better that would be another really

good and urgent reason to pursue a diagnosis now.

Look for a good neurologist experienced with dementias/parkinson's for a

diagnosis and they will either manage your father's illness directly or

consult/advise his primary doctor in doing so. It doesn't take a lot of

tests and such for a diagnosis - some scans, blood work usually, office

visit or two seems to be the usual. If family goes along to provide input

and observations of his behaviors and how things have progressed and when

things were first noticed and so on it will greatly help the neurologist in

making a diagnosis. So many times family is not involved in helping put the

history together - it really does help a lot. If you're anywhere near San

Francisco I'd suggest the Memory and Aging Clinic at UCSF - it takes about

2-3 months but well worth the wait. There are other similar places around

the country and if you don't live near one, just finding a neurologist as

mentioned above will likely be sufficient.

There are legal papers to be filled out as well and best do it before it's

too late, if they haven't been done yet. Someone needs to be power of

attorney and medical power of attorney (one with a back up is what we have

for my mother in law - my husband is primary and I'm secondary because he

works 100 miles from home 10 hours a day, gone from 5am to 6pm).

I'm so sorry that you and your family are having to deal with this and I

hope it isn't LBD.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Ida McManis-Angel Covers

Sent: Friday, March 18, 2011 2:50 PM

To: LBDcaregivers

Subject: Introducing myself and my dad

My father beat prostate cancer by 2001, after chemo and radiation -no

surgery. Shortly thereafter, however, he did have surgery for a hernia.

Since then, ever-so-gradually, his short term memory experienced glitches

that my mom noticed, more and more.

Fast forward to 2008, when my parents moved to within 20 miles of my husband

and me. That move definitely caused an acute elevation of confusion and

forgetfulness for Dad. Soon after that, settled into their home, he became

unable to operate his computer tasks (simple email and news reading).

Now, he suffers from extreme sundowners, with irrationally inaccurate tales

of what he sees, knows, believes or fears throughout the evening. Most

stories include not recognizing their home, their financial state, and even

my mom. He often personalizes TV story settings, thinking he works for crime

investigation, travels around the world, hosts presidents in their home.the

list goes on and on. Yet, other than needing much more sleep than ever, his

day time hours are normal (though still forgetful) and sometimes he will sit

and stare with no visible connection to anything around him.

His hands are in constant tremor, more than ever. His walk is a very slow

shuffle that is as slow as my mother's (with a cane for severe arthritis)

and even slower.

Having had their fill of doctors through the cancer, neither is anxious to

bring a physician into their daily lives again. Dad has had a check-up, MRI,

vascular and heart checks. None showed evidence of obvious culprits. Since

those tests, though symptoms have increased dramatically, even my mother is

very resistant to a doctor visit or medication. (Dad had poor reactions and

responses to anti-anxiety meds during the cancer.)

I write all of this to introduce myself here and get your experienced input

as to whether or not this sounds like LBD or some other dementia. -Mostly

I'd just be curious as to some of your thoughts in viewing these

descriptions. His vivid acting out of dreams and even wakeful

hallucinations, plus the tremors, have made me suspect LBD, though without

professional observation and testing, I doubt I'll ever know till we are way

on down the line. Thanks for listening/reading. -Ida

[Guest guest]

Dear Ida,

Welcome to the group. I think you have found the right place - it sounds like

your Dad does have LBD. There are some things to do to slow the progression of

this awful disease, like taking aricept and namenda. I have learned so much

from the giving and caring members of this group; they have helped to make my

Mom's journey easier for me to understand and deal with.

It would be great if you could get your Dad to a neurologist or a geriatric

psychiatrist, who could do an evaluation and start him on some of the

medications.

Where do you live? There are some great support groups in various parts of the

country - they are another wonderful resource.

Again, a warm welcome!

Helene

Mom 77 years old, about 11 years with LBD

living at home, with constant care in the Bronx, New York

>

> My father beat prostate cancer by 2001, after chemo and radiation –no surgery.

Shortly thereafter, however, he did have surgery for a hernia. Since then,

ever-so-gradually, his short term memory experienced glitches that my mom

noticed, more and more.

>

> Fast forward to 2008, when my parents moved to within 20 miles of my husband

and me. That move definitely caused an acute elevation of confusion and

forgetfulness for Dad. Soon after that, settled into their home, he became

unable to operate his computer tasks (simple email and news reading).

>

> Now, he suffers from extreme sundowners, with irrationally inaccurate tales of

what he sees, knows, believes or fears throughout the evening. Most stories

include not recognizing their home, their financial state, and even my mom. He

often personalizes TV story settings, thinking he works for crime investigation,

travels around the world, hosts presidents in their home…the list goes on and

on. Yet, other than needing much more sleep than ever, his day time hours are

normal (though still forgetful) and sometimes he will sit and stare with no

visible connection to anything around him.

>

> His hands are in constant tremor, more than ever. His walk is a very slow

shuffle that is as slow as my mother's (with a cane for severe arthritis) and

even slower.

>

> Having had their fill of doctors through the cancer, neither is anxious to

bring a physician into their daily lives again. Dad has had a check-up, MRI,

vascular and heart checks. None showed evidence of obvious culprits. Since

those tests, though symptoms have increased dramatically, even my mother is very

resistant to a doctor visit or medication. (Dad had poor reactions and

responses to anti-anxiety meds during the cancer.)

>

> I write all of this to introduce myself here and get your experienced input as

to whether or not this sounds like LBD or some other dementia. –Mostly I'd just

be curious as to some of your thoughts in viewing these descriptions. His vivid

acting out of dreams and even wakeful hallucinations, plus the tremors, have

made me suspect LBD, though without professional observation and testing, I

doubt I'll ever know till we are way on down the line… Thanks for

listening/reading. -Ida

>

[Guest guest]

Thanks everyone for your input and good advice.

The neurological or psych exam is VERY expensive, so that's a tough sell, but I

will try to move in that direction. I have a couple of other paths to pursue at

the same time.

Mom and Dad have created a simple trust for their quite meager estate. At the

time, they were each other's trustees, of course, and I am the next in line. I

am also a signatory on their bank account. Lately, we have discussed the

possible wisdom of putting my name on the title deed to their home. I've

hesitated now, wondering if I will somehow void the trust document. It still

may be the wisest, simplest thing. -Wanting to make things as smooth as

possible if something suddenly happens to my mom -and dad is the one left

dealing with things. (They both will turn 80 this June.) We'd have to get him

out of their quickly, as he would not do well alone at all, of course.

Also, I have durable power of attorney for both, but should get the medical. I

also realize that though I am authorized to be privy to everything in regards to

my mother's medical account or record, I don't think we signed that same form

for my dad. I definitely need to do that and next maybe schedule a consult with

his primary care physician to start.

So much to consider...it overwhelms me at times. My husband and I work hard not

to obsess over it, as he was recently made guardian of his mother (and her

estate) who is in mid-stage dementia as well.

Thanks again, each of you, for your comments and support! -Ida

[Guest guest]

My mother signed her property over to us kids, and, maintained a life

estate, which means she can stay until she no longer can stay. It

works well in some cases. You might research it in your state.

Bonnie

[Guest guest]

Hi Ida,

It is important that you have a power of attorney for both financial purposes

and medical purposes.

As far as the home and the trust...

Who is the successor trustee on the trust? If you are named as successor

trustee, then if the doctors declare one of your parents as incompetent, then

you would be able to make changes such as selling the house, controlling the

other back accounts etc. If the funds are low, you can also get a reverse

mortgage that will allow your parents to stay in there home and then after their

deaths, the Reverse Mortgage company would be entitled to what they advanced as

well as some interest.

Please go to see an attorney. Most attorneys give you a free consultation and

they can steer you in the right direction.

>

>

>

>

>

>

>

> Thanks everyone for your input and good advice.

>

> The neurological or psych exam is VERY expensive, so that's a tough sell, but

I will try to move in that direction. I have a couple of other paths to pursue

at the same time.

>

> Mom and Dad have created a simple trust for their quite meager estate. At the

time, they were each other's trustees, of course, and I am the next in line. I

am also a signatory on their bank account. Lately, we have discussed the

possible wisdom of putting my name on the title deed to their home. I've

hesitated now, wondering if I will somehow void the trust document. It still

may be the wisest, simplest thing. -Wanting to make things as smooth as

possible if something suddenly happens to my mom -and dad is the one left

dealing with things. (They both will turn 80 this June.) We'd have to get him

out of their quickly, as he would not do well alone at all, of course.

>

> Also, I have durable power of attorney for both, but should get the medical.

I also realize that though I am authorized to be privy to everything in regards

to my mother's medical account or record, I don't think we signed that same form

for my dad. I definitely need to do that and next maybe schedule a consult with

his primary care physician to start.

>

> So much to consider...it overwhelms me at times. My husband and I work hard

not to obsess over it, as he was recently made guardian of his mother (and her

estate) who is in mid-stage dementia as well.

>

> Thanks again, each of you, for your comments and support! -Ida

>