Re: Sue/sharon m

[Guest guest]

sue,

hi there,

i can relate to the falls, my husband i caregave for my dad from 1/03 tiol

his death 9/25/05. my dad started having lbd signs back in 93 but we werent

aware what it was, so we didnt realize it. he started with paranoiod

hallucinations and unexplained falls. dad went to many doctors but only

told them about the falls, and he had cts, xrays and mris but was only told

he had slightly more than normal brain shrinkage for his age. dad dismissed

it as unimportant and never told his mom, sister, his girlfriends, nor me

his only daughter. i lived in tenn at the time and traveled 2 x a year to

see dad, thanksgiving as his birthday was also taht weekend. and fathers

day. during those times i never witnessed any falls, but did see the

paranoid hallucinations. in 94, dad fell apart, due to the falls, and not

understanding what was going on, and he threatened suicide. i first moved

him up to me in nashville got him to go to vandrebilt his major complaint

then was deteriorating visioin. the eye specialiast in vandy couldnt find

anything wrong iwth his eyes, dad went off the deep end and i was unable to

cope with his rages so i sent hiim to his sister in ny she go t him to go

to a psych. who did the worst thing for lbd putting him on all types of

pysch meds. dad hated them and after 2 weeks refused to take them and

insisted on coming back to florida where we went cback to our usual routine

of me visitng on thanksfgivng adn fathers day. dad did well as far as i

could tell until the thanksgiving of 2002 where he asked donnie and i to

move down and take care fo him, he said he was no longer able to do it, and

that was very noticeable to me as his house was filthy, his refrig was full

of food that needed to be discarded. so we moved down in jan 2003. at first

dad was ok by himjslef we could go and do things together, and know dad was

ok at home, except for unexplained falls. as time went on we realized that

it wasnt safe for dad to be home alone, he needed help getting his dinner

he no longer could carry a plate from teh microwave to the table where he

ate. and the falls werre becomingmore frequent. in may 2004, dad had a

severe episode of parkinson shakes, he normally had these which he hadnt

told us only for minutes at a time, but htis spell was ongoing lasting over

2hours before i finally got him to agree to go to hosp. he was in hosp for

3 weeks when a doctor who filled on a weekend said, thathe thought dad had

lbd, i had my laptop with me and looked it up and was astonished to see dad

s symptoms listed right down the line. by this time dad was unable to walk

without a walker and was put into skilled nursing for 2 weeks to learn how

to walk with the walker. dad was put on exelon which helped quite a bit,

and after 1 year namenda was added but due to some major blood pressure

fluctuations, dad was taken off both of them. dad fell and broke his hip

ball, july 4th 05 and had surgery 7/7 that was the start of his final

decline as he had a pulmonary embolyis (blood clot inthe lung) and 2 battles

with aspriattion pnuemonia as well as a uti (urinary track infection( it

was a very long and rough summer for daddy and he did die peacefully,

this is the cliff book version of our life for the past 2 -3 years, i hope

some of htishelps you, i know that it scares you, i dont blame you i was

scared myself seeing and reading about what others were going thru, but you

will be able to handle it, my dad died in a nh which isnt what we wanted but

with the pnuemonia and other issues he had, plus my own severe medical

problmes we had no choice,. dad towards the end had alot of his mind and was

able to communicate alittle and i always explianed waht was going on to hiim

i always treated him like he understood, but i did explain things very

simply and plainly, i knew he had difficultly following complex statements

so i spoke like the old reading books i had in first grade See Dick and

Jane run, run dick run jane, he didnt always understand but i did it

anyway.

if you would like my number to call me, * i am on central time which is one

hour earlier than you, please feel free to call.

\. i dont mind talking to you, that is a cell number but i have

free incoming calls. hugs, sharon m ps, evening is best or around lunch

time thanks sharon

-- Re: Hi , I'd like to introduce myself(LONG)

Hi, Sue.

I am so sorry the LBD, or whatever kind of dementia it is, came on

so suddenly. With my MIL, it has been very gradual.

What occurred to me is the possibility of your having a phone

conversation with one or two of the veteran members here so they

could bring you up to speed on how best to get in control of the

situation.

It sounds like, for instance, you need to find out immediately what

medications they nursing home or hospital has your dad on, and if

they are haldol or ativan or similar, to get him off them and give

orders not to administer them again. Those drugs are bad enough for

someone not suffering from dementia; but for those with dementia,

they can cause permanent damage or even death.

But if someone from this board is agreeable, perhaps a phone

conversation would be the best and quickest way for you to learn all

you can as quickly as possible, and to keep you from " reinventing

the wheel. " Just a thought...

God bless you in this time of trouble,

Elliot

>

> Hi everyone,

> I am new to the group and just wanted to introduce myself and

explain

> my story.

> My name is Sue and I live in Cumberland Rhode Island with my

husband

> and 4 year old triplets..., and .

>

> My Dad is 77 years old and lives with my 69 year old mother about

20

> minutes from me. About 6 months to a year ago, my Dad started

> falling for no apparent reason. I myself have witnessed two

> occasions where he fell in my backyard while standing watching the

> kids play. I was concerned but he assured me it was his " inner

ear

> problem " , which I now know he didn't have, so I dismissed it at

the

> time. Then about a month ago, my mom started telling me Dad would

do

> strange things. Examples were washing and drying the same load of

> clothes(my mom is on oxygen 24/7, so my dad has done most of the

> housework for the past five years)wearing the same shirt everyday

for

> two weeks,getting dressed at 5am, for a 10o'clock Dr's

> appointment...I found it strange and told my mom to mention in to

my

> dad's next Dr.'s visit, which was October 24th.

> Well my Dad went in that Day, refused to let my mom go in with

him.

> He told the Dr that he had pain in his leg, which he never told

me,

> but I did notice he was walking in what I called " baby steps " ,

which

> I now know is shuffling. The Dr just said he needed to get out

more

> and walk...THAT WAS IT! Well the next morning at about 2am, he

woke

> my mom up and said that there were people out in the hallway. My

mom

> thought he was just dreaming and told him to go back to sleep. At

4

> am he woke her up again and said he thought he was having a

stroke.

> He was seeing black dots everywhere and points coming out of the

> wall. She called an ambulance and then called me to meet her at

the

> hospital. Well, after 3 hours in the hospital, bloodwork, CAT

scan,

> X-ray, normal tests, they said he was physically fine and that we

> should just follow up with his Primary Care DR. They sent him

> home...which was the beginning of the nightmare.

> We called his Dr several times that day and he never returned our

> calls. He was not in the office and his secretary said he would

call

> the next day. Well that night he started Hallucinating to the

point

> where my mom had to call my aunt to come over and stay with them.

He

> was using a cane as protection and " beating " hundreds of imaginary

> people with

> it. Luckily no-one got hurt and he finally fell asleep at about

> 3am. The next morning, I found a babysitter for the kids and went

> over to his house. His Dr finally called my sister and told us

his

> hospital dosen't deal with neurlogical problems and referred us to

> another hospital for a phych workup....well we went to the

hospital

> with my Dad and they admitted him to the phych unit for

evaluation.

> They did not give him any medication and he had terrible

> hallucinations that just blew us away. Everyday we would visit

him

> he would tell us about where was the night before...the jungle,

the

> desert, on a hot air balloon...it was so scary!!!! After about 3

> days, they started treating him with medication for his

> hallucinations and said that he is being treated for alzheimers

> dimentia. Well the other day, they called my sister and said that

> they are reevalutaing him for LBD...well that is where we are

now.

> My Dad is very medicated and can barely speak. We are all so sad

and

> feel like we are living a nightmare.

> Thank you for giving me this opportunity to vent.

> Sue

>