RE:

January 23, 2003

Hi Sandie,

Thanks for asking. Things for my Dad and the CBRF are going as well

as can be expected. I called him in the evening of his first day

there and he sounded pretty good, but also pretty tired. It seems

like he's doing well at getting used to the new place, but sleeping

in a new bed and new room will probably take some time to get used

to. I think his wife has backed off a little on moving all that

stuff into his room. Tomorrow she and I are taking him to an

appointment with the new memory care clinic we set him up in. The

testing is supposed to go from 12:30-3:30, I hope he can last that

long. Plus, 1.5 hours of driving.

------- of Madison, WI (where we are celebrating a big win over

the Hawkeyes last night)

>

> How is your dad adapting to his new surroundings? Did his wife get

all

> the " things " in place for your dads room? You have been in my

thoughts

> so it is wonderful seeing a post from you. Still praying for the

> knowledge, strength and courage it takes to live with LBD.

> Stay warm!

> Sandie

January 23, 2003

Please keep us posted on results from your dad's appointment. Is it

neuropsychology testing? Sounded familiar, with the time slot you

mentioned. Do enjoy your time with your dad. I am sure your dad will

bounce back after he settles in and gets used to his new surroundings.

He is definately fortunate to have such a caring family. I will say an

extra prayer during the 12:30-3:30 time span tomorrow.

Blessings and hugs to ya!

Sandie

(well, now, lets just rub a little salt in the wound of the poor

Hawkeyes) Congrads on the win! {:~}

January 25, 2003

One part of your post to Sally caught my attention...I noticed you said

" medical profession " . Do you have trouble using " profession " and

" medical " in the same sentence? I do!! During my LBD journey with my

dad, I quickly learned to say " medical field " as " profession " didn't

quite fit the realm. A professional, in my opinion, has adequate

knowledge to perform duties. See where I am going with this? I

constantly educated nursing home staff (at all levels), doctors, nurses,

emergency medical techicians, social workers...and this list goes on and

on!!

Also, I am flattered by your suggestion for " Official Spokeswoman for

LBD " ...sounds like you and Sally are banning together on one side. Both

of you have brought me many smiles and have utterly warmed my heart.

Sooooo, when do we get started!?!

Hugs to you!! And keeping you in my prayers.

Sandie

in Des Moines, Iowa where it snowed another inch and tomorrows high is

supposed to get to 11 degrees...just like to winters I am used to!!

Just love the snow, heck, maybe I will be snowboarding again soon.....

January 25, 2003

Well, here we go with the many similarities/differences of LBD. My dad

really didn't talk much the last year of his life. If he did it wasn't

in sentences, just a word every now and then. Usually a reply to a

question

as in " ya " or " no " . During his sleep modes, sometimes his eyes were

open yet it was as if he wasn't awake. He just laid there, usually in a

fetal position, looking at or past me. Then, other times he was

completely asleep, and I was unable to wake him. Both of these sleep

modes could last a day or even 2 weeks at a time. So, as you will

notice more and more that with LBD, there is almost a mirrored image of

our LO's lives, yet they can also be so individual. So sorry I couldn't

validate your experiences with the experiences of my dad's...similar yet

different. This LBD thing just continues to baffle and confuse me!

Hang in there!! My prayers are with you!

Hugs-

Sandie

Des Moines, IA - the snowy Des Moines, that is

January 28, 2003

Hi Sandie,

Thanks for asking! I wasn't able to get to a computer for a few

days, so I spent the last couple of days trying to catch up on all

the posts, which there are a lot! Keep it coming everyone!

Your ESP kicked in again, yes it was neuropsych testing. The goal

was to find out what cognitive level Dad was at, and to certify that

he is disabled enough to collect benefits (which he is). The testing

was dreadful on him, it last about 2.5 hours and he was in tears

after it was done. The psychologist was a wonderful man that

understands this disease (ALL aspects), and knew about some of Dad's

problems even before they were brought up. My dad has been extremely

embarrassed about his behavior, and doesn't want friends to see him

in public. The psychologist said, " You wouldn't be embarrassed if

you had cancer, this is no different. " In fact, he was so good we'll

probably keep this guy in the picture for counseling sessions.

The good news is his cognitive skills like memory and reasoning are

not declining that quickly. And the psychologist thinks with more

appropriate medication that some of his behavioral symptoms

(delusions, hallucinations, depression) can be better controlled.

I'll believe that when I see results, but I'm going to be optimistic.

I can't stress enough to everyone here that you need to find

physicians (and psychologists) that have experience in this disease!

A doctor who just reads journals and web pages about it is not

enough. It takes a team approach coordinated by a neurologist that

specializes in dementia (also need a neuropsychologist, geriatrician-

IntMed, and geriatric psychiatrist).

Days in the CBRF are up and down. He had another resident try to get

in his room the other day. Of course we all know it's typical of AD

sufferers to do this, but my dad is pretty paranoid people are trying

to take his stuff. On the night before the testing, he had a

horrific nightmare that interrupted his sleep and affected him the

whole rest of the day. That seems so strange to me. When I have a

nightmare, I forget about it right away. Just goes to show another

side of how insidious LBD is.

----- in Madison, WI

>

> Please keep us posted on results from your dad's appointment. Is it

> neuropsychology testing? Sounded familiar, with the time slot you

> mentioned. Do enjoy your time with your dad. I am sure your dad

will

> bounce back after he settles in and gets used to his new

surroundings.

> He is definately fortunate to have such a caring family. I will

say an

> extra prayer during the 12:30-3:30 time span tomorrow.

> Blessings and hugs to ya!

> Sandie

> (well, now, lets just rub a little salt in the wound of the poor

> Hawkeyes) Congrads on the win! {:~}

January 28, 2003

Glad you are back! This keeping up with emails can become overwhelming,

yet the positive side is there are so many people willing to reach out

and help others. What an amazing group!! I appreciated your view on

the importance of a " specialists " involvement in the treatment and

journey of LBD. I had a wonderful neurologist, and a neuropsychologist

involved in my dads care, except when he went to the NH. Then, I stayed

in touch, via phone, with the neurologist. He personally would call me

back with information on how to help. I too, can't stress enough how

important it is to have a doctor that " knows " the disease. Then all of

the carers energy can be spent on caregiving, instead of educating.

Please keep us posted on your dad. I am anxious to hear his continued

success, and what new meds. will be introduced.

Keeping you in my prayers.

Sandie

in snowy, and icy Iowa...just another winter

January 29, 2003

Sandie -

I would love to try and get involved in some type of reunion (although I

am new to the group). Have you done this before? Let me know some more

specifics and ideas. It would be great!

Thanks,

Martha (S.C.)

January 29, 2003

Martha

Haven't had a reunion/gathering as of yet. Had thought about it often,

then talked it over with Dennis...it was his challenge to me that truly

brought this from being an idea to a possibility.

As for now, just throwing out the idea, asking for input, timelines,

what works for others...trying to piece it all together.

Thanks for the input. I will write you down as a " yes " so far.

Sandie

P.S. Keep praying about this! Thank you!

January 29, 2003

I was surprised when I read your dad's neurologist didn't want/need to

see your dad for another year, unless something else came up before

then. My dad was seen every 3 months by his neurologist. Not that one

is right and the other wrong, I guess I did feel better knowing the dr.

was involved. Keep us posted.

Sandie

February 2, 2003

Pat

In my post the other night of sending up extra special prayers, I forgot

to mention your name, but never forget in my nightly prayers to include

you for heart strings to mend, strength to continue living, and love to

surround you daily.

You are in my prayers tonight, and always.

Sandie

February 5, 2003

I still have my note from last week, to call you. I refuse to throw it

away until I follow through, and call. When I think about it I figure

you are at work, then in the afternoons I either forget, get busy, or

just don't pick up the phone.

Thank you for the " hug " offer. I am so proud of you for jumping in and

offering your information and help to others. Doin' a great job.

Sandie

fellow-ette Iowan

February 10, 2003

I haven't filled out a profile. I didn't even have a Yahoo user name. That's

why it took so long to figure out! I'll make the profile another day, I've

had enough with that for today!

Those pix were taken when I was in Iowa in October.

You don't look bad, but I'll bet you look cute with short hair!

K in F

February 10, 2003

Hello, and it is nice to meet (see) you. Your profile showed 'not

available'. Did something happen there? I know, when my dad passed

away I had updated my profile to show the date he died.

It is truly wonderful putting a face to a name. I was very please to

see your dad had taken the picture of you and your mom. When were the

photo's taken?

Thank you for sharing your family! :-))

Sandie

February 10, 2003

You are so generous with your compliments...thank you. It was odd when

I first got my hair cut, it was like dad didn't know me until I talked.

Then he would smile.

Let me know if I can help walk you through the Yahoo " sign-in " when you

are ready. Listen girl, if I can figure it out (with this WebTV thingy)

you can figure it out too! Once in the Yahoo Email group you can set up

a profile, look at all the pics, post straight from the group, read the

archives...more than you are able to do now. Let me know if I can help.

I wondered if the pics were when you were here in Iowa. So, if this

" Gathering Turned Convention " ends up in LaCrosse, do you plan to

attend? Would love to meet you in person, and you could bring Furby

too...as long as he doesn't talk too much. Maybe I will pick him up

from your parents house and surprise you. ;-)

Hugs to ya!

Sandie

February 11, 2003

Is your grandpa taking in any food or liquids? Has he had a rapid

weight loss? Just a few questions, if I may. Also, a nurse at the

hospital told me that sometimes a person will get a last moment of

strength, almost as an inner fear helping them...then they go down. Or

sometimes the inner strength and last fear will cause them to rebel and

get a little better for a while. My dad seemed to be up, walking, slow

and very weak, but walking none the less and passed away 4 days after

this nurse had told me her theory. Even though I thought I was prepared

having dealt with the symptoms for 6-8 yrs and diagnosis for 5, it hit

me like a brick wall. Do cherish these moments with your grandpa. Hold

on to the memories of walking him around and study what he studies.

Soon those memories will be invaluable.

My prayers and hugs are with you.

Sandie

February 11, 2003

Ooops, sorry, I asked the same question again without reading all the

emails first. Again, I asked if your grandpa was taking in

nutrition...so please disregard the next one.

First HAPPY BIRTHDAY to your son! Enjoy your day with him! I am sure

he will just love (as you said, NOT) the cake decorated the way you did.

I do believe my son's would have a lot to say with that one!

Just a note about your grandpa...Hospice told us that a person can

survive a couple days on a small amount of liquid. I guess a body

doesn't even need food (solids) to survive. Even if it is just water or

juice. In the time from Sept. 8-20 my dad had taken in less than 1 1/2

cups of a chocolate nutrition drink. Nothing else. But because he had

taken in the nutrition drinks his body was able to function. He was

thin, so very thin and weak but hung on. I hope this isn't too graphic

or dreary. I just wanted to pass along what a very insightful nurse had

told me in the end. Seems that so many people were there to talk to up

to that point then know one had any answers after that. I valued this

nurses information, atleast I felt I had something to go by.

As always, my prayers are with you. Stay strong!

Sandie

Des Moines, IA

February 11, 2003

Sandie, There was a little weight loss whilst he was in the hospital but not a

great deal, it's strange that of all the things he's 'lost' due to LBD his

appetite seems to be still going strong.

As I said this morning he doesn't eat as much as he used to, there are days when

he doesn't want to eat and we don't force the issue as long as he keeps taking

fluids.

Dehydration doesn't go well with this disease, you can see the confusion

starting and you then have to start nagging him to take even a small amount.

We were asked to keep the docs informed after last week so my mum phoned this

morning and they've now started him on another neuroleptic saying that if things

continue the way they have been then they have to consider taking him back into

hospital.

My family and I are now so bloody fed up with all the 'messing' with his brain,

do you know what I mean?.

He's not even getting the chance to come off one drug when another is being

pumped into his system, they've also upped the dose of his sedative,it doesn't

make any difference what they do, people with LBD go through phases of turning

night into day.

We're wary of saying 'no' and taking him off certain drugs as he so desperately

wants to stay at home and we're not sure how things would go with him

withdrawing from the drugs.

Temazepam (two at night)

Madopar (one four times a day)

Neuroleptic ( can't remember the name,I'll find out.one in morning one at night)

Paroxetine(one at night)

Aspirin(one in morning)

Selegiline(one in morning)

Proscar(for prostate, one in morning)

Frusemide(one in morning).

Any suggestions as to what we can do would be greatly appreciated.

Speak to you later.

.xx

Re: