new to the group questions about time

[Guest guest]

Hi to all,

First of all I am so glad I found this site, I have been reading

messages for an hour or so now, and finally decided to get the

courage to post.

My 87 yr old(now)grandma was diagnosed with LBD 2-3 yrs ago after a

terrible night with people in her house. She lived alone, and had

been quite independent since my grandpa passed away in 1989. She was

very descriptive when telling us about the people, and there was

other confusion as well. She couldn't find her car, and lost the

keys to the one she had borrowed, etc. She was taken to the hospital

and they ruled out stroke, etc. This delusional thinking lasted

about 24 hours for her this time. She was seen by a geriatric

psychiatrist, and extensive neurological testing done, and LBD is

what they came up with.

Her only surviving child lives in Canada, and we are in Iowa, so it

was necessary for her to go to the nursing home, as there were no

assisted living facilities around close for her to go into. She

really didn't have a problem with that, as she realized she couldn't

be alone anymore. Although, at times she still did ask about going

home, and getting her car back, etc.

She has done wonderfully in the nursing home, her dementia has

progressed a little, and she is sometimes confused about things, but

not off the wall with hallucinations. The only time in the last 3

yrs she has had hallucinations was when she was hospitalized for a

hip replacement, and another time for cellulitis. The hip

replacement was 2 yrs ago and the cellulitis was 3 weeks ago.

Last week when I visited her, I go once a week at least, she was

telling me about how they moved her room to the 2nd floor. There is

no 2nd floor. She also has been having more problems with

incontinence, and even couldn't dress herself one day this week. We

did visit with her docotor on Fri, and she has put her POA into

action. She has been taking Aricept since her diagnosis, and also

takes Zoloft for depression. We assumed the depression was due to

losing her husband in 1989, one daughter in 1991 and another daughter

in 1999. However, the more I read I see that depression is common in

LBD patients. The doctor did up her dose of Zoloft and added

Alprazolam AS NEEDED. She has had 2 instances when she was violently

mad while at the nursing home, once over taking some medicine, and

another (while she had the cellulitis) over a meal. This we

associated with the infection and just kind of brushed it aside.

I have rambled long enough, but there is just so much to the story.

I guess my main question or concern is why did she do so good for so

long, and now all of a sudden is back to the hallucinations? I know

she could be forgetting them, or just not mentioning them. I am just

wondering where we are at as far as a timetable is concerned, and

what the next stages are going to be like.

I don't know if anyone has the real aswer, but any help from those of

you who have dealt with this would be appreciated.

There are 2 of us 10 grandchildren who visit regularly, so we are the

ones who sees the downhill slide. All the others think she is fine,

and wonder why she is in the nursing home. It is so frustrating for

me.

Please help me to understand this awful illness. I can see from the

other posts that you are all VERY supportive of each other and I need

that right now.

Thanks,

[Guest guest]

said:

Please help me to understand this awful illness. I can see from the other

posts that you are all VERY supportive of each other and I need that right

now.

*****************************

Well - I cannot answer your question as to why your grandmother's

hallucinations started up again. I do know that some people on this list

have had some bad experiences with Alprazolam (Xanax) but different people

react differently to any medication.

All I can do is offer my support!!! I DO know what it's like to have family

members who are swimming in that river (De Nile!) and it is hard to deal

with a person with dementia when others simply refuse to see what is

happening!

Feel free to post and vent as often as you need to. I am a relatively new

poster myself and not even sure if my mom has LBD. There are many others on

this list, though, who are VERY knowledgeable and can offer a lot of

assistance!!

cyberhugs to you -

carol

[Guest guest]

Jayn from S Georgia reporting in !!!!!!!!!!!!!!!

[Guest guest]

In LBDcaregivers , " Bill Phelps " <billp@s...> wrote:

> Can we do a quick location check?

, Long Island, NY

[Guest guest]

,

I did not give Mom meds. (She died in Oct, 02.) She could not tolerate

them. If I tried anything, I gave her half or quarter doses of what

every the MD prescribed. Mostly I just took her off as she did not do

well right from the start.

She had always taken a low pb pill and her MD had her on a low dose

thyroid pill.

When a specialist put her in the hospital to " adjust her sleep pills, "

they gave her meds without consulting me. I ended up after 20 days

carrying her out of the hospital into a nh. She had been alert and

doing ok for herself up to that point.

She lasted one more year and I fought the nh the whole time as they

continued to want her on meds. Guess they would have less work to do if

she stayed in bed.

I hated it.

As a side note for who ever is talking about sleep meds, I did have some

luck with otc Melatonin.. I use it my self and no groggy next morning.

I get it at the Health Food store or Drug store.

Donna R