Re: Seeking Help/Advice

March 24, 2012

, I'm sorry to hear that. I felt the same in the beginning; that those

things would not happen to my mother, but they did. Even knowing it was coming

didn't prepare me to see it, but I haved learned great information from reading

the groups post. It was because of reading the posts that I learned how to

handle the situation better.

Â

Thank God that my mother woke up this morning nearly the way she was before the

fall. She cannot remember the past week at all! I began to cry and told her I

loved her and she told me she loved me to and asked me if I thought she didn't

love me. I told her a little about the week, not to much because she would be

upset of the events. It was wonderful to have my mama back.

Â

I'm not sure if you have LB or one of your LO, but it would be very helpful to

stay connected to the group and take notes of things that could be helpful down

the line; it has been very helpful for me.

Â

I look forward to keeping in touch.

Â

Robin

________________________________

To: LBDcaregivers

Sent: Friday, March 23, 2012 11:31 AM

Subject: RE: Seeking Help/Advice

Â

Hello Robin,

I just began my fight, and I will say when I first came to this group, just

over a week ago and started seeing all the posts, it scared me silly. I

couldn't believe things were going to get that much worse, even thought I

knew in my heart they would. Hearing your story brings home how quickly

things can go from manageable to horrible.

I am so sorry.

Monroe WA

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Robin Nuthman-green

Sent: Friday, March 23, 2012 4:59 AM

To: LBDcaregivers

Subject: Seeking Help/Advice

Hello everyone. It has been a long time since I have been here, but for me

now is the time when I need the support and help of others who are, or have,

gone through being the caretaker of a loved one with LB.

When my mother was told she had LB, I researched it and tried to learn as

much as I could. I joined this group and read all the posts and thought to

myself how unbelieveable that one day my mother would be experiencing the

things everyone was talking about; I really never believed that she would; I

was wrong and of course she is. Over the last few weeks so many things that

I read on here before became so helpful to me in taking care of my mother

and that is why now I am back and feel this group will be a great support

for me and a place where I can get helpful information. Thanks for being

here!

I am seeking some help with a problem that recently came up with my mother

and I believe that it may be medication related but I can't put my finger on

it.

Up to about 8 weeks ago my mom was living alone, but I was coming to her

home three times a day doing various things for her. It was at that time we

decided that maybe she shouldn't be alone anymore so I basically moved into

her home to care for her(she will be moving in with me when the addition is

done). So really up to that point she wasn't to bad and managed fairly well

with eating, bathroom, etc type things.

Then 2 weeks ago, I had returned to her house from being at my house to find

her in stuck between her glider and ottoman. She was not hurt so we laughed

a little and I helped her up. I stood her up, asked if she was steady or

needed help and she said she was fine. I turned and walked away into another

room and heard a loud knock. I stood still and yelled for her, with on

answer; I yelled again as I walked into the room and she was laying on the

floor. I rushed to help her and when I got her up she had a hugh knot on her

head and her wrist began to swell. I took her to the hospital and it turned

out she broke her wrist, but the scan didn't show any problems with her

head. She was given moraphine for the pain at the hospital and a

prescription for Tramadal; she was splinted and told to follow up with a

hand specialist to set her hand. The next day she began to have

conversations with people who were not there and had strange behaviors. I

recalled from my previous visits to this group that a UTI could cause these

types of things, so I told my sister (who thougth I was crazy) about it.

There just happened to be a nurse scheduled to visit my mother and I asked

her to take a sample and have it tested for a UTI. As it turned out, she did

have one and was given zpak (I believe) for the UTI.

My mother then went to the hand doctor to have her wrist set and was given a

prescription for Vicadin and told to take for the pain.

Over the last week my mother has gotten so much worse. She can no longer

walk or eat on her own; there are many visions of people everywhere; which

seems to be enhanced when the television is on. She has always been a very

loving person who showed great appreciation for everything I do for her, but

last evening, she was rude and mean and refused to let me help her eat.

Last night she hardly slept at all, neither did I, because of the vision and

she really believed there were many people in the house. I pretended to see

them also, walked them to the door and told them to leave. This helped to

settle her down for awhile (a trick I also learned from this group). This is

when I learned that she was looking/listening to the television and believed

the people on the TV was in the room. I turned it off and she became quite

and is now resting.

First I will say I'm sorry for such a long message, and for some you may

feel there is a lot of useless information, but there is a point. As I went

through the last couple weeks I realized that not all doctors have a clue as

to what LB is, nor do they know how different medications affect LB

patients. That is why we need to ask the knowledgable people, such as the

nuro and experienced people, such as those in this group.

As I said before, I believe that my mother's decline is medication related

and I have stopped giving her the pain meds (she is not indicating that she

is in a lot of pain for now) her family doctor told us to give her Tylonol,

but I believe I saw that we shouldn't give LB patients that either. Also,

she was given Citalopram for depression several months ago.

Again, sorry for the lengthly story, and my question is does it seem to

others that it is medication related, and if so, what do you feel may be

reacting with each other. Thank you for being here to help people like me to

work through a very difficult time.

March 24, 2012

Kate, How horrible it must have been for your mother to have broken her shoulder

and couldn't get help! The lifeline has been very comforting, I am with her

almost all the time now. Thanks for the information, I too am way too familiar

of the problems with pain medication addiction, not myself, but other LOs.

Horrible widespread problem for sure! That is another reason why I am so very

careful with its use.

Â

Thanks so much!

Â

Robin Green

Loving daughter of Bobbie

Diagnosed with LB May 2008

________________________________

To: LBDcaregivers

Sent: Friday, March 23, 2012 3:21 PM

Subject: Re: Seeking Help/Advice

Hi, Robin NG.

Mom was on Namenda and Aricept for quite some time with no adverse effects

that could be attributed to them.Â But I know from personal experience,

dementia or not, that Vicadin can be very entertaining.Â Vicadin is usually

a " right now " medication for pain.Â It isn't something to take if you don't

absolutely have to.Â Tylenol is what Mom's nursing home used.Â And before

the nursing home, Mom (we) were told to use Tylenol instead of Advil.Â I

don't know anything about the other drug you mentioned.Â But one would hope

that each doctor prescribing a medication check for possible interaction

with the medications already being taken.Â But, it wouldn't hurt to go over

the list of medications and make sure they are all OK together.

BTW Vicadin can be a bit addicting.Â I also know this from experience.

Sometimes you even feel like your pain is bad enough for the Vicadin, when

Tylenol will do the job.Â After prolonged use, you can even become afraid

to stop.Â Be very careful with it.

The things you mentioned are so similar to what my mom went through, except

she was alone and broke both shoulders.Â She couldn't remember anything

about the fall - just lying there waiting for her aide to arrive.

Kate

On Fri, Mar 23, 2012 at 11:41 AM, Robin Nuthman-green <

bobbiesdaughter@...> wrote:

> **

>

> Ann, I'm not sure which medications you are talking about that slows the

> progression, but she is on Nemenda and Areicept (spelling wrong ;-) )and

> has been for awhile. I don't know how long it takes for it to be out of her

> system, but I hope soon.

>

> Thanks, Robin

>

> ________________________________

>

> To: LBDcaregivers

> Sent: Friday, March 23, 2012 11:10 AM

> Subject: Re: Seeking Help/Advice

>

> Dear Robin,

>

> ... I took her to the hospital and it turned out she broke her wrist, but

> > the scan didn't show any problems with her head. She was given morphine

> for

> > the pain at the hospital and a prescription for Tramadal; she was

> splinted

> > and told to follow up with a hand specialist to set her hand. The next

> day

> > she began to have conversations with people who were not there and had

> > strange behaviors. I recalled from my previous visits to this group that

> a

> > UTI could cause these types of things, so I told my sister (who thougth I

> > was crazy) about it. There just happened to be a nurse scheduled to visit

> > my mother and I asked her to take a sample and have it tested for a UTI.

> As

> > it turned out, she did have one and was given zpak (I believe) for the

> UTI.

> >

> > My mother then went to the hand doctor to have her wrist set and was

> given

> > a prescription for Vicadin and told to take for the pain.

> >

>

> Those pain medications can cause hallucinations - even in people without

> LBD, so stopping them is a good idea if the pain is tolerable without them.

> I hope your mother will be better when she's flushed them out of her

> system and got the UTI under control. You don't mention any of the

> medications typically used to control hallucinations and slow the progress

> of LBD. Is she taking any of them? Have you talked to her neurologist

> about them?

>

> Best wishes,

>

> Ann

>

March 24, 2012