Re: caregiver

[Guest guest]

,

One of the rules are we must go into their world because they can't come into

ours.

My mother took very few drugs because she reacted to them. And when I did, I

just took her off them. Some just are going to make things worse and you might

have to fight with a few MD's and be willing to live without drugs.

Hugs,

Donna R

Cared for Mom 3 years in my home and the last year at a nh. She passed away

from LBD in 2002.

caregiver

I am the daughter of a 79 year old mother with LBD. She was first diagnosed with

Parkinsons and dementia. We had her re evaluated 2 months ago by a nuero psych.

We had read an article in Oprah magazine that confermed to us that she had LBD.

Right now we are trying to get her meds straightened out. She was on carpadopa

for parkinsons and was just taken off of it and put on donepezil. I am now

seeing more dizziness after 3 weeks of being on it. She has horrible

hallucinations , another part of the disease that I am learning to cope with.

Not sure whether to argue with her or just go along when she tells me people are

standing over her laughing when she falls . It is all so real to her.I try to be

at her assisted living place every other day so that I can keep her mind calm

,it seems when I am around she does the best and the depression is less.I am

burned out at times especially with a full time job ,husband and college son.I

have a brother who lives close by but never goes to see her. I just would love

some support. We are trying to find her a new place to live right now because

the memory care place she is at is private and we are not feeling they fill the

needs for LBD. Please help me understand the disease more.

[Guest guest]

Hi ,

I've been caring for my mil in our home. She is 94 with LBD and

parkinson's. We still have her taking carblevo because it helps her stay

mobile and does not cause side effects for her thank goodness. The dose is

low and divided up through the day to stretch it out as best as possible -

this gives good coverage of a little at a time. She also uses Exelon patch

which has been a real help and even now is still providing some help for her

thinking processes. She did not tolerate Donzapril at all but has had

absolutely no problem with the Exelon patch. We started at the low dose

for three months to make sure it helped some and had little side effect then

took the jump to the full dose. Once in awhile her doctor has us take her

off of it for a week or two to rule something out and we notice the change

in her ability to think and recognize people but so far, once back on it for

a week she seems improved.

Sometimes the hallucinations can be from other things and I'd advise you to

get her full list of medicines and go over it with a fine tooth comb to see

what's there and understand what each medicine is for and what class it's in

and it's action and so on. Also, very important, many times our loved ones

have hallucinations when they have urinary tract infections or pneumonia or

some other kind of infection going on. If she has even a low grade fever,

and esp if her urine smells strong, it is a good idea to make sure she does

not have one by having a culture and sensitivity UA done. It's a standard

UA, clean catch, with the culture/sensitivity part done if there's sign of

infection. The uti's put my mil out in orbit around some other planet -

it's amazing how much it changes her mental functioning - and also often

brings agitation and hallucinations. I would suggest to anyone that

before any medicine is changed, if there is troublesome behavior, make sure

to rule these things out with UA and for pneumonia a chest x-ray. Many

doctors who have experience understand how these seemingly small things can

bring about big mental changes.

What is the place doing to prevent your mother from falling? That would be

a big concern for me. My mil is a terrible fall risk - she has no balance

and no sense to know better and was like that for years. She fell many

times before we got to the bottom of what was going on, fracturing arms and

back twice. She's real lucky they were able to fix her back with

kyphoplasty. I did intense physical therapy with her at the advice of the

specialist we consulted at UCSF Memory and Aging Clinic for about 18 months

and that really helped. She exercised every day 3 x a day but always with

someone along side her to prevent falls. I also used a gait belt so I had

something to grab and steady her with if she started to go down - or it is

also nice as a handle to guide her gently if she's going down anyway. I

would look into physical therapy for her if you can and look for one that

has people who know Parkinson's issues - they are usually wonderful with

this.

There are wonderful supportive people here, I've found much welcome and help

since joining last year.

Dorothy

From: LBDcaregivers [mailto:LBDcaregivers ]

On Behalf Of Unger

Sent: Tuesday, August 09, 2011 4:52 AM

To: LBDcaregivers

Subject: caregiver

I am the daughter of a 79 year old mother with LBD. She was first diagnosed

with

Parkinsons and dementia. We had her re evaluated 2 months ago by a nuero

psych.

We had read an article in Oprah magazine that confermed to us that she had

LBD.

Right now we are trying to get her meds straightened out. She was on

carpadopa

for parkinsons and was just taken off of it and put on donepezil. I am now

seeing more dizziness after 3 weeks of being on it. She has horrible

hallucinations , another part of the disease that I am learning to cope

with.

Not sure whether to argue with her or just go along when she tells me people

are

standing over her laughing when she falls . It is all so real to her.I try

to be

at her assisted living place every other day so that I can keep her mind

calm

,it seems when I am around she does the best and the depression is less.I am

burned out at times especially with a full time job ,husband and college

son.I

have a brother who lives close by but never goes to see her. I just would

love

some support. We are trying to find her a new place to live right now

because

the memory care place she is at is private and we are not feeling they fill

the

needs for LBD. Please help me understand the disease more.