Re: Back To Rose-New to lbd

[Guest guest]

Dear Rose, I join Imogene and the many others who are sure to welcome you. This

is a horrible disease and affects all of us. I'm writing as the daughter of a 78

year old mom with LBD, Parksinson's and underlying mental illness.I'm her sole

family in this area. She is unstable, unreasonable, difficult and very sick. As

I've shared here before, she was an abusive mom, and yet through coincidence,

luck or grace, we have had a warm relationship

for the nearly 4 years she has been living in the Retirement Community where I

work.

I would very much like to respond to your post, and hope that is okay with

you. It's past midnight here in Chicago, and I must return here to work by 7:00

AM. But saw your message, and couldn't leave my desk without writing . Rose,

there is help, comfort and strength here in this place among unmet but

well-known folks who truly care. I've only been here six months, but now can't

imagine getting along without each of them.

And there is help for you and your mom, too! If you have time, could you

please write back and tell us more: what kind of MD does she have, what was the

LBD diagnosis based on, what meds and dosages is she on and for what; what other

health problems does she have; what does her MD say about the hallucinations,

delusions, other symptoms; how is s/he treating those problems; does s/he

recommend a nursing home (NH) and why; does she go out on her own; drive or walk

anywhere; go to community or religious activities; see friends; do you have

sibs; what's the kind/size of your/her community; (will help us determine

available resources); what's her financial situation - insurance coverage for

example; do your mom's hallucinations upset her; what do the visiting nurses

observe;etc. I know this is a lot, but all such info makes it easier to work

through what's going on now and what comes next. No such thing as too much

knowledge or too long an e-mail!

With children and your mom, you don't have free time. But, please, if you

haven't done so yet, go to Lewy Body Dementia Association web site and browse

resources for caregivers and the articles on treatment and meds by Dr. Boeve.

This disease is unique; even many doctors don't understand it; and we need as

much self-education as possible.

You are wise in recognizing one of the key features of LBD - fluctuating

cognition and behavior. My mom, too, sometimes seems like her " old self, " but

it's a trick of the disease. She has dementia, period. By its very definition,

deementia makes it impossible for your mom to comprehend her illness or own

behavior or what she may need. We all attempt it at first, but only frustrate

ourselves and add to their confusion, fear and distress when we try to explain

or reason with them. In other words, you won't be able to make her " understand "

why she may need to go to a NH . . . or whatever next step needs to be taken, be

that change of meds, change of housing, additional home help, etc.

Depending on the hallucinations, entering her reality may be reassuring. You

cannot talk her out of them or of delusions. Some medications help calm my mom,

eliminate the worst of the hallucinations and delusions, and assist with

word-finding. And I'm grateful for that. But it's still dementia. And she still

becomes distraught, hysterical and angry at times. It's the disease. To borrow

from 12-step programs, she didn't choose LBD; can't change it and can;'t control

it. And neither can I. But I can learn about it, become her advocate, figure out

what's best, and make decisions on her behalf.

This is a difficult, painful journey for those with the disease and for all of

us around them. But many here on that journey, and we are all here for you -

just as you, in sharing, are here for us. So, Rose, please write back. We really

do care!

Peace,

Lin

Iward27663@... wrote:

Rose, Welcome on board this roller coaster ride.

I wish to encourage you, but really don't know how. I feel empathy about

the pressure you are under. I am sorry. Do you have access to senior services,

such as council of aging? The nurses that come to visit may know of a

service that can provide full-time care, without having her go to a dementia

center

just yet. Just for medicines, she may not need nurses twice a day, which can

be expensive. They could visit once a week to check her status, if she had

someone staying with her. She has a ways to go yet. This is the difficult

time, when she does not believe she is sick, but needs help. AD patients are

usually that way.

Ask her doctor about her medications. He/she may be able to give her

something to help control the hallucinations for a while yet. Razadyne has

helped my

husband for about a year now.

LBD is noted for causing agitation in patients. They can't help it. If they

had a tendency to be that way all their lives, then it just becomes more

deeply ingrained. For that I am very sorry. Once in awhile the patient does

become docile, and sweet. So hope the right medication can do that.

I agree with the nurses, Go along with the anger and hallucinations. Where

possible, or leave the room, until the situation subsides. You will never win

and argument with an LBD patient, so don't even waste your energy by trying.

I kept a list of many things my husband had done and no longer could do.

Then he saw a tiger in the hall when he was wide awake. I asked him if he felt

that was normal to see that? No, he didn't. Later we sat visiting and having

a glass of wine. We talked a bit, and then I brought out my list. I asked if

he remembered our trying to install the lamp? Yet, he used to do it all the

time. He agreed. I wondered what caused the change. And, then I talked about

the new lawn mower wheels that he couldn't figure out how to install. I said,

" Darling, why do you think this is happening to you? They are not normal for

you. Do you think we need to see a doctor? " He asked to see my list, and

remembered enough of the events to agree with me, especially about the tiger.

You might try this with your Mom. I wouldn't mention a nursing home just

yet. Help her in gentle subtle ways to come to her own conclusions as to why she

has to use nurses, and not doing her own shopping. Assure her that you love

to do for her, but you are wondering why she is no longer able. Age is not

the reason when she is in good health. She can't reason, but she can eventually

see how things are, and you can gently help her understand that it is not

safe for her to be alone. A great deal of assurance is needed from you to let

her know that you are there with her and for her.

She is scared. She may not act it, but she is. In fact the ugly surface is a

cover up of fear.

An LBD patient's " reasoner is broken. " They cannot reason, so trying to do

that or to get them to see things your way won't work. Their minds don't work

correctly anymore. A caregiver has to learn how to think like they do in

order to help them come to their own conclusions about doing something

reasonable. It is strange I know, but it works. Agree where possible. And be

agreeable

or leave the patient's presence for awhile. They are in a whole new world of

their own, and are into themselves. If we become impatient it is because we

expect them to act like a normal person. After all they look normal, and talk

normal, but they are not even a child. A child can be trained. LBD can't be

trained. They are still our parents, or husbands, but far more difficult to

deal with than a child.

My dear, Rose. My heart aches for you. What a terrible situation to be in. I

don't want to go to a nursing home either, but I may have to. I sure don't

want to live with my children. I amused to running the show, and they are used

to it now too. Big time clash I am afraid. I am 74, so it may come soon for

all I know. right now, fine. But, for how long? I have made up my mine not to

burden my children. My husband and I have nine together. MY six are in our

photo album.

I am sure others have much to say, but I do want you to know I care, and

sure hope things work out well for you and your Mom.

Imogene

Caregiver for my True Texas Gentleman husband of 36 years. He has LBD with

Parkinsonism.

In a message dated 1/15/2007 4:21:18 AM Central Standard Time,

ellarose12@... writes:

Hi, all - my name is Rose. I am 53 with 3 teenage children. My mother was

diagnosed with lbd about 1 year ago. She lives by herself - about 10min.

drive away from me. She has nurses visit her twice a day to give her meds. and

lunch. I see her about 3-4 days a week to do " nice " things such as

shopping, groceries, visiting grandchildren etc. Her biggest problem is

hallucinations and delusions, with no insight into her disease. She thinks her

only

problems is a word finding difficulty. She is quite good physically, and hence

doesn't see the need for help. My major conceerns at the moment are:

* Her friends are applying pressure on me to put her into a dementia unit

or bring her to live with me.

* I just don't have the internal resources to have her live with me. I am

willing to do whatever I can to support her to stay home, but can't offer any

more than that. I just don't have that type of relationship with her, but I

feel extremely guilty about it. I feel very impatient with her if I see her

for long periods of time. She is like a bottomless pit, and argues about

things she knows nothing about. The nurses say to go along with her

hallucinations, but then this creates a problem if I need to give her examples

of why

she needs to go into a dementia unit.She also varies enormously - some days

she almost seems like old mum, and I feel huge remorse. Sorry about the

length of email - I don't think the future emails will be as long. bye for now !