Re: ROLL CALL! - Carbo

[Guest guest]

Kudos to you!

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> > Hi, here. I have been with this group since 2006 which is when my mom

was officially diagnosed with Lewy but it had been going on before that. Mom

has always been different, difficult, a loner, seems there has always been a

disconnect making it hard for her to have normal relationships with anyone

including family. When she started behaving extra strange, suicidal, more

paranoid than normal etc I took her to the family Dr. She was treated for

depression but things got worse. After several Dr visits and several mini mental

exams to test for Alzheimer's (which she passed with flying colors every time!)

I told her to tell the Dr what had been going on at her apartment at which time

she launched into a detailed description of the strangers who had been coming in

her place while she was asleep etc etc. I had been researching and suspected

Lewy, she fit the symptoms to a tee. Once the Dr heard her wild stories it

clicked for him and he immediately made the Dx.

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> > Over time it became apparent that mom could not be on her own. She railed

against the change but we wound up moving her in with us to a lovely home we

bought just for the purpose of accommodating her. Although I had sworn to myself

I would never live with her, it seemed like the only thing to do. So over time

we worked through several health issues she had never taken care of including

getting a hearing aide which changed our lives more than it did hers. I highly

recommend it for the families of the hard of hearing, who, generally will not

admit they are hard of hearing. My moms hearing loss was shocking once tested

and she was still in denial!! Her general health is good. She is strong and can

take care of dressing and all that stuff. Ever the optimist I thought I could

finally win her over because, after all, I was helping her, doing everything for

her. But that was a pipe dream. Her behavior got worse over time, becoming

physically & verbally abusive and combative. About a year and a half into our

new roommate status I felt like I was going to have a hard time continuing.

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> > There is a caregivers resource center specific to brain disease and injury

in my area which I hooked up with. They offer counseling which I attended,

fantastically helpful. Seeing me getting to the end of my rope, they suggested

that because my mom had been married to a WW 2 veteran that I apply for the Aide

and Attendance benefit $$ offered by the VA. which would help pay to place her

when the time came. I knew the time was fast approaching so in May of 2009 I

applied for the benefit. It was no easy task filling out the papers, sending for

documents, researching etc. Sixteen months after I started the process mom was

accepted and started receiving the benefit.

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> > I had picked out a board and care home last summer and when my mom got

approved for the benefit I contacted the owner and agreed to take a room which

was opening up next month. In the meantime my mom did something very outrageous

and dangerous while we were both at work. At that point I knew I could not leave

her in the day any more. I called my board and care guy and he had an opening in

another home that he owns so within days I moved her. She was so awful to me in

those last few days. Even though she had been railing against living with us for

three years she was mad to be moving on. She said every awful thing and laid

every guilt trip on me. I started by counting the days and soon I was counting

the hours until I could move her. Sounds mean of me but I couldn't wait for her

to leave. I feel good about everything I have done for her. I feel like I picked

the very best place for her to be. I got her the VA benefit to help pay for it.

I have gotten her health issues under control. I have taken good care of her.

She will never know that. Even in her " right " mind she would never acknowledge

it. So now she has a wonderful new place to be and my husband and I are enjoying

our new home together for the first time in 3 years.

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> > So far mom says the place is nice, the people are nice but it is not what

she wants. She is nasty to me when I go there. It is ok because I can leave. I

could not leave when she was nasty at my house. Owner says it takes about 6

weeks to adjust. There is nothing I can do to make her happy. ly, tired of

trying. The board and care is more regimented than it was at my house which has

her feeling anxious I am sure. Keep ya posted.

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> > This group has been very helpful. I feel so bad for the many here who have

suffered over their lost relationships with their Lewy loved ones. In some ways

I have been lucky because I never had the best friend thing going on with my mom

so I haven't lost that to this disease. I always hung in there thinking maybe

someday my mom would think I was the cats meow. But when you get the Lewy

diagnosis it is really time to let go of that dream which has been a little

hard.

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> > So that is where we are in our Lewy journey. It has been interesting reading

everyones stories.

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> > & mom Ginny age 87

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> > aricept (helped with hallucinations)

> > zoloft (I have no idea if that is doing anything)

> > statin meds for cholesterol -works good

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