RE: My heart hurts...new here

[Guest guest]

Chris

I am so sorry about your news. The disease is frightening and you don't want

to make it real but you have to deal with the news. You will be called upon

to be the strong one now and it is a tough job but you will be great at it.

Just don't forget to be you and to take time for you. There are numerous

people out here who will help you as much as you let them.

cathy M

>

>Reply-To: LBDcaregivers

>To: <LBDcaregivers >

>Subject: My heart hurts...new here

>Date: Mon, 19 Jan 2004 09:00:52 -0500

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>

>Well, my parents came for a visit at THanksgiving. We watched a movie

>together and I was getting ready to go to bed and my dad said, " We want to

>talk to you. " We sat down and they started talking and the entire earth

>shifted away under my feet and I stepped into an alternate universe where

>58 year old mothers can be diagnosed with a terminal brain disease. They

>told us that my mom has been diagnosed with Alzheimers. We now know it is

>Lewy Body disease with some Parkinsonion elements.

>

>She has hidden it well, for the most part. I've noticed things for about

>the last 1.5 years and didn't know what to make of it. I called my brother

>in Michigan and told him that I was worried. I thought she was drinking or

>something. She would repeat the same stories over and over. Or she would

>have no recollection at all that I had told her something. By January last

>year, she was falling a lot. My parents were in Atlanta and she was

>walking down the sidewalk and just FELL on her face. She broke her glasses

>and her wrist. I thought at the time that perhaps she had had a stroke.

>But that wasn't it either.

>

>The telling point came three months ago when she drove from her little town

>of Grand Haven where she lives into Grand Rapids (where we lived for all my

>growing up life). She had to pull over to the side of the road and call my

>dad because she couldn't remember where she was or where she was going or

>even how to drive the car. She went to the neurologist to be tested.

>They asked her to write a sentence. NOw, my mom graduated with her pre-law

>bachelors degree Summa Cum Laude (the first real four-year summa in 25

>years at her University) and graduated Cum Laude from Law School three

>years later. She passed the bar exam on her first try. She's brilliant.

>Yet, when asked to write a sentence, she could only get as far as " My dog " .

> She can no longer read complicated novels like the legal thrillers she

>used to love. She can't follow or remember all the characters. Her brain

>scan showed dead little places over the entire brain.

>

>As they talked my stomach dropped. I felt numb initially. Then I cried

>until 2 in the morning. My dad is going to send her down here for a couple

>weeks at a time to spend time with the kids. I have six kids who adore

>their grandma. She just left yesterday from a 2 week visit. A few days I

>couldn't tell there was anything wrong at all, but there were several days

>that she was really out of it... slurring her speech, dizzy, depressed,

>confused.... It seems to have gone downhill VERY fast.

>

>It is so hard for me to write this because to talk about it makes it have

>to be real. I don't want it to be real. Every time I read more in the

>book my dad gave us, it makes it more real. I don't want this information.

> I don't want to know this. I don't want to do this. It can't be real.

>I don't want to think about it. I keep hoping that it's not real, that

>they're wrong. I can't imagine life without my mom and it's even WORSE to

>imagine life with my mom being NOT mom.

>

>I read last night some stuff about LBD. It seems that it is worse, faster

>than alzheimer's and I found NO HOPE on the internet. Is there no hope?

>Is there no new drug that might stop the progression? Is there nothing???

>

>

>Chris

>

>

>

>When you have come to the edge of all the light you know And are about to

>step off Into the darkness of the unknown, Faith is knowing that One of

>two things will happen:

> There will be something solid to stand on Or you will be taught how to

>fly. " _ Oveter

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