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Old 06-11-2008, 07:03 PM   #1
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Extensive Leukomalacia - MRI Report

My brother and I took our mother back the neurologist for follow-up after her MRI.

He says there is quite a bit of soft tissue/white matter or Ex. Leuk. which from what he told me is the result of Alzheimer's. He said it is age related; and of course, irreversable. He was careful with his wording so she wouldn't pick up on what was being said in front of her, (not that it would even be understandable to her) but I think I got the gist of what he was trying to say.

Mom was on the P.A.W.S. Program at the NH, but keeps falling down due to dizziness at times; lack of balance; or perception of where she is sitting. He ordered her to be full 24/hour ambulatory assistance. After watching her try to walk, he said she shouldn't be left alone for a minute. Problem is, she still is very mobile and physically able to walk if she doesn't have one of her spells. She wears an alarm because sometimes she tries to leave the building.

The head nurse says she is going to put a bed alarm on the bed so they will know when she gets up..and she's also only about two rooms away from the nurse's station, so I hope that helps.

It's amazing how my Mom has declined in just a few months. Unfortunately, she does not want to interact with anybody socially, other than family, to do excercise, crafts, music listening; or even eat in the dining room, etc. When we try to get her involved, she becomes terribly agitated, so we gave up on that. So sad.

Mom's house went up for sale yesterday. It's rather surreal to see the only home I grew up in; that my Dad built; to have a "For Sale" sign in front of it. But, that home needs a loving family, not empty and silenced rooms.

I'm okay. I keep telling myself I'm only going through what every child does eventually.

Last edited by sunnydaze1; 06-11-2008 at 07:06 PM.

 
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Old 06-12-2008, 10:49 AM   #2
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Re: Extensive Leukomalacia - MRI Report

I am sorry the report was as grim as it was but also glad you have some explination for what is going on with your Mom. What a double edge sword it can be. Relief that you know why and grief that you know why. You have such a good perspective. I have come to the conclusion that much of our job is mental. If you can keep your head in the right place and not become overwhelmed you can deal so much better. It's just hard to have those talks with yourself when you are overwhelmed.

I do understand how you feel about your life time family home with a for sale sign in the yard. That is something I am going to have to face as well. A home needs a loving family as much as a loving family needs a home. Right now, because of one of my sisters, Mom and Dad's house is sitting (has been for 9 months) almost as it was when Mom and Dad moved out. I think that breaks my heart more than driving by and seeing happy children, that are not us, playing in the yard would. I threw out the subject of the house in an e-mail to my sister just last night. I can only hope that she is finally ready to move.

I am glad you are ok, at least for the moment. Grab a towel and hang on to what you have. I am glad the nursing home is being so helpful and finding ways to deal with your Mom's inabilities. Hopefully the bed alarm will help.

Love, deb

 
Old 06-12-2008, 12:58 PM   #3
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Re: Extensive Leukomalacia - MRI Report

I'm sorry too that your Mom got a scary diagnosis. I had never heard of this before.

You just have to take things one day at a time. God be with you.

Love,

Martha

 
Old 06-12-2008, 03:32 PM   #4
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Re: Extensive Leukomalacia - MRI Report

Deb, so you do not have POA; your sister does, correct? Does she know that a vacant house raises red flags with the insurance company for your parent's Homeowner's? I went to my mom's agent to change her mailing address to mine. She said that she couldn't do that because the actual company (which will remain nameless) would raise the rates substantially on an unoccupied home. At least that's the way it is in NYS. Her agent was able to reduce her premium as a favor to me, and I pay her directly instead of the company. She knows that I'm in the process of selling so she's been very helpful in working with me.

Thanks for all your heartfelt support. It means so much.

 
Old 06-12-2008, 03:39 PM   #5
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Re: Extensive Leukomalacia - MRI Report

Martha, I've never heard of this diagnosis before either. I searched it on the net and all I come up with is mostly newborns that are deprived of oxygen at birth. There are a few sites that mention the elderly and leukomalacia, but not too many...the ones I found were definitely suggesting dementia/Alzheimer's.

I guess it's basically saying it's non-functional brain matter. Apparently, we all have some as we age, but doctor said it was quite extensive with Mom, and it was only going to get worse, which I know of course.

But, I'm doing fine...I worry more about my siblings and my aunt...they are having a hard time with it, yet I'm the one who is the closest to my Mom..I seem to be able to handle it. Perhaps watching my Dad die from cancer and the horrible pain he was in toughened me up at the young age of 23. At least my Mom is not in pain yet; she still loves me..if she doesn't call me "mom" she calls me her "darlin' " so I know that I'm still very much alive in her heart and mind.

Thanks much for your kind words, I appreciate it so much!

 
Old 06-12-2008, 06:15 PM   #6
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Re: Extensive Leukomalacia - MRI Report

Yes, sister 2 has the POA and she's with me ready to sale both the car and van. The insurance, so far, has not a problem. Both the house and the cabin are on the same policy and they don't seem to have a problem with the fact that both of them are now basically unoccupied. I guess I will know if this changes when I get the next bills. I have touched base with sister 2 today about both the van and the house. We understand that she has the signature that is needed. If agreement doesn't come sooner rather than later it might be the biggest blow up yet :::sigh:::

Love, deb

 
Old 06-12-2008, 07:04 PM   #7
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Re: Extensive Leukomalacia - MRI Report

Deb, you have such a way of putting things in perspective; that I'm sure if you sat down with your sister and poured your heart out, hopefully, she will understand and let the house go.

Just the maintenance alone, where I live anyway, is what gave me the ultimate push. I can't take another season of leaves and snow. My brother is 49 and I'm 53..I am tired of doing yard work other than my own!

Perhaps someone in the family is interested in the house? I asked my brothers; niece, and son if they wanted the house and nobody jumped at the chance so I had to move on for my own sanity. I gave them plenty of time to decide so now the ball's in my court to do with it what I want.

Maybe you can reason with your sister and tell her that in all reality, it would be for the best.

If you want to use me as an example, feel free to. My Dad built the house with every pound of that hammer...it hurts, but he is gone and Mom has not been able to live home for 9 months now. It isn't going to change...ever!

Best of luck, Deb. I'll pray for you tonight and hope you can reach an end to the turmoil you're going through regarding the house.

Nobody wants to say goodbye to the house they grew up in, but sometimes it's better to make new memories in the house your in now, and that's what really matters.

 
Old 06-12-2008, 07:22 PM   #8
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Re: Extensive Leukomalacia - MRI Report

Sunny.... I need the prayer where this is concerned. It is not just the house. It is the entire relationship between sister 4 and I that needs repair. I have sat down with her and I have written extensive e-mails to her repeatedly. Just today I sent her e-mail explaining that we needed to lay down the old baggage and start anew. I explained that I had spent a year doing exactly what she is doing now and I understood how she felt. That we needed to discuss the topics and not consider disagreement as personal attacks. I told her I didn't want to go three rounds with her in the parking lot while I was there this weekend. I didn't want to feel hesitatant about bringing up issues because I never knew what chaos would rain down because I did. I apologized for any wrongs she preceived and accepted my share of the blame for the situation. I told her I was willing to go foward and build a new history based on cooperation. I told her I was not her enemy but could be her best friend and asset and truly wanted to work with her.

What I got back was a statement that my e-mail was "rehearsed". (she hates the way I write and has criticized it repeatedly) That I didn't have a clue how she felt. That she didn't understand what my problem was. Then she told me everything I was doing wrong and that she had done nothing wrong. She said there were bigger problems than her.

I know in my heart what I have said to her repeatedly is the right thing but she insist on hanging on to her old baggage. I don't know what else to do.

Love, deb

 
Old 06-12-2008, 07:49 PM   #9
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Re: Extensive Leukomalacia - MRI Report

You write beautifully, Deb, don't ever doubt that. Maybe she just needs time to work this out in her own way. I'm sure she loves you, how couldn't she?! I wish I had a sister let alone one who is as compassionate as you are.

Try to keep communicating with her and maybe she'll come around. Hugs and prayers to you tonight!

 
Old 06-12-2008, 08:44 PM   #10
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Re: Extensive Leukomalacia - MRI Report

I don't know. Maybe I am just getting bitter and tired. But I have a personal relationship with my Savior, and I talk to Him every day; sometimes many times a day. And if there is forgiveness to be passed out, I am first of all happy I got some of it from Him, and glad I have the ability to forgive others.

That said, I gotta tell y'all that I am having a heck of a time "forgiving" my brother for taking dad's money, giving nothing in return, and then not even buzzing out here to see this old, sick man.

And Deb...I would be soooooooooo P.O'd at #4. I think the rest of you are more woman than I am. Every one of you. Really. I am quite serious. Because I KNOW what y'all do. I KNOW what it's like to care for someone that is 120 lbs of 3 yr old. I KNOW what it's like to be so worried - so tired - so confused that you can hardly think. And for our siblings to NOT be there - Johhny on the Spot - for us is reprehensible.

I am truly a really kind, nice, warm and tender person. I still take spiders outside rather than kill them. Really - I am a nice woman. BUT. I have had it with the siblings that think they can boss us around, undermine us or ignore us.

Shame. Shame. Shame.

...deb

 
Old 06-12-2008, 08:48 PM   #11
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Re: Extensive Leukomalacia - MRI Report

And by the way, Deb - you are one of the kindest women I have ever met. And you write like a total scholar, and I love reading every word you write. #4 clearly has zero idea what she's talking about. Please don't internalize anything #4 says that is negative. You don't deserve that.

You rock. You and the rest of the women (and men?) on this board.

...deb

 
Old 06-12-2008, 10:32 PM   #12
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Re: Extensive Leukomalacia - MRI Report

This board rocks! I dont internalize what she says. I have become very efficient at ignoring the crap and keeping what is beneficial. Right now I am focused on you gals because you are definitely beneficial to my sanity and well being!!! I have tried to "fix" the relationship between sister 4 but have come to the conclusions that it is hindering progress so I am just going to proceed. If she doesn't like it... oh well. Right now my focus is Dad, the potential UTI, and helping Mom deal with the reprocussions. When I get home Sister 2 and I will proceed with the other things that need to be done like a visit with an elder lawyer and readying the house and van for sale. If nothing else, what I have been through, has made me a stronger person. I have finally figured out that it matters not what people say or think about me because I have the choice of how those comments affect me. Knowing how they think just allows me to move forward in the most effective way.

Skimp, I left my anger behind a tree wrapped in a towel. It dosen't affect the person you are angry at but it does fill you with negative energy and drains away your positive energy. It's not worth it. Instead I just feel sorry for them. What a sad way to live a life. It's a life lesson in what NOT to do.

Thank you Sunny. I appreciate that affirmation. I won't give up but I have put it in perspective. Maybe one day she will understand. Until then life goes on and I intend to suck the best out of it.

Love to you all deb

 
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