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 A place to vent 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: A place to vent
Bobbie, here's what I've found.
There are a number of scales regarding the progression of dementia. I'd really recommend reading Caregivers: Drowning in a Sea of Cognitive Challenges by Delaune Pollard. In the middle (about) of the book are several pages describing the Allen Cognitive Levels, which consist of a level and a mode. There are six levels and within each level, there are modes on a scale of .0 to .9. The higher the level.mode, the more cognitive function is apparent. Originally developed to define the cognitive progress of children, from infancy, it is now used by many professionals, including my mother's memory specialist (a University of Minnesota faculty member).
In the section about the Allen Levels, cognitive levels are compared to ages of children who exhibit the same traits. They are not exact, and I've found - ever since I learned about cognitive levels - that no one can be really pegged at one level. But it has helped me deal with my Mom because it put the symptoms and behaviors into a perspective I could understand - that of a child growing up.
I also ran into another interpretation of the stages of dementia. No name that I could find. It is a seven stage progression, again with some division in each stage. The numbering system is just the opposite of the Allen Levels - with Stage 1 as the best of all worlds and the lower numbers as severe dementia.
There's no way anyone can say that one is better than the other. But you need to ask your doctor what scale he/she is using. A level/stage 4.0 (for example) can mean very different things, depending on the system being used.

Ask a lot of questions. It's the best way to understand.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Jul 27, 2010 2:05 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: A place to vent
Randy, I hope you are still looking at this thread. I missed your first post, but I'm gathering that it's you who has LBD? Look at some of the other threads and you will see that there is a lot of ranting and venting going on. Where else can you rant and vent. I ripped a good one a few weeks ago in a thread about caregivers looking to family for help. And I stand by every word, even if I could have been more diplomatic. If you spend too much time on diplomacy, especially here, you lose some of the flavor of what you have to say. And your words are valuable to everyone here. We caregivers have very few ways of finding out what is going on in the minds of our loved ones. We can only make assumptions based on a lifetime together. You could be a great help to us. And maybe some of our experiences can help you get through this.

One thing I'm going to suggest, though you sound like someone who is likely to have done this already. See your attorney to get end of life documentation drawn up, especially your medical directive. Don't delay. With my Mom, we just made it before she broke both shoulders and had a huge decline. If we hadn't done it then, I don't think there's an attorney in the city who would have classified Mom as being of sound mind. Even if you've done it, review it to be sure it reflects what you want now instead of five years ago. I don't know how we would know, and prove, what Mom wants to happen if this hadn't been done. It's important. (If you don't have an attorney, look for an elderlaw attorney. I found ours through our insurance agent.)

This is a rough journey, but there are moments. Moments that you can't explain, but they are very special. I wish I could explain them. Just please understand that, just like everything else, this experience will be what you make of it. Use what you've got for as long as you've got it and look for the sweet joy of the moment.

Very best wishes for you.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Jul 27, 2010 2:26 am
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