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Billy G.
Reply with quote  #16 
Cathy,

As ACV said it effects different people differently.  What I have experienced with my wife is the "stair-step" progression.  In her case she would plateau for 4 to 6 months and then something would happen and she would drop a step.  I tried keeping a log of her journey but sometimes I would forget to enter anything and may go for months and then all of a sudden I would try to go back and catch up but most of the entry was based on what I could remember and not real dates.  My wife deteriorated over a 5 or 6 year period somewhat slowly but then she had her first seizure and after that she deteriorated rather quickly.  She had a seizure in March of 2005.  She then started going downhill rather quickly.  One year later in March she suffered from a another seizure which really knocked the daylights out of her but then she suffered another one month later and that was when she pretty much became bedridden.  I had several different agencies coming in from January through April to help out.  However, she got so bad that in May 2006 Hospice took over.  At about the same time I hired a live-in and quit using the agencies.

My wife has continued to decline over this last year and one-half.  Since all she can eat is Ensure she has lost from 180 pounds to 105 and is probably less than 100 now.  During this 1 and 1/2 year she has suffered from several more seizures.  At first they were about every month and then they went to two months between.  However, now she has gone about 5 months since her last one.  She makes no sounds except when she is uncomfortable or there are loud noises.  Sometimes she will laugh if I and/or the live-in are laughing or sometimes when she hears laughing on the TV.  Also, she will scream if there is loud yelling or screaming on the TV.  I do have a TV and a radio in her room.  The way I have her positioned though she can't see the TV but she can hear it.  If I weren't so cheap maybe I could buy a wall mount and put the TV in a different location where she could see it.  Otherwise I would have to turn her bed around and then she wouldn't be able to see outside.  I don't know which is more important. 

Since your mother is older it is hard to say how the disease will effect her.  She could last for a long time or she could start to deteriorate more rapidly over the next few years.  It is really hard to say.  Since my wife contracted this disease so early in her life it has been substantially more devastating.  Her progression has been pretty fast.  As best we know she was about 48 or so when things started to go wrong for her.  She just turned 57 and is completely bedridden.  So, in less than 10 years she went from a fully functional adult to basically a "new born" infant needing 24 hour care.

I don't know that this helps you and I am sorry if it doesn't.  Since your mom isn't facing the same conditions then she will probably digress differently  Hopefully, it will be a slow process but at the same time the slowness will just prolong the time and amount of care she will need which can be a real drain on you.

Billy G.
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Cathy w/a C
Reply with quote  #17 
Thanks again Billy G.  I did do a little reading over the weekend - there is so much that is still not known about this disease.  I'll just have to wait and see how things go. Thanks again - Cathy
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Billy G.
Reply with quote  #18 
Cathy,

There are a lot of websites, books, etc that can serve as a good source but as you can imagine none can tell you the specifics about the disease because there still is little known after all these years.  As you can imagine, since it typically effects only the elderly there isn't much money in it for our medical society to do a lot of research.

At first I did a lot of reading on the subject and read different sources about all the different types of disease.  With my wife I finally narrowed it down to either "early onset" AD or Picks but as I said unless I was willing to foot the bill for the testing none of her doctors would authorize the test to find out for sure due to the cost.  Of course, there are the 7 stages of the disease but only a trained professional can tell you for sure what stage a person may be in.  And there are few trained professionals available to most patients and families.  Especially not here where I am.  I took my wife to the Mayo Clinic in Arizona where there are suppose to be trained professionals and the only result I got was confirmation that she has Dementia.  So, all my knowledge is first hand on-the-job.  I hope you have better luck.

Billy G.
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susie
Reply with quote  #19 
I am new to this and am finding this harder than I would have thought.  Family feuds, hot tempers, the never ending unanswered questions from Dr's etc.
How do I help my father who is so sure that medicine put his 76 year old wife in a condition such as dementia?  How do I prepare this man who is very healthy and against medicine to understand something like this?  I am thinking this could go on for a long time.  Does anyone know a book or advise as to help him understand that she may not (will not) snap out of this and be back to normal?  Most likely get worse.

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Veronica
Reply with quote  #20 
Quote:
Originally Posted by Billy G.
Hi all,

I know the latest discussion in this thread is about the chatroom.  However, the thread was started by Cathy w/a C and and I don't know if anyone answered her question or not but thought I would try.  I may be way off from what has happened already but oh well.  Maybe she has already gotten the answer she wanted.  If that is the case then Cathy, and all others, please forgive me. 

Cathy asked if Alzheimers and Dementia are the same thing.  My answer is this.  My research has resulted in the following description.  "Dementia" is the disease, the cause can be one or more of the following.  It can be Alzheimer's, it can be Picks, Lupus or several other brain degenerating diseases.  Without specific testing it is hard to know what the cause is.  My wife has Dementia.  One doctor referred to it as "Early Onset Alzheimer's" another doctor referred to it as "Picks".  Both of these can effect a person at an early age.  My wife was 48 when the symptoms first started.  None of the doctors locally nor at the Mayo Clinic in Scottsdale, Az have performed any testing to conclude without question what has caused her Dementia.  They all agree it is Dementia with unknown origin and they all have their theories but no specific answer.  I have been told the only way to know for sure is to have a PET (Positron Emissions Transivity) done however, none will agree to doing it because it is expensive and the results won't prove anything different than the fact that she has Dementia.  Hence, I will always wonder what is causing her brain to die and what, if anything, in the past may have led to this situation.  After about 9 years she is totally bedridden and cannot do anything for herself and there are no sounds unless she is uncomfortable or there are loud noises, then she will scream out.  At this point she is just existing.  I have her at home because of other issues relating to others lack of concern for her care.

Sorry for butting in.  It seems I am always coming in at the end of everything and missed everything up front.  I saw the thread and noted that there were no responses relating to the original topic of discussion and thought I would add my 2 cents worth.  Again, I am sorry if I am just repeating what has already been discussed.

Billy G.
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Bre'
Reply with quote  #21 
My mother has been diagnosed with Dementia. It is difficult for one caregiver but I do what I can. Nursing homes are not an option. I am so happy to have a site where I can share and get information for us.
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Mimi
Reply with quote  #22 
Quote:
Originally Posted by carol ann

How do we start ahi chat? 

Hi
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