kmg126

Hi,
This is the first time I am posting on any boards regarding my mom's Alzheimers. I guess I am just looking for a bit of support, as we saw this coming on for a long time and my maternal grandmother suffered with Alzheimers as well.
My mom is really young, only 64, which is especially scary for me. I'm almost 45 and have two small children (6 & 1) and worry about what if's in the future. I noticed that my mom was having alot of forgetfulness back in 1997, so 9 years ago when she was only 55yo. Through the years it got worse and I told my dad and brothers all the time, but they were in denial and always said they didn't notice anything. Up until about a year ago, my mom was still coping pretty well. Staying home by herself while my dad worked or went out of town on business. She would cook and prepare small meals for herself, though it would take hours to do so. She lost alot of weight (was already small at 115) b/c I think she would forget to eat. There were sticky notes ALL over the house and she was seeking out Alzheimers groups and reading material all the time. She was even driving a bit still. She ultimately made the decision to give up her license and car early last year. She was finally put on Arocept about 5 years ago.
W live in New Orleans and were hit pretty badly by Hurricane Katrina and my parents lost their house (almost rebuilt now a year later) and she went downhill FAST. They moved into a small (they have a 5000sf house) townhouse and it was very upsetting to her. They lost most of their possessions in the storm, so ended up with new furniture and she was really put off that this was not her "stuff" We did salvage pictures and some momentos, so those she recognized, I think. Anyway, my grandmother had Alzheimers and died at 72 years old with it and I spent alot of time with her so I thought I was prepared for my mom, but her disease is VERY different. My grandmother could carry on a pretty decent conversation with you, even though she constantly asked who you were and thought that she was a young girl, or that her siblings were still alive. My mom cannot even communicate. The doctor said that the part of her brain that is affected is killing off her communication skills. She rambles nonsense and stutters and makes no sense at all. It has really kept all of her friends (she was very social and participated in endless groups) at arms length. Even though they sympathize and spend time with her and my dad on the weekends, they don't try to talk with my mom at all. People she has known for 30 years don't have anything to do with her, not that she really realizes it, but it's sad. She will get lost in her own world right in the middle of a group of people and sit there saying nothing or rambling, humming etc. for hours. She has accidents everytime they go anywhere and my father, who I never thought would handle any of this, turned out to be a saint, but he gets to his wit's ends. He keeps taking her out though to socialize, hear music or eat dinner. He's not embarrassed at all when people stare at her while rambling outloud. But she is getting too much to handle lately and I think those days are nearly over where he can take her out. My brothers finally realize how bad things are now, but they refuse to talk about it or really deal with it, which puts it all off on me, when my dad just needs a long break. I expected that I would step in and take care of her at some time, but with two small kids it's tough, especially for days on end when my dad needs to go out of town. I need to be home and my mom has a hard time coping completely out of her enviroment (though now she cannot find her bathroom in her small townhouse anymore either). I took her to her neurologist early this year and he took her off of all medication. Said that the side effects (stomach problems) were causing more problems for her that the good effects of the drug. He said that he doesn't believe that Arocept or any of the other meds do a damn thing for Alzheimers anyway (heartbreaking to hear that from him). She is in an adult Alzheimers day care M-F and the nurse there really wanted to see her on Arocept and Nmanda (sp) together and thinks they work wonders, but both of her docs refused, saying her Alzheimers were too severe, so my dad followed their advice. I pleaded with my dad to at least look at Alzheimers living centers and get her name on a waiting list, otherwise, he may need it in the future and nothing will be available. He did finally put her name on a list and it's a gorgeous place, but I think she is still too aware of what type of place it is and he could never get her in there willingly. He won't put her there unless she agrees to go, I'm sure. She doesn't know who anyone is, me or my brothers or our kids, and knows my dad, but I doubt that she knows he is her husband. She calls him her buddy, when you can understand her.
Again, I guess I am writing all this b/c I need a bit of support...afterall it's my mom and I am losing her. There are so many times when I just need to call my mom and I stop to remember that I can't. I think this is making the fact that I am losing my mom a bit easier to handle in that, she is no longer recognizable as her former self. This small, frail woman who makes no sense, can't be my mom. I watch videos from just a few years ago and the differences are insane. My biggest fear is that this will happen to me as well. It struck my mom so early, 55! When I am 55 my oldest will only be 16 and in high school. My youngest, only 12yo. The worrying is something I try to push aside praying that something will be done about Alzheimers before my brothers and I might be affected. And long before our kids could possibly be affected. My mom also has a sister that does not seem to be affected, who is older than her.
I guess writing all of this helps me a bit just to vent a little. If you got this far, I really appreciate you reading it. And I appreciate that these boards are here too!
Thanks,
Karen