I am just curious about how long I have iwth her. I know this may sound morbid but I live two hours away. I go and stay with her about one weekend a month to relieve my aunt and uncle who stay with her full time. I am just about to graduate college and pondering taking off some time to go live with her. She was diagnosed about 5-7 years ago and today, for the first time forgot who she was talking with on the phone and asked me "So how is Taylor doing?". If anyone has experience with this or know how long I might have, please give me some insight. I've come to terms with just about everything involved but I want to make the most of what I have.

Taylor,

My father in law passed away in 2006. He had Pic's disease and was only diagnosed a couple of years before his death. I cannot give you a time frame of how long your Granny will be with you. From my experience, all I can tell you is to be vigilant about the medications your Granny is taking. My father in law was grossly over medicated and he was in the hospital at the time of his death. Through my research about the disease I found that many patients will get sick from something relatively minor simply because they reach a point when they feel no pain or the pain manifests itself in outbursts or screaming fits. Something like a bladder infection can enter the blood stream and turn deadly if not treated. Be diligent about having blood tests and checking with ALL of her doctors about the medications she is taking.
Above all, spend time with her and love her while she is still here. If you have something to say to her...DO IT NOW, even if you don't think she will understand. Good luck. I hope I have helped.

Thank you so much azgirl! I love this site and all the info on AD I just wish there was more on Pick's even though I know it's a really rare form of dementia. Either way, thank you because any input is helpful. We (our family) has been very fortunate in being able to keep her at her home for the past 6 years and just have people come stay with her. It gets worse and worse of course but we've been very lucky - she still is pretty OK. Thank you again SO MUCH!

Taylor, I've found FTDSupport.com exremely helpful as well as this site. Lots of links.

My husband was just diagnosed 6 months ago at age 64.

Your grandma is lucky to have you! Appreciate each moment, no guarantees for any of us.

Taylor,

Here is a site that I have found info for Pic's Disease. Check it out when you have time. Hope all is well.

http://www.ftd-picks.org/

Thank you both! All the info is VERY helpful!!

Dear Taylor: Google the AFTD, (Association of FrontoTemporal Dementia), this is what Pick's Disease is.

You will find much information there. Pick's is all about behaviors. The frontal and temporal lobes is where all the behaviors lie and also speech/language.

Do LOTS of reading before you make a commitment about staying with Grandmother. My mother has FTD, just not Pick's. As time went on, it became horrifically difficult.

You are a wonderful person to take such an interest and to care so deeply. My best advice is, EDUCATION, EDUCATION, EDUCATION!

Read, read, read and then read some more. It will help you greatly as Grandmother's condition continues to deteriorate.