So funny, I tell my son that I am a old person in a young person's body. I chuckle at that, what ese can you do? Cry? That might make you feel better for awhile but when the crying stops, I am still the same.

I am seeing the anger of these disease in my son and it breaks my heart. He is even angry at God. He doesn;t understand how such a loving God can let such a horrid disease fall upon his mother. Who knows, maybe it is payment for something I did when i was younger. Honestly, I don't think that but rather think that God knew my strengths and placed me here to help others through this journey even though as I progress my son and I would struggle as well. Does that sound crazy?

I have met many, many or should I say hundreds of families along this journey, I hope that I have inspired them and given them hope that even with this disease, you have alot to offer to society. Your life isn't over unless that is the path that you choose. Even as i progress I hope to give hope to others as giving up is not an option. We were all given life bu the Almighty for a reason. And I know we ask, was it to suffer through this? No, it was to educate others, even doctors and give hope to others. Some don't suffer as long as others or truthfully they did as they were just diagnosed later in the disease process and they suffered for many years alone.   

If I could give one person hope today, I would say to them that your life isn't over, you still have much to do and live for. Live in the moment, enjoy your family and give them strength as they go through a long grieving process, I am finding that with my own son.

Tracy

Tracy,

I respect your beliefs, but I also relate with your son about his beliefs about God.  He is right why would a loving God allow such a horrendous and disheartening disease like Alzheimer's to exist.   I also have other very personal reasons why I no longer believe.  But I see your point we can still help other people.  That's what the world should be about.

John

Tracy and John,

I believe that we are here to help each other get through this dreaded disease AND to educate as many people as we can about our illness.

There are still many people out there that are clueless about EOAD/FTD and other early dementias.

Some days I have more energy than others.  I keep trying.

John, there are many dreaded diseases out there.  Ours is one of them.

Hang in there, y'all.

Peace and Hope,

Lisa

Tracy & John,

Tracy, I am fairly new here and am struck by your story...it seems as though you have given lots of people hope along your way! Good for you.  This site has truly given me a little light in that I have been able to somewhat connect with others going through similar things.  In reading your story, you are the same age as me.  I too have children at home and know how hard this is on all around us, as well as us.  Hope to hear more from you.

John, you said it so well regarding the whole God issue and could not agree with you more.  

Every time I look to chat, there is no one there. 

Hope all are enjoying your day! 

Hi Frustrated, 

I know there ids a chat room just for those of us with the disease but it is seldom used.

Why don't you set up a time, several days ahead that's convenient for you. If you are primarily interested in speaking with those who were diagnosed early, only post here.

Go to the chat room a little early that day and wait around awhile.

It may take a few announcements and waits, but it can happen.

Large groups don't seem to work well for us, but a group no larger than five would be ideal.

Is there any particular thing you would like to talk about? Announce that.

And good luck.

Tracy, Your continued courage is writing about your feelings and those of your son are wonderful. It is a hard time in both your lives. How are things going with your brother?

And you can tell your son, that you still firmly believe what you believe, but that you do respect and understand what he's feeling. 

Mimi S. & Myriam, 

The chat thing does concern me a little as words don't flow too well,

especially to make sense of what I'm trying to say.  I was just going to stop in

and see what people were chatting about, but I do know big groups are

difficult for people with Dementia.  I guess I was just too exited to have found

others with similar issues  

Nothing wrong with trying it out. You might want to try following my advice, above. Those of us with Ad don't normally hang out in the chat room.  

I do believe Iris does. Ask when she'll be on. She's a west coast person, so be sure you both include a time zone when you post a time.  

And some of us have trouble translating, so post for example: noon, Eastern time 

              11 AM, Central

              10 AM Mountain 

              9 AM Pacific

It is not unusual for a person to have a crisis of confidence in their belief systems, especially in such dire circumstances.  Your son is young and one must continue to just love and lead by example as usually no amount of reasoning and coaxing usually reaps benefits.  He will work thru this with love and in time and as his emotions mature.

I went thru a period of questioning, questioning, questioning.  I couldn't get "it" all and it gave me a headache.

BUT - one day, I was out in the flower bed with a small hand rake scraping at the dirt around some flowers. 

Just as my hand rake came down, a tiny bug walked right past, I missed striking and killing the bug with my hand tool by half a hair.

The bug just kept walking, he was unaware of my presence.   "Wow!" I thought, "That little bug has no idea how close he came to dying."

I realized that I was far too big for the bug to see me.  His eyes were far too small to be able to visualize me and even if he could catch a teeny glimpse out of the corner of his eye, his brain was far too small to grasp and understand how complex and amazing my capabilities were.

Then it hit me - I am like the bug.  My eyes are too small and my brain is too small to fathom God's wonders and how it all works, I don't have to figure it all out, it just is.

After that revelation, I no longer ruminated over all the questions I had popping up in my mind.  So, even a tiny bug can teach a very large lesson.

Love,

Johanna C.

Johanna,

I'm not an atheist by any means.  I am more of an agnostic, and I did like the example you illustrated.  It does make good sense

John.

Thank you for sharing, Johanna.  I've had the same thoughts.

Iris L.