Saturday, June 11, 2011

Getting SStuck In time.

I am becomming more confused eac day. I sit here to write and just draw a complete blank. I feel that thi journey is getting rather rocky and bumpy now. When i started this blog, which seems like centuries to me, i was filled with a fire and a passion that was overwhelming me. You all know how i feel that we who suffer from Alzheimer's, Lewy Bodies, Parkinsons, Frontal Temproal Dementia, Vascular, etc. do no have a voice for us, i still feel that way, i do not want some so called expert, caregiver, reasearcher, etc. speaking for me and telling how terrrible this is and the problems and heartbreat they feel caring for us. Hell that does not put a voice or a face to us, to u yes, us no. Like it or not, WE hold the key to this disease. We have the answer, not you, we live it, why are we not asked, why are we not the experts, why is it not us that talks to the media and the big stars to tell the story? You do not know this side at all.  When it started for me it was small slices of my life taken each day, those slices have grown steadily until they are now steak size. The passion is still there to tell the story, but the fire is just a glow now. I feel like i am talking to me on my left side, i am deaf in my left ear, i feel like my blog has lost it's thunder and no longer reaches out and is heard. Yes i hear from folks once and awhile but not much anymore, I cannot begin to tell you how lonely it is inside my mind what is left now. I cannot realy even talk about things much anymore. Hell the fire and fuck the world attitude  has tempered down, I am understanding how the others that were in the hbo documentaroy felt and relate lmore to the world they became to know.
My niece died thursday, she was in her forties, i feel for her husband and three sons, but more for her mother and father, see we are to die before our children not out live them.
This is becomming way to much, there are things i want to do, but i forget them or just plain have no motivation to do them. I rarely sit by my ponds any more, my interests seem to becoming less daily about anything.
Well until i remember you are out there again take care of yourselves.

God Bless & Keep You & This Country of Ours!
joe

6 comments:

nollyposh said...

...The journey is hard but remember statistics do-not apply to the individual... (((Hugs)))

NewKidontheBlogg said...

So hard to relate to time for my husband also. We have started going to a gym and planning activities together--mostly indoors for the summer.

When I am not home he wants a checklist. I was home most of today, but he still wanted a checklist. He takes notes on what is coming up in the future.

We should all live in the moment.

Hugs and prayers,
Carol

Heather said...

How to convince you your voice is still important. Only you can show us what this is like and have been doing a wonderful job of it. Please continue on for as long as you can. You are making a difference.

Sandy said...

It is hard to keep a blog going, but I agree with Heather that you are the one who is able to describe what Alzheimers is like from the inside. My mother isn't no longer able to express herself, but I take great comfort in reading your words and hearing your anger!

C and D said...

We are listening, Joe. D is a friend living with Alzheimer's Disease and shares a lot of the frustration and emotions that you feel. He is aware of the disease and also experiences the disinterest and heartbreak of losing so much of his life. He currently lives at a Sunrise Senior Living in Kentucky where I work as Life Enrichment Manager. We find your words elightening and refreshing.

Anonymous said...

Your blog is an amazing insight and a credit to you!