Monday, January 17, 2011

What Do You Want To Hear?

As readers of this thing, I would lkei to know what it is you want to hear about from me. I feel like I have reached a point on constatnntly reapeting myself. True or not I do not know.  My wife informs me we are in 2011, well I still am back in 2009 I think, because time does not seem to have moved forward for me or I have not gone with it. Maybe that is good, you all are getting older and I am staying the same. What a horrible thought that means I have to stay where I am at. I do not like where I am at, i dont even know when someone comes or goes in my hourse or even who is here at times. Ideas, thoughts whatever from you would help.

I did write to Dr. Phil to try and get a show on those of us who suffer, not the medical or caregiver or research side, but us the Walking Dead to hear our voice, but like the answer my wife got from Oprah, silence nothing back. I guess we are not worth talking to or about. No wonder so many actually just give up and call inside not to be heard from again, I can relate to that now, not before but now I can. We are throw aways no doubt in my mind any longer. Even my friend Dr. Sivack whose blog I invade at times no longer writes me, eveb those who are with Alz Org that are supposedly friends or want my involment , nothing just the quietness of silence. But people have their own lives to live and deal with. I have grown tired and wiery, take care my friends.

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


Anonymous said...

Hi Joe,

You keep writing about being ignored, not worth talking to or about, being a throw away.

You may feel that way in your head, but AD is very much on the minds of many people.

I heard it is the second most feared cause of death in the US now (behind cancer.) It didn't get that way because no one knew about it. It isn't there without researchers, the pharmaceutical companies, and our government spending a lot of money to try to understand more and develop treatments.

Sadly, none of this is going to do you any good. Nor my grandmother who died of it 4 years ago. But maybe it will help me, your and my children, grandchildren.

We talk about it and work on it every day, even if you don't think so. I fear my mother will develop it, and I look for clues in your experience that will help me understand what she will go through, do what I can to relieve her suffering as much as possible.


Anonymous said...

To answer your question, I want to keep hearing about how you are feeling - this gives me a window into my Dad's life who is suffering.
I would also especially like advice on what will help my Dad = how I can talk with him, make him feel safe and OK, help him with memory(?), anything to help him. I know you have your needs and I respect that but I want you to know how much you are giving to the larger AD community - we are all struggling with the mysteries together and you are a very rare source of info: sharing what you are thinking, feeling, as best you can. Keep up the good work and God Bless You!
- Margaret

Anonymous said...

Joe, One other thing: you may not know it but a TON of people read your blog when you post. You may want to see about installing something on the site so you can know more info about who reads it. The internet is kind of odd communication because so many people can take take take from it (i.e. read what you have to say) without giving back (i.e. thanking you). I thank you for the bottom of my heart and wish you the best.
- Margaret (again)

NewKidontheBlogg said...

Hi Joe!

You raise me up by writing here. I want you to journal about your life--each day--what interests you even if it only interests you for a few minutes. It doesn't matter if Oprah or Dr. Phil interview you. Our life isn't worth something by who interviews us. Tell me about the people you love and who love you. Show your strength rather than kvetch, but complain if you must at times. Who are you kvetching to anyway--people who haven't given you attention or God for giving you an awful disease? When I visit your blog I don't want to be talked down to for all the people who haven't visited your blog.

My husband doesn't talk about his Alzheimer's at this point. I am glad he is happy. I have decided to not ignore his diagnosis and so put it in our last holiday letter and when we took our dog to the vet, I told the vet in my husband's presence that my husband has mixed dementia (Vascular and ALZ).

You read my blog about my husband's dementias because we correspond by e-mail and I am grateful for that. You were aware that we were in a horrible crash with a DUI driver. Thanks for reaching out to us about that crash. I look forward to reading your autographed copy of your book sometime this next month.

Take care, Joe!


Peaceful said...

You are teaching alot of people here.
I read with interest when you speak about how you feel in your head,changes in 'reality'- it helps me understand.
I go to other forums for help with care taking- I come here to understand what is going on 'inside'.
Thank you.

Jennifer in Canada said...

I need to read what you are writing to prepare myself for my father down the road. Even if it is complaining about how the disease is making you confused or how you feel people aren't caring- that IS the disease and it is SO VALUABLE for me when you express yourself. Thank you.

presstoe said...

You are not in your mind alone. Dr. Phil and Oprah suck anyway. I found you thru the HBO documentary and I love your blog. I cared for someone with AD and although I know that I cannot fully understand how you feel, I can know you from my own perspective having been around good people who had the same problem.

Thank you for sharing so much of yourself with us.