Thursday, July 09, 2009

Who & What Am I Becoming?

There once was a tmie I could answer that but not anylonger. I have for the last several months porued myself into trying to start some things for the family to help make their financial future better. However, I remember the comment I made in the HBO thing, Once I was a genius, now I'm not. How true, it seems that once what I touched I mad work and well, now it goes to hell in a hand basket. My thoughts seem to be of the same charge and push each other out of the way, leaving avoid for confusion. That is the disease at work and having a good time of it. I find myself much more pissy and angry now, but I try to keeep the old trap shut and carry it alone. I am beginning to understand why we in this World of Ours, just sit alot and say nothing or just wander. We no longer have a grasp on things, what is real is it, I don't know any longer. I do not want to say things to family and friends because I don't want the constant hovering or them walikng on eggs. Frankly i do not know what I want, who I really am, where I have been or am going. Things from the past seem to be from yesterday and yesetrday seems to be the past. I feel truly helpless for the first time in my life. Where do we go from here? Down the tunnel.

God Bless,


Lynn said...

Not yet you don't.

rilera said...

Joe, you are allowed to be pissy. This disease sucks. As a family member who watched this happen to my Mom, I can truly say that it was by far the hardest thing that I ever had to do. It hurt so much to watch someone I love suffer. I know that your family and friends feel the same. Hang in there Joe. I'm rooting for you.

kenju said...

No one blames you for being pissy. You're allowed. But remember that your family members love you and try not to be pissy with them.

lindsay elyse said...

like Dory from Finding Nemo so famously quoted... "just keep swimming..."

You're life is giving me hope. AD runs in my family and I'm slowly watching my grandmother leave. I wouldn't want to miss a second of it.

Be good, and take care.

colleenmc said...

I'm listening and I hope you know that you still write a heck of a lot better than most that I know. I wish I could say something meaningful to you except, God Bless you back Joe.

Annie said...

Be pissy, but please understand if once in a while your family is pissy back. Cut them some slack too. As hard as we try, us caregivers aren't all happy and light either. It's admirable that you're doing what you can to take care of your family. You're a good man, Joe! Give that lovely wife of yours a hug from me! said...

I am a caregiver also and get pissy--I'm glad you wrote pissy in there; Your blog reads of so many of the things I am experiencing, and, because of your blog, I get to read all the comments we folks post. Joe, you are serving a purpose for me and many others, know that. God bless you,
Joyce Seckendorf
Park Forest, IL

tksinclair said...

Yes, it's a bad situation. I hate this disease for you and for every one that has it. I am terrified of getting it. I imagine you daily try to create some order in a situation where there virtually is none. I think you have to, yes, sorry for the dang cliche, "take one day at a time"...keep up as many daily routines as possible. Regardless of how small. There's sometimes comfort in those things Joe. Maybe it's a false sense of order but it's something. Unfortunately as you well know entire families suffer from Alzheimers. Try to have as much meaning, compassion and mindfulness as you can (yeah I know, easy for me to say - you'll note I'm saying this from a distance way over here hiding behind a tree where you can't slap me silly) .

Joe, many of the things you are and were are still there. Okay, maybe not all of it, I get that. But there are still some challenges you can meet and a warmth of relationships you can enjoy. Are there any daily tasks that are enjoyable? Achievable? Rewarding? I know it's Herculean.

Actually, the truth is, I don't know crap Joe. I have no advice or magic wand. Just a sympathetic heart. I guess you'll have to change your standards - what else can you do?

Melville said, "Life's a voyage that's homeward bound" and you're heading home - as we all are. Sadly your path is taking you down a tunnel. A long dark tunnel. Have you given up on Organizations? Have your family and caretakers exasperated books and agencies to support caregivers? I don't know about these things. Maybe they are useless.

I wish, like I"m sure others who come here do, that I could give you hope or meaning as you live with AD. I've read and heard that many with this disease can still learn things and appreciate things. Again, what do I know? Nothing. It's just what I've heard. Your brain is damaged but it's still there, right? It seems like you're suffering from loneliness, helplessness and boredom...these things alone can kill a person and you don't have to have AD to suffer from them.

I don't know crap...all I can do is encourage you to live in the moment, something we all should do, and understand that especially through your blog you are a value to society. I think if I were you I'd stick close to plants, animals and children. Or maybe right now you're in a situation where nothing happens spontaneously therefore, BOREDOM. Maybe it's all routine. Meaningless activity will kill you too I guess. If so then you have to figure out something meaningful to do not so easy while living with AD right?

Anway, for someone who doesn't know anything I sure have a lot to say huh? Sorry bout that.

I guess I'm just "typing" out loud....sorry...

Anonymous said...

keep hope alive. you are stronger than the disease. WE WILL WIN THE BATTLE

June said...

Dear Joe,

As Glenn Beck says, "You are not alone"!

And, fellow Patriot, your brain is working superbly, since you know that the emperor/czar obamination isn't wearing any clothes!

Hang in there , Joe!


Danielle said...

I am reading this book called "Still Alice" by Lisa Genova. I cant seem to put it down. The character Alice was a top notch Harvard Professor and I see the same comments you make in this character. As my father's caregiver I see inside a little when I read this book and read your blog. Makes me feel that much closer to him even though he is gone now.