Survival means let's disassociate

[Tom's Support]

Oh, I really hate who I have had to become to survive this. I hate that I will BE the survivor. I hate that the person I thought I married has really never been there. I hate what this is doing to my children. I am glad to have outside help living in to gauge normalcy for us -- as if -- she has had no charmer of a life either...

AAARRGGGGHHHH!

There are only threads of things in front of me, I have had no spinning or weaving skills and feel compelled to make something of this mess. If nothing is to be made then how are ANY of us going to survive this household?

Outside of home I am a real person with education and opinions that are valued, I solve corporate problems, save money, am an absolute asset to my friends, associates and acquaintances... I am a marvel, a wonder and a great contributor to the better good.

At home, I am pathetic, a blithering idiot, a waste of oxygen, a pain in the proverbial butt etc.

I have no idea what happens during my drive to work or my drive home, but I seem to be two complete opposites of humanity.

Away from home I wonder what my problem is. At home, surely things are not that bad.

At home, I wonder how I remain contracted by my clients (bookkeeping, reflexology etc.) if I am such a waste of space.

FTD has killed me.
FTD has killed my son and my daughter and is now killing my future daughter-in-law. All because Tom, on his game, is a noteworthy source of intelligence, a mechanic extraordinaire, someone to listen to and to adhere to. The other Tom, however, is Satan's cruel left and right hand, designed to crush ANYTHING and ANYONE in its consciousness. I cannot protect any friends, family or even myself from this atrocity.

There is nothing gracious about ALS, FTD or any other disease that gets in the way of relationships.

We are all dead and there isn't enough money to bury any one of us with dignity.

Beware! You may get sucked in too~!

From here I pray for all of you because there must be hope somewhere. I have to believe that someone will get through to the end of this and maintain sanity, with-hold love and the sanctity of humanity.
God, what have you done?

I believe that FTD has preceeded ALS by many years, my life and testament will signify this. I have lived 24 years with the TWO FACES OF TOM.
With the ALS box closing in on Tom he is being taken over by the FTD demon, lashing out more and more, the living surviving folk being his natural enemy. Our fault that he is losing control, strength, meaning etc.
What a load of BS to bear.

I am yearning for the end of this so that we can grieve properly. Until then, we are only ever half way to the end, half way to the relief, half way to living again.

THIS IS GOING INTO MY BOOK.

 

[brooksea]

Just know, that I understand and also believe that FTD preceded ALS in Don, only I was unaware of what I was dealing with. Hadn't a clue in the world! It only became apparent when I dealt with him 24/7, during the last year of his life, when I researched symptoms. It seems Tom's case is much worse than my husband's was. I am so sorry for your situation.

I hope you can hold on for the sake of your kids. I know my son also has issues now because of this and it is difficult to deal with... He is so very angry at his dad, me and himself! I can only hope "time will heal all wounds."

 

[Miss]

I've come to the conclusion that time doesn't heal any wounds, only God does.

 

[Tom's Support]

Thank you Missy. God uses time to heal. Time involves distancing, reflecting and concluding, tools God uses to bring us to fulfillment, for sure. Thanks too, CJ. I know you have lived a parallel life and I am cheering you on to a good survival because if you make it, then there is hope for those of us who follow. I am so sorry for your battle and especially for your loss. Words seem weak, but the emotional support is strong.

At least here we can find complete understanding and empathy. That is the greatest blessing and one that I am very, very grateful for.