This Change

This Change

I have been through many dramatic changes in the last decade of my life both extremely happy and heartbreaking. I made it through each one, but I’ll be honest and say I have no idea what I am supposed to do with this news that I have dementia.

I left home to get some space and clear my head. The silence of not having my kids constantly making noise only makes me think think more. My wife says I am in the process of grief and in denial. Who wants to hear these words and reach acceptance? I’m supposed to wake up and be ok that a day is going to come that I have no idea who my kids are now? What the hell is that?

I tried drinking it away. Now I’m f*cked up, forget I am paralyzed, and wake up on the floor hungover thinking about Alzheimer’s. It’s great!

I can’t face my own daughter who loves me more than anything and doesn’t understand that this is something dad can’t fight. When you have kids you swear that you will do anything in this world to protect them from pain. What are you supposed to do when you are the source of their pain? How does your life turn into a nightmare when you had everything?

What am I supposed to do? Nobody told me that this was a possibility from having a TBI. I am already missing so much of my life since my accidents that is only captured in journals. Now you’re telling me that somehow I need to make peace with this somehow and that I won’t know my own family? I won’t really see my baby graduate high school or college? I won’t really be there for when her first boyfriend comes knocking? Somebody please tell me how I am supposed to find a way to be ok with this when I am 36 years old and my baby is months away from turning 2. My oldest will be 16 in a few days and I’m wondering will I even see her graduate or will my wife be showing me pictures explaining to me that’s my daughter!

I have lived a lot in my 36 years, but not enough. Not nearly enough. I want to watch my babies grow up. Is that too much to ask for?  

1 reply
  1. Barbara Scruggs
    Barbara Scruggs says:

    You can only do the best that you can do with what you have. Take as many pictures as you can, add captions, keep a daily journal, be as active as possible, eat as healthy as possible, stay as engaged with life as possible for as long as possible.
    Try to not worry too much about the things you don’t have any control over, focus on the positives as much as possible,
    Maybe one day there will be a cure for paralysis and dementia, I truly pray that there will be and the sooner the better, meanwhile you can only do so much, and I suspect extra stress of worrying about the future doesn’t really help matters at all.

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