Friday, July 13, 2012

Just when you think you've got a decent grip on the handle...

Just when you think you've got a decent grip on the handle, the damn thing disappears. I honestly believed I had gotten pretty far in the acceptance stage of this whole illness stuff, until today. I had to explain to my almost 6 year old nephew that Uncle Ron would never get better, or be the guy he remembers Keep in mind, Ron's first major stroke was on Coleman's first birthday. Yeah, you read that right...we spent our nephew's first birthday in the hospital. But Coleman has memories of Ron before he got to the point he is now. He remembers playing on the floor with Uncle Ron and he remembers Uncle Ron making him laugh, among a million other things that stay in the mind of a very intelligent 5 year old. He understood what I was telling him and seemed ok with my answers, but I have to admit, saying the words...having to break them down to the simplest terms, hit me like a ton of bricks. 

Uncle Ron with Levi (2) and Coleman (5)
I miss my husband. I miss the guy that my nephews will never get to know. I miss my best friend. I miss feeling safe. I miss being a wife. I miss being a partner. Most of all, I miss the way he used to grin at me when he thought I wasn't looking. I am facing some pretty serious medical stuff myself at the moment and I don't have my husband to hold my hand. Instead, I am thinking of who is going to take care of Ron if I have to have surgery. I am thinking of the things I need to get in place. Most of all, I feel alone. I realize I no longer have someone to take care of me. He is right in front of me, but lost to me forever. 

Next month will be 5 years since his first stroke. For those of you that don;t know the entire story, Ron has suffered 29 confirmed separate strokes. They range in size, with the largest being from his last relapse in 2010, it is 3mm. We have no idea how many TIA's or tiny strokes he suffered that didn't show up. Yes, you read that right. 29 separate lesions on his brain confirmed with MRI or MRA. Ron will be 33 next month. Looking at him, you wouldn't even think he was sick. Until you try to have a conversation with him. He recovered physically to about 60-70% of what he was before. Neurologically, he is a pre teen with zero impulse control. He says horrible things he doesn't mean, like a teenager. He can't be left alone for long because he cannot be trusted to do the things he needs to do. He will leave the stove on, water running..even forgets to eat. I am his baby sitter. He will also lie right to your face because he doesn't understand the need to tell the truth. Becoming a caregiver to your spouse is a lot of work and a lot of heart ache. You have to constantly keep your anger in check because they can't help it...they just can't help it.

I miss having conversations. Ron has a condition called conversational apathy. Me just isn't able to carry on a conversation, like he doesn't know the "rules" of how a conversation works. My cats and the dog get tired of having to listen to me talk at them but some days that is better than my heart breaking because Ron cannot answer me. 

If you have gotten to this point, thank you for taking the time to read this. I will close this one out the way I typically do...Please do not take ONE SINGLE MOMENT of your life for granted because it could be flipped upside down into something you do not recognize in a single instant. This moment is all we have that is guaranteed. Live it to the fullest, whatever that means for you. 


Brandi said...

I am sorry for all that you are going through and I am here to say that my mom was recently unofficially/officially diagnosed with CNS Vasculitis. It has been a completely miserable, horrifying, scary experience for me and my whole family. I can defninitely relate to you and this is just the beginning for us. My dad has been with my mom for 38 years!!! This is life changing. I hate to say thanks for your post, but it makes me feel not so alone in this. Wow is all i can say. From all the information you share with us, you have tremendous strength that noone will ever understand. My best friend is here physically, but she is mentally not here. I wish and dream of having her back. She is my everything. My mother is by rock.

Amanda said...

Thank you for your comment Brandi. Please contact me anytime you need to chat.

Brandi said...

Thank you for blogging about it. I had wanted to start a blog of my own as I feel so alone in this. I seem to always have an unsetteling feeling in my stomach these days. I appreciate your response to me as you did not have to do that. However, it is therapeutic in a way, to be able to communicate my worries. I hope all going well with you and your family.

Amanda said...

Blogging has been very therapeutic to me. I hope you find the same.