This is not how it was supposed to be

That's the phrase that runs through my head on and off, especially on the days that I'm not coping as well.  Most days I try to just go with the flow and if not enjoy, at least face the new normal.  But sometimes those feelings of "this is not how it was supposed to be" still creep up on me.

Seventeen and a half years ago, I married the perfect man.  I always wish the people who met Tim "after" could see what he used to be like.  He was witty, fun, gentle, generous, social, extremely orgainized, helpful, and a great conversationalist.  When we used to go to a party where we didn't know very many people, Tim would spend the whole ride home telling me all about the people he met - where they worked, what their hobbies were, what they liked and disliked.  Even if I talked to those same people, I never would have had all of the information he had even if I spent a week with them!  He had this way of making people feel like he was truly interested in everything they had to say even if it wasn't something he would normally be interested in. 

Days like today I find myself missing the "old Tim" so much!  Not that he did anything wrong, mind you, he was just as polite and easy going as ever but sometimes I just wish I could have even a day of what it used to be like.  It started off today with getting him up early so we could head out a little early (due to the snow) for his appointment with the neuropsychiatrist at MGH.  I don't know if it was the early hour or just one of those days for him but he required constant verbal prompting to get through showering, shaving, putting on appropriately warm clothes for the day, and shoveling the deck off.  Luckily the roads weren't as bad as expected and we got there without too much trouble.

When we got back home, I asked him if he wanted to come out to UPS with me to mail Emma's tablet she got for Christmas back to the manufacturer due to defects anad then on to BJ's for some shopping.  He likes to get out so he said yes he'd like to come.  While I stood at the counter filling out the paperwork for shipping the tablet, Tim proceeded to wander all over the UPS.  The man waiting on me kept looking over my shoulder at him with an expression of "what is with this guy?" written all over his face.  I'm always uncomfortable in these situations as I don't just want to blurt out "he has brain cancer, all right?"  I finally sent him out to the car and told him I'd meet him there.  Imagine my surprise when I came out and he had pulled the car up in front of the store!  He's not supposed to be driving!

Next was BJ's.  Tim was pushing the carriage while I was getting the things on our list.  Quite frequently I would turn around from the shelf with a heavy item only to find he was already clear down the other end of the aisle heading into the next aisle.  I finally took over with the carriage and had him grab the things we needed.  While I checked out at the register, Tim once again wandered around the front part of the store.  He's just completely unable to just stand and wait with me.  And today it was getting to me!

Time to load the car.  I opened the trunk and Tim says "you got this?" I patiently said "no, I could use your help putting things in the car."  He stood there for the longest time holding a few items from the carriage while I loaded things into the trunk.  He finally said "Should I load some things into the backseat."  To which I answered "I think it would be easier if we just put them all in the trunk then we'll only have one place to unload from."  He replied "exactly" and immediately began to load into the backseat.  I tried to reiterate what I had just said but he just continued what he was doing.  I find this fairly often now.  He'll ask me how I want him to do something and then proceed to do it another way.

I sincerely hope that it doesn't just sound like I'm venting.  It just amazes me sometimes how different my life is now.  And that's when the phrase enters "this is not how it was supposed to be."  Maybe it's the fact that I've spent the last week trying to figure out medicare enrollment and medigap insurance versus medicare advantage.  And add to that trying to figure out the application for Mass Health for me and the girls and my brain is about to explode!

People often ask what they can do for me and I'm never able to come up with a tangible thing that I need done.  Even when it's offered I have a lot of trouble taking the help that's offered.  I recently realized thanks to my very special cousin Lisa Santospago, that it's not exactly help that I need.  It's time to laugh, it's time to feel "normal" and just enjoy some real conversation.  Even though she lives close to an hour away, she has been making it a priority to get together with me and just "hang out" and every time I end up feeling revived and ready to face things again.  She's come out to do something with me almost every weekend and we joke the weekends we don't do something that we're missing each other.  Same thing when I get together with friends, the next day I feel so much better!  A lot of times people say they don't know what to say or do and honestly I don't need to talk about what's going on at home.  Unless they want to hear about it, I don't really need to talk about it.  What I need is to just have that time to let go, laugh, and feel normal. 

Stopping work was definitely the right thing to do for me and my family but I don't think I anticipated the loneliness that I would feel without that community of women friends that I had.  And it wasn't like we talked every day about my home life but we laughed and shared stories of our kids, and when I was having a bad day there were plenty of hugs to go around.  Through no fault of his own, Tim is unable to recognize at all if I'm feeling sad or just plain having a bad day.  Even if I tell him outright, there's still not really a reaction.  It's hard not to have "that person."  The one you can share just a look with and they know exactly what you're thinking.  I'm still trying to remain hopeful that when we start the Keppra weaning process next week that I will see at least some changes but days like today are just plain hard.