Oh, oh. Not having a good day. Don't worry, Paul is fine. It's me. Don't know if I'll post this on my blog or just save it to my personal journal. Will decide later. Might not feel brave enough to share this because someone might think I'm not stable or something. I know there are thousands of other "caregivers" walking a similar path. Been lurking on a caregiver forum but never posted. Maybe I should only share this on that forum; they're more likely to understand and less likely to condemn me for feeling this way. Or maybe honestly sharing my feelings could help someone? I don't know.
I don't understand how I can just simply plow ahead through several unremarkable (boring) days or even weeks and then "Bam!" some deep down emotions sneak up and bite down on my heart with such fierce unbearable pain. It hurts so bad that actually I feel nauseated. What is this? Where did it come from? I was actually having some fun doing the blog, but deep down felt a little guilty because I was enjoying myself. I was enjoying focusing on whatever I could identify as a blessing from God. Even tiny ones. If you scour through your daily moments LOOKING for blessings, you just can't help but find some! And then you feel so joyful. And when you share them they become even more joyous. Then out of the blue, BAM. Guilt reminds me that Paul isn't having ANY fun. He just lays there in that bed. He doesn't seem to show any joy or happiness. Is that it? Is it guilt that has bitten me?
It's just that all of a sudden I feel all alone. I can't seem to find a blessing right now. Is God that busy? Even though Paul is right here in bed just a few feet away from me, I'm alone. Today it's been 6 months since we have had a normal simple conversation like husbands and wives do all the time. I just want one REAL little chat like we used to have 20-30 times a day. It's just not the same. The "we", "us", "couple", has changed. I need to talk with him, not just play a guessing game to try to fulfill some simple little need he's having at that moment. When he wants something our communication is all one sided. Are you thirsty? Negative head shake. Are you hungry? No. Are you in pain?, No, tired?,cold?,hot?... And I keep trying and trying, still not getting it right. After a bit BOTH of our frustration levels are soaring. He can't get what he wants, and I can't figure out what it is. I would do ANYTHING to please him if I could just figure out what it is. A helpless feeling. Then I have to go somewhere so he can't see me cry. I hate hate hate the tumor, it's an evil thief that is stealing everything meaningful from our lives. I know the tumor is never going away. And now I'm angry too.
When I get like this my mind starts spiraling downward out of control. Sadness is consuming me. Thinking about the funeral and the emptiness that is sure to follow. I waited so long to find him! Life without my very best friend. It's not fair and I'm really scared. My heart is pounding, feels like it might burst.
We had decided to retire early at age 60 so we could start our Happy Golden Years, finally free from years of work. Time to have some fun. Is it worth all the turmoil employees will surely go through as Continental merges with United? Why kill ourselves working another 5 years just to make our portfolio bigger? Is there some magic $$$ number you should reach in order to retire feeling financially secure? When is enough "enough"? Can't we just make what we already have BE enough? Yes, we can!
Our plan was to get rid of everything, buy an RV, live in it fulltime, and travel.
Then I remember how we've spent the last 2+ years excitedly focused on researching and meticulously planning our retirement lifestyle in an RV. We put the big house on the market and got rid of most of our furniture and all of the silly knick-knacks that had now become just meaningless "stuff". As our furniture and stuff were sold we put that money into an envelope labeled "Diesel Fund" to use in an emergency so we'd never be stuck if the price of fuel became an issue. Then we stashed that envelope in our Bank Safety Deposit box. Went to several RV shows collecting brochures and information, and had decided we would buy a Tiffin Allegro Bus and retire as soon as the house was sold. We had such fun planning! Ordered every RV magazine possible. Printed out as least two reams of paper explaining all the systems in an RV. Prematurely joined the "Good Sam" club. Figured out how we'd get our mail, and pay our bills. Closely watched the "RV Classifieds". Scoured the internet and joined several RV forums asking questions and learning about the lifestyle. Got a DVD of all of the military bases with campgrounds and made a list of which ones we would visit first. Made lists of places we just couldn't miss. Made a 2011 calendar of RV group gatherings to attend along our routes. Connected with new RV couples who were already living our dream with plans to "hook up" with them and travel together someday. Mapped routes in order to visit family and friends and not miss anything along the way that interested us. Even totally planned the route that would eventually take us to Alaska and then through Canada. We were already having fun just planning and we hadn't even left yet!! It was finally so close, hopefully just a couple more months and we'd be living our dream!!! (The house had been on the market for 21 months and finally sold 2 days after bringing Paul home from the brain surgery.) Ironic?
Dreams. All gone. In a split second. Snap your fingers. Just like that, poof. Gone. The instant the doctor said "massive terminal brain tumor".
Wait! No! Stop! This can't be real! Not now! Paul already lost his only child Eric way over there in Afghanistan! This should happen to someone else! There's got to be some evil person out there who deserves it! Just NOT HIM! or me!
OK, that's just the way it is. Whenever I get this way I don't even want anyone to try to help me "snap out of it". I just need to feel this pain, till it stops. I just need to feel this anger, till it stops. I know eventually it will go away. It always has before. Just need to be a little patient and try harder to focus on searching even for the littlest blessing.
"Don't Wait - Live Your Dreams Now"