Every day is just us moving forward, mostly without a plan and for me mostly without feeling.
Just. Keep. Going. The most I let myself feel, which is almost nil, is right here on these pages. This blog is my outlet. But I can tell you this; I've never felt more conflicted in all of my life. Sometimes I can't breathe. I feel sad, I feel lucky, I feel terrified, I feel angry, I feel angst, missing the first man I ever looked up to. Missing him when he's sitting right next to me. Missing the strong Marine that once chased me around the house and out the front door because I swore at my mom. All 7 of us had a healthy fear of my dad. What he said went and that was it. And this I know; that we will lose him twice. The first time has been for the last 10 years. Ouch it hurts. And when he goes, am I supposed to feel relief?!? Because I can't watch him in this pain anymore. Not physical pain of course, but those weathered lids get red rims and tears form and it brings me to my knees. No shit. This isn't fucking fair.
I have talked to so many people about my dad. I've compared stories, symptoms, and every person that has dealt with Alzheimer's or dementia has a relatable story. Sometimes when I tell someone who doesn't understand the disease, I get the "well at least it's not cancer or something." I think earlier in the progression I even uttered those words. I don't feel that way anymore. This is horrendous; it's actually physically painful to watch my dad fade away a day at a time. And even more agonizing when there's a moment of clarity for him and he knows he doesn't know. Does that make sense? My days with him are spent grabbing onto moments. Not hours. Moments. And I can't help but feel robbed. My best friend explained it perfectly to me the other day as I'm crying in her ear, telling her I don't know how to feel. Her words "the essence of Bernie is a strong, unwavering presence, and now he's a shadow of that. It's your turn to be strong and unwavering for him."
So true. And so hard.
Our family meeting this Friday was just the 7 siblings and how we can all help mom with what she needs for dad. The first sentence mom mustered through tears was "I can't even believe we're here talking about this." It was a moment, for me, that was like a swift kick in the stomach ... and I wanted to stop right there and just say "ok let's just sweep this under that right there rug." lol not gonna happen. So for about a half hour my 5 brothers, my sister, my mom and I all sat, passed out information about Alzheimer's care and talked about our dad. We laughed really hard, we cried, we asked questions. What's in store? We don't know. How long do we have? We don't know. What should we do? We don't know. It was pretty tell all .. **enter sarcasm here.** I mean how do you even talk about this? I'm just going to have a conversation with daddy, tell him I'm not ready to lose one more piece of him, I want him back and it'll be fine. Someone pinch me.
This little lady of ours is the oldest soul I know. I say that all the time. Papa is Drew's favorite guy. The other day I picked her up from school and I made the mistake of calling dad and telling him I had to go show a house, then pick up Drew and we'd be over. First of all he usually comes with me to pick up Drew and I know (I was thinking as I was relaying my plans to him) you can't tell him too many things at once; it throws him off. He can't grasp more than one thing at a time. So I pick Drew up and call dad on the way over there. He's on my SYNC in my car so Drew can hear him. He says he's somewhere else. At a restaurant. I said "how did you get there?" He said "I'm still trying to figure it out!" Then he said he was at a donut shop. At that point I knew he wasn't at a donut shop but Drew was convinced. She was sobbing in the back seat and begging me to go find her papa at the donut shop he said he was at .. she just knew he "took a break at the donut shop!" Of course I got home and he was there ... 100% confident we were at the restaurant. He was sitting in his own living room. Drew was so relieved to see him and asked him "why did you think you were at the donut shop? Do you want some donuts, papa?" Although he chuckled, through it I saw his heartache. And so did she. She looked at him sweetly, put her little hand on his and told him it was ok because everyone gets confused.
I'm exhausted. And I'm worried about my exhausted mom. To say she is amazing sounds too cheap. I know she's tired and I know she hurts. It's another facet of this. My mom. I can't begin to understand what she sees. This is our dad. This is the love of her life. Doesn't anyone have a magic wand laying around? I could really use it.
To dad, I miss you. I love you and what you've given me in 35 years is irreplaceable. What you've given Drew in 5 will forever be unmatched.
To mom, I love you. I can't pretend to know what you feel but I am here. Always. And we will be ok.
To Drew, thank you for choosing me. I can't promise to be here for the rest of your life, but I will love you with everything I have for the rest of mine.
There is a song that I love and a line of that song struck a chord with me:
"May you have a strong foundation when the winds of changes shift."
Indeed.
