Finding Dory

I have seen the movie before, however the other night I experienced it in a completely new and unexpected light. I was hit hard and fast with the realization that Dory’s constant, frantic searching may be what it’s like for Dad in his mind. The questioning who you are, wondering your purpose, feeling as if you’ve lost all connections. Plain and simply forgetting everything! This time I had to leave the room. Because as much as my girls understand what’s going on and I’ve allowed them to see me cry and talk about grief, some days I want to protect them from the hurt.

It is so damn hard to witness and hear how his mind and his physical body continue to change. What is even more difficult for me are these gaps of time where I am not physically present. So to see the changes since the last time I was with Dad is really hard.

There are more and more times when I’m with him and I think, “this is not my Dad”. And it absolutely breaks my heart; I hate thinking this way. Because this horrible disease is robbing his mind. My Dad didn’t choose this. It is my conjecture, but hindsight tells me Dad knew for a while that something wasn’t right. I’m guessing when he began to realize what was happening he was afraid to tell anyone because having lived through the disease with both my Grandparents, he knew what would happen. These are questions that run through my mind, but I don’t ask him because at this stage, I feel it is a moot point. My Dad didn’t choose dementia.

There are so many questions, but part of my learning to accept this is being able to say the answers to those questions don’t/won’t matter because there is no stopping the disease. Maybe we could have kept symptoms at bay a while longer, but there is no curing it. And while that may seem horrible to say, it is the reality. Therefore, in accepting that there will be no answers, in accepting that it is the disease robbing my Dad’s mind and there is no cure, I am trying to focus my energy on my Dad’s personhood.  Yet, this is where I feel I’m failing most.

My Dad’s personhood, his soul, his physical body is still here. More and more lately, I’m asking myself if I’m making the most of my time with Dad. Because I’m losing time, and I fear I’m losing it more and more quickly. And as much as the pain of this is so hard and hurts so bad, every fiber of my being literally hurts with wanting to take this away from him. For my Dad to feel wholeness and well. To know his soul again, to know he’s not lost, to know that it’s this damn disease taking his mind. To simply know he is loved.

Robin Williams’ wife wrote an article titled, “The Terrorist Inside My Husband’s Brain.” She writes,

“Robin was losing his mind and he was aware of it. Can you imagine the pain he felt as he experienced himself disintegrating? And not from something he would ever know the name of, or understand? Neither he, nor anyone could stop it — no amount of intelligence or love could hold it back.”

That last line… IT SUCKS, because it’s so true! Many days I’m trying to process what’s going on while also just trying to be in the moment and it’s not until later I wonder if I spent my time letting Dad know he’s loved; assuring him that it’s the disease robbing his mind. Some days it seems as though he’s given up. Much of the time he seems a million miles away. Some days I selfishly want things to just feel like they used to be with Dad.  But the reality is, no amount of science or medicine, no amount of positive thinking, nor the depth of my love for my Dad can stop this disease, nothing is holding it back from stealing my Dad from me.

Oh, this is where I’m lacking so much acceptance and yet learning so much trust in God. Because I know I cannot keep dwelling on the what-ifs and did I do enough. I know that while some days it doesn’t seem like it, Dad didn’t choose to give up. His mind just simply doesn’t know how to tell him not to give up anymore.  I know that ultimately it is not my job to take that pain away; I am not the one who will make my Dad feel whole and well again.  I have been able to muster up hope and joy and I still cling to it and believe that it is possible to experience these things in the midst of this. But I’m not ashamed to say this is by far the most difficult, darkest thing I have experienced. I know other people have gone through worse. I know in some way, shape or form we all have to stand by and watch as loved ones slip away or some are abruptly taken. I’m just learning to be okay with saying life just doesn’t feel okay on most days. Life just isn’t as I wish it would be; it isn’t as it should be. I know it won’t always be like this, but right now I’m just looking for cracks of light in a pretty dark room.

This morning, my devotional verse was Isaiah 43:2 and honestly, I’ve never really honed in on or recognized this one (despite my having to read the whole Bible in college).

“When you pass through the waters [can I insert mad, raging sea here?], I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” (NIV)

And as I looked it up in my Bible and continued to read, part of verse 4 says, 
“Since you are precious and honored in my sight,  and because I love you…” 
Now trust me not only did I have to read the Bible in college, I had to take a class in hermeneutics and I realize that the context of these verses may be about something completely different. And being a busy Mom who barely scratches 15 minutes in the schedule before kids wake up to do a devotion, I haven’t had the time to extensively read the context of these verses. However, I think it about sums up what I need to hear right now and I believe Dad needs to hear it and I will continue to try convey to him. He is with me; He is with Dad; He is with our family… Simply because we are precious and honored and loved.

(Damn you little blue and yellow fish with Ellen Degeneres’ voice to conjure up such thoughts! Damn you dementia!)