God saw you were getting tired / and a cure was not to be

I am currently sitting in a makeshift hospital room located in my dining room. Our table has been removed and in its place sits a hospital bed. In that bed lays my courageous and lovable husband. Next to that bed is stacks and stacks of medical supplies. You name it, we probably have it here. On the other side of him is his oxygen machine, that occasionally runs when he has trouble breathing. I have placed a bed next to him, so he is never alone, especially at night. I have grown accustomed having a complete stranger take over the medical needs of my husband. It was a surreal moment when they walked in and my caregiving days were over. Granted, I still care for him, but it's in a different way now. He is no longer solely dependent on me. I can breathe again. I can take a shower lasting longer than five minutes. I don't have to constantly panic whenever I leave the room, wondering if he's going to seize and I'm not going to be there. It gives me comfort when I leave, but I still rush home to him whenever I get done doing whatever it is that caused me to leave in the first place. I don't panic when he starts showing signs of distress. I am no longer fighting these battles alone.

He has moments where he has no idea who I am. You want to break your heart over and over again? Have your husband forget who you are. Every time it knocks the breath right out of me and my eyes swell up with tears. I always point to my wedding ring and tell him "you see that? That's a wedding ring. You gave it to me on our wedding day." Without fail, he looks at his hand and notices that his isn't there. To him, that means he's not actually married to me. I'm lying because his isn't there. Every time I tell him "oh, you have one too! It's just in the other room." And I run and get it. Tears running down my face. The man that promised to commit his life to me can't even remember my name.

He's combative. He has moments when he yells, cusses me out. tells me he's going to fight me and even tries multiple times to get out of bed. He tells me he hates me, that he is in this situation because of me. Everyone tells me "Oh don't take it to heart, he doesn't mean it." But it still goes straight to the heart. I came to realization that I lost my husband a long time ago. The body of my husband is currently laying next to me, but my husbands mind is gone. Every fiber that makes Josh who he is, is gone. He has moments, very slight and fleeting moments when he is there. You can see it in his eyes, almost a twinkle of light. One day a few weeks ago I said I was going to feed him. I didn't tell him that I had just bought his favorite food, spaghettios (he's a simple man) and I had planned on giving it to him for lunch. He was weak and weary when I went to sit him up. I scooped up a spoon full and brought it to him. He opened his mouth and took a bite and his eye lit up so bright. He raised his eyebrows and let out a "mmmm". There it was, it was a small glimmer of Josh. A shooting star across his face. My husband was back, even for just a second. I fed him the entire bowl and he enjoyed every bite. I turned to grab him a drink and in that moment, he faded. He closed his eyes and was back to sleep.

He sleeps a lot now. In the beginning I tried to keep his normal routine. I was annoyed with the nurses when they wanted to keep him doped up. I wanted to still have his moments with him. I wanted him awake during the day, asleep at night, eat meals with me and watch tv shows alongside of him. I was angry with them that they were taking these moments away from me. Then I looked at Josh. He was tired. Not just sleepy, but tired. Tired of fighting. Tired of being poked with needles. Tired of doctor visits. Tired of nurses bothering him. Tired of being bald. Tired of chemotherapy and a slew of pills. Just, tired. I finally came to my senses and reality set in. My life will never be the same again.

When we first got home, a nurse told me to go into his closet and get him a stack of old t-shirts. We were going to cut them up so he could wear one and be comfortable. I walked into his closet in search of t-shirts. I immediately went to his drawer that he has for the old shirts he doesn't care about and grabbed the two in there. When I walked back into the room, she said we would need more than that. She said "any shirt will do." So I walked back into the closet and by passed all of his favorite t shirts. Every one I pulled out, I put back. I couldn't bare the thought of cutting it up because in my mind it was his favorite shirt and he will want to wear it again. Then it hit me, like a thousand bricks, he will never wear these shirts again. Even now as I type this, my eyes are swelling with tears. Something so small is breaking my heart. Everything I do now, I think about the last time we did it. Rode in a car. Went to the beach. Sat on a bench. Held hands. Hugged each other.  Danced in the kitchen to no music. Think about that. Truly think about the last time you did those things with your spouse. Was it recent? Or in my case, could you not remember? I wanted so desperately to do them right then and there.

My therapist told me that I have already gone through the grieving process. I can almost pin point in my mind the moment I think that started. After he was diagnosed in October of last year, I felt different types of emotions all in different stages. I think I might have bypassed a few stages. I always use the example - if this was a car accident, my entire thought process and emotional being would be different. If it was a quick and unexpected death, I don't think I would have been able to process the way I am now. But he was given a timeline the day he was diagnosed. We were told he was terminal in that appointment. So in a way, I've had three years to prepare myself. Right now as I look at him, I feel at peace. Does it kill me that my husband is passing? Of course. But a bigger part of me knows that it is okay. He lived an amazing life and I gave him three amazing years after his diagnosis. I have no regrets. The pain hits me in waves. I didn't cry when they told me he was declining. I didn't cry when they counted how many days he's gone without food or drink. I didn't cry when they told me he probably wouldn't make it to the end of the weekend. I did however break down when I walked into my closet and stood next to his clothes. The smell of him. The softness of his t-shirts. I hugged them, putting myself in the mindset of it's him I'm hugging. I actually can't remember the last time I hugged him. In that moment tears came streaming down my face. I couldn't control it. It was a good, deep and ugly cry. It was needed.

Everyone keeps asking how I am doing. Sometimes I want to literally tell them to fuck off. What a stupid question. Why ask it when you already know the answer. What am I supposed to say? "Well my husband is dying of cancer, it's just sunshine and rainbows over here!!!" No. You know the answer. Don't ask the stupid question. But then there are moments when people ask that I feel thankful they did. Often times I forget to ask myself that. I think I am currently angry. I am mad that's a question people have to ask. I'm mad that people even ask the question. Often times I want to just be left alone. But then I think, if they are asking me this, I wonder if it's because they want me to ask them. I often times forget how much Josh impacted so many lives. How many people he touched and how many people loved him.

I still have no idea why this has happened to us and quite frankly, I probably never will. It's not a question I tend to dwell on anymore. It happened. It made us stronger, not only personally but also as a couple. It taught us real true genuine love. It taught us to be raw and real with each other. It taught us fear and compassion. It taught us to not worry about the things we can not control, life will happen and it will move on. People will come and go. The ones you thought will be there, well, they won't be and the ones who you never thought would, will surprise you. It taught me the importance of late night chats with my best friend. It taught me to hold the ones I love so closely. It taught me to see beauty in everything and to kiss my husband as often as I possibly could.