Part 2 - The Caregiver

I have always been a very nurturing person. I like to take care of the ones that I love, it brings me joy. Being the caregiver to your terminally ill husband is a whole different ball game. I pushed Jerry to see the Dr whenever he did, our entire relationship. It is like that with a lot of men. They think they are fine. Jerry was very rarely sick. In the 15 years that we were together he had a cold, and the Flu a few times, thats about it.

From the moment Jerry went to the Dr. for the initial appointment I went into full swing caregiver mode. I HAD to help him, and make it better. My role was so unbelievably hard. Let me just tell you about the Patient Jerry.....He was a stubborn one for sure. He wanted to be in control of his medication, and of course in good ole Jerry fashion, found an app that would remind him when to take his medication and he could log it in the app. It had alarms for when to take the next rounds of medications. I think he liked to be in charge of something in his care. He did this for about a month until right after he started chemo. He was not always good about remembering to take his meds after that, and would wait until he was in too much pain before he took them.

How I spent many days at home

I immediately jumped into researching doctors and making appointments. Looking up forums for answers on what to eat, how to nourish his body and heal him, alternative treatments. I looked up things he would need for chemo treatments, and its side affects. I created a wish list on Amazon and friends and his colleagues all used it to send care packages. He would cry sometimes when we received these. Jerry didn't get out of bed much, and wasn't very happy. We fought many times about getting him to drink enough water and eat enough food. I made a medical record chart in excel so that I could track every his temp, his breathing, how he felt, if he threw up, if he had a nosebleeds, when, how often, his stools etc. I would call the nurse and ask a million questions. He said he would drink Pediasure so I bought cases of it, he liked Snapple all of a sudden so I bought cases of it. I would cook, help him change, scratch his back, help him out of bed, massage his legs with coconut oil. He didn't want anyone but ME to help him. On this first day of chemo we were so scared, we had told the kids that he was getting medicine to try and help him. When we were there about to start, I got a call from my little ones school that he was sick with a fever. Luckily I had a good friend that was picking him up anyway that day and just went and got him early. But after that when we brought Jerry home, I had to tend to him and to my son who ended up with a stomach virus so I could not go near Jerry. I couldn't spread the germs. On his first few nights after chemo I had to sleep on the loft. Crying myself to sleep...I put a journal entry in the notes on my phone that day. I will share it -

Journal entry 1/20/17 - 
Laying here by myself, I have never felt so alone. Although there are many people in this house who I love, I cant be near them right now. Jay is sick and I have been caring for him. If I catch anything, I can give it to Jerry who just started chemo. So here I lay, my eyes dried out from tears, my hands cracked from constant washing and sanitizing wondering how the hell did I get here. How did this happen to US, to our wonderful family, to HIM, my best friend and love of my life. Its so hard to see him in pain. I know his physical pain and emotional pain has to be unbearable. It is so incredibly hard to watch him go through this. I sat and watched them put that needle in his arm, I watched them hang the bag of chemo and I saw his fear. I see fear in his face a lot now, and when he cries, it literally breaks my heart in pieces. My fearless husband who flies and jumps out of planes, has travelled the world and keeps me from being afraid of everything is now more scared than I could ever imagine. Every move or face he makes, scares me. I wonder if he is ok at every moment. We have 7 more chemo treatments to go through before we can get more answers. Before we know if it works or even helps. The logical part of me knows that the truth about his condition really means that we are going to face some dark times, but I am praying for a miracle. This man, who fell in love with me and my 2 year old son. He saved me, he made me whole again and showed me what love is. He gave me another sone who has completed our crew, taken us on adventures, stuck with me and my crazy ideas, and makes life just a happier place. I cant lose him. I don't know if I can face that and I truly feel that if we focus on healing, and positivity that I wont lose him. But here I am, laying here alone, wanting to feel him near me and I cant have that. I am scared, so scared. God help me. 


One day when his mom was visiting we had an argument about me caring for him and he yelled at me and said "Well then leave! don't help me anymore" It crushed me to hear that. After I settled down I went back in the room and cried and cried and told him how much I loved him and would never leave his side. This conversation really changed how we communicated after that. I told him that as his wife and best friend, I wanted to help him in any way that I could and give him what he wanted. The doctors and nurses on the other hand were telling me what I should be doing to help him, and it was different than what he wanted sometimes. It was so hard for me to do both but I needed him to understand that all of it was out of love, and fear, and strength.  He told me then and many times after that, that he trusted me to make all of the decisions. He said that he knew that I was getting him the best care and that I would fight for him. This is something he said in the hospital when he was still communicating. I was upset and scared....He still refused to talk about "What if" and I said to him, "babe, I need to know that you are ok with all these decisions that need to be made. I need to know if this is what you want" He looked at me and said, "baby, just fight for me as long as you can"

Jerrys First treatment - He was ready to fight!

When Jerry was admitted to the hospital, he asked me not to leave him. He had severe anxiety being there and didn't want me to leave his side. After the first 2 nights in the observation suite I was sleeping on this chair, with no shower, toiletries etc. I begged him to let me leave and walk down the street to CVS just so I could get some tampons, and not use the hospital sanitary napkins. I didn't leave his side. I stayed. I went home to shower every other day, kiss the kids and come right back. I ate the food that he didn't eat instead of leaving for the cafeteria. The nurses begged me to get some air, and food. They saw my exhaustion, but they also saw that they could not care for him without me there. He refused. I bathed him in the hospital each day, sat with him in the bathroom, I stood hunched over for an hour under a covering next to his face while they put the central line in because he didn't want his face covered and needed me next to him telling it would be ok. I had to put not move an inch because of the sterile environment that it needed to be.

There was a conversation with my mom that I had before he was in the hospital. I was on the phone with her outside, and I think I was crying. I was so scared, and felt hopeless that I was trying so hard to care for him and he was not an easy patient to care for. She told me that I needed to keep doing it, no matter what and not give up. She said that if the worst happened and he did not get better, I will be able to be ok with the fact that I did EVERYTHING that I could to help and care for him. I do have peace in knowing that I DID do everything that I could.

I "suited up" with him and went in with him
for a scan so he wasn't so scared. 

Something happened at some point. Jerry went from positive to negative. He was so sad all the time, and quiet. He would try to get out of bed to come eat downstairs. He would have a pill with him in case he got sick and he would sit quietly and try to eat. Then many times, he would get out of the chair like he was going to be sick and quickly go to the bathroom. I would follow him in and he would cry. He would just break down. He would say, "I don't know why I keep crying" I would just hold him and kiss his neck or cheek. He wouldn't let me get closer than that. He wouldn't let me kiss him or be close to him that often. Which was very unlike him. He was angry, and emotional. Anyone who knew Jerry well, would say they never saw him yell or get upset. He was always calm, cool, and collective. He refused to talk to me about the outcome that was looming over us. He would say "lets cross that bridge when we get there" The problem is, when we got to that bridge....it was just me standing there.