Things I never thought I would need to know.
Learning things on the fly is hard and you never feel like you are getting it right. Taking care of your husband when you’ve been handed a diagnosis of aggressive cancer is akin to someone pushing you off the edge of a cliff and you have a parachute on, but you’ve never used one before. You’ve been given brief instruction, but you were in shock and not really absorbing information. I am a mother; I’ve cared for my children, but I never understood what caring for my husband would be like as he grew closer to death. I think I expected Joe to be “Joe” forever. I didn’t realize as the Cancer became more aggressive, I would see glimpses of him, but they were fleeting. His body and mind were fighting hard. If you have to travel this journey, know that your feelings might get hurt, but it’s comes from a raw place of fear and has nothing to do with you or how you are caring for your loved one. Joe would say things that might have sounded cold or heartless to me and the kids. Things he would have never said. He was the most caring and kind partner, so hearing words like this took me off guard and disheartened me, and I thought that he didn’t appreciate me. He really did, but when you are tired and bouncing from emotionally drained to emotionally heightened, you process your feelings differently.
We immediately started treatment at the cancer center. Radiation at first and chemo a few weeks later. What I didn’t realize is that everything that was indelicate or private, becomes in your face. Our children went to every single appointment, we experienced this journey as one, all four of us as one.. I should have insisted at this point that he start taking MiraLAX daily. I didn’t know he was having problems going to the bathroom, because he physically got up and went to the bathroom, but nothing was happening. If your loved one becomes constipated, taking MiraLAX everyday might help or a mixture called a brown cow, I learned this from one of Joe’s wonderful nurses. It’s 2 Tablespoons of Milk Of Magnesia stirred into 8 oz of warmed prune juice. If its warm it tastes better. Just know that your loved one may be too embarrassed to tell you if they are unable to use the restroom. You will learn all about Senna and Magnesium Citrate. Some Mexican restaurants have water-based popsicles. I found them made with prunes and this was soothing for Joe.
The cancer center was an everyday routine. Our entire life rhythms were changing, and everyone felt a disturbance, but none of us could put or finger on what it was. Joe felt guilty that he had cancer and was ruining our lives. Willow loved the new batch of people she was able to shine her sparkle with at the Cancer Center, Bryer was just quiet and introspective. I didn’t feel anything at all, I was in shock. I thought a lot about my Mom. She had just died suddenly of a stroke. And I know she would have stepped right in and helped me. She would have soothed my mind and my heart. But for whatever reason, she was gone, and I was here. I was all he had and to me that was not enough, at all. I missed my mom so much.
Joe lost a lot of weight very fast. You should find adjustable belts at Meijer or Walmart. Target never had them. As your loved one loses weight don’t forget to buy them smaller underwear. Buy extra socks. Joe was unable to get up the stairs to the bedroom and stayed pretty much in his chair all the time. The leather of his chair rubbed the skin off of his elbows. I took his old socks and cut the toe part off and made elbow pads for him. Joe wore his own, normal clothing as they were part of his identity, be eventually he had to size down to stretch waist pants. Your loved one might be very cold, even though it is warm in the room. I had a heating pad for him when he was feeling cold.
With each treatment, Joe was welcoming the destruction of his strong body, just for more time with us. As the treatment increased, so did the side effects. He had thrush so badly in his mouth and I was at the pharmacy every day for something. There was a nationwide shortage of nystatin for the thrush and I felt so helpless. He became so weak from the treatment that he had to be hospitalized. At the hospital they figured out that he had a-fib, he needed oxygen and he had MERSA. I got him back home, but I had to learn how to give him IV meds every few hours. I am not a nurse; I was not gifted with the skill of being able to deal with fluids…. But here I was spiking bags, cleaning lines, and administering meds via a port in his chest. It was a struggle.
The cancer had eroded his rib, it was spreading. He was becoming so confused and I felt so helpless. I was trying to balance keeping the kids quiet, taking care of Joe, my art, doing the housework, the yard work, and making it seem like we were all fine. I asked a few friends for advice or for help, but for the most part, Joe didn’t want anyone in the house. If you have a friend who is a caregiver and they reach out, please just go help. It’s hard to ask for help.
As Joe’s Cancer spread, the doctors never said two months or two weeks, time was not quantified. Things happened so fast. We were fighting this and suddenly, I was frantically pushing our furniture in front for our doors so Joe could not get out. He was sure that people were trying to hurt us, and he had to get out to protect us. He got out one time and fell in the front yard. He was muddy and had lost his glasses when I found him. Joe would take things apart, the remote, the air conditioner, he started to cut things up with scissors. He cut his oxygen tubing, he went into my studio and just started cutting everything. I was so scared. The cancer had traveled to his brain.
Joe’s doctor recommended hospice. Our affairs were not in order. Our life was unravelling. After hospice talked to us they wanted to know where he wanted to “go” afterward. They meant what funeral home and Joe just wanted to go sit in his hostas. He asked if they would give him a shot and he would fall asleep? They explained how it would work and he looked and me and said, “you have to do this. I need for you to do this.” I needed my mom and my hands were sweating. The hospice nurse was so kind, and we talked about a lot of things I really liked her. But she was unable, per policy, to be my friend afterward.
He passed a few days later, and the funeral men came to get him. It was dark outside, but the lights were on in the house and they propped the front door open. They took him and I was left with the front room full of moths and night flying things.
There are no heroes, in life. We never think we are doing the right things. He picked me to walk him home and I did the best I could.