From a Caregiver's Perspective

Very honored to have a special guest contributor today, who has graciously agreed to give us a glimpse into her caregiving journey. On March 29th, Joy's son lost his battle with glioblastoma multiforme (GBM). Throughout the past 5+ years, Joy, her son John, and her husband Bill, have been an inspiration to me and many, many others as they've battled their way through everything that goes along with a brain cancer diagnosis. Thanks Joy, for your willingness to share your story!


written by Joy Purvis

Joy and John enjoying time together before their life
was changed forever with John's brain cancer diagnosis.

     Robin asked me several months ago to write a blog on what it was like to be a caregiver. Just now being able to settle my mind, put my thoughts together, and try to express just how I felt. When we found out that John had a brain tumor and would need surgery, it was like – ok that is bad, but they’ll take the tumor out, sew him back up and he’ll be back at work in no time. Isn’t that the way it happens with surgery? After all, John is 23, and he is healthy and strong. How could things be any different? We were sort of naive – I guess you would say! Then after surgery, ok – he’ll do six weeks of radiation, and my husband and I will have to be there for support, and then things will be back to normal. Wrong! Things never got back to normal. Before John had surgery, he told me that I was going to have to be in control and make sure things were done correctly, and I couldn’t cry! I took that very seriously and pulled up my big girl panties and got going!
 

Joy, John & Bill

     John was not married, so even though he was out on his own, he needed help, and his dad and I were the only ones to do that. Gratefully my husband and I had just retired so we were open to the caregiving opportunity. We lived with John during radiation and his first chemo and his daily trips for 6 weeks back and forth to Emory. Everything at that point was new and we had no idea what was ahead of us. That’s a good thing – not to know what’s ahead! When I made the first call to Duke, the doctor that called me back that night, said in no uncertain terms that John would have much more than this initial chemo, that he would always have to be on chemo. Maybe that was our first sign that this was going to be a journey. As we began to read and research glioblastoma, we soon realized that if John was going to survive, he was going to need our help, and we would all need the Lord’s help to get us through. We also prayed together and said that whatever was ahead that we would pray together, make a decision and go with it. We wouldn’t or couldn’t look back once the decision was made. We followed that for 5 years never saying, what if! I feel like that was an important step we took that night with the Lord – going forward not looking back!

John undergoing one of many chemo treatments.

     With brain cancer you live from one MRI to the next, and as you approach the next MRI you can just feel your body tensing up and your mind racing to the what ifs! John was able to live on his own, but we made trips to Atlanta every other week, and every other month to Duke, and then John would come up to our house and stay after chemo until he was feeling better. After it all got started, I really don’t think John ever knew again what feeling good meant. I tried so hard to let John have his space, to be there to help when he needed help but not to try and hover over him. He wanted and needed our help, but I wanted our specific help to be his decision. It didn’t take long to realize that he couldn’t handle talking with the different insurance issues, so I pretty quickly took over that job. He would tell anyone that called to talk with me. With brain tumor patients, it becomes increasingly difficult to deal with mundane activities. Stuff like that just stresses them out. That’s why brain tumor patients travel with lots of family behind them – never on their own.           

     It takes lots of patience being a caregiver. Once John had surgery he never got in a hurry! It was almost like there was no concept of time. We all had to walk to a slower beat. Eating was slow and he could almost sit at the table from one meal to the next unless there was a nap in between. Sleeping until 1 or 2 pm – no problem. John would stay up late, and I think that was, in some way, his way of staying in control when everything around him was out of control.

     For 5 years we were all in total stress. There was never a time that we weren’t dealing  with terminal cancer hanging over our heads. If John wasn’t with us I was always wondering how he was doing, what he was eating, and how he was feeling. When I look back I wonder how we all made it. How we kept our hopes up? How we feel so blessed to have had the privilege to care for John while he had cancer? How we feel blessed because he beat all odds and lived beyond the 15 months that typically befalls this disease. The only way we made it through was trusting in the fact that we knew that the Lord was in control and that He had John in His hands. Leaning on family and friends that held us up in prayer got us through the 5 years. Was it hard? Yes. Would I do it all over again and never complain? You bet I would in a heart beat. God has certainly taken John away, but I try not to focus on that, but rather on the joy that we had caring for John. Each day of that experience drew us closer to the heart of God.
  
1 Thessalonians 5:16-18
“Always be joyful. Keep on praying. No matter what happens, always be thankful, for this is God’s will for you who belong to Christ Jesus.”