Lori Luedtke is a native Texan but has lived in Florida since 1996. She is married and has one biological son and two stepchildren. Lori was diagnosed with terminal brain cancer glioblastoma (GBM) grade 4 in May 2012. After doctors gave her a prognosis of two months, she participated in Standard of Care which consisted of radiation and chemotherapy and took part in a clinical trial at Moffitt Hospital in Tampa, FL.
When we get cancer all the attention is focused on us, but the demands of caregiving can leave behind family and loved ones that need attention as well. Especially our children.
When a family member or friend is diagnosed with a terminal illness, all attention is focused on the one that is sick. If there are children in that family then problems could arise, as children also need love and attention but may not get as much because of the demands of caregiving. When I was diagnosed with terminal brain cancer, I was fortunate enough to have a great deal of friends and family—but all their concerns still lay with me.
My son developed issues because he had no one to talk to. He was concerned with his mother possibly dying and not knowing what would happen to him. He turned to his friends at school but no one wanted to listen to him. So, he looked for others to talk to and ended up with “friends” that encouraged him to kill the pain with illegal substances.
If I had been aware of what was happening, I would have done something about it. Since I was unaware at the time, it has been a long recovery time for both of us. I had lost my brother, and my son his uncle, due to cancer a few years before I was diagnosed. My son was convinced that I would have the same outcome.
I attempted to assure him that I would be honest with him through the whole process and asked if he would like to go to my doctor's appointments with me. He became depressed and isolated and began making poor decisions. He said, “I felt abandoned by my family. No one was there to ask about my day or listen to me”. Unfortunately, no one recognized any of this at the time.
I suggest you have one friend or family member that is solely focused on your children. Have family meetings which include the children; provide activities to help distract them; and reach out to the families of their friends and ask them to include your children in activities. Reach out to the school or teachers and let them know what is transpiring so they can look for behavioral changes.
It is so hard for the one who is ill to do and plan all of this because they are literally fighting for their life. My cancer shaped his past but did not define it. My son says, “As I have gotten older, I have realized sometimes it’s ok not to be ok”. That’s a good lesson for all of us.
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