Extreme Caregiving

This is the story of a woman whose husband's cognitive and personality changes after the diagnosis of a right-sided malignant glioma were so severe as to be outright dangerous and of how their medical community responded.

Melanie’s husband was diagnosed with a brain tumor after suffering a seizure. He had a resection and recovered well. He was discharged with an appointment for post-surgical follow-up and told that there would be no further treatment necessary at that time. She was told, privately, that he might experience some cognitive challenges, though no specifics were given, and that the steroids he was taking to help control brain swelling, along with the anti-seizure medications, “might cause some sleeplessness or irritability.” He was told that there were potential side-effects to the medications and that he may notice some changes after the surgery, but was encouraged “not to worry.”

Frank was, in Melanie’s words, “…a big, bold, force-of-nature kind of guy, used to having his way and getting what he wants.” Cancer, even brain cancer, didn’t change that. What it did, however, was make him a confused, paranoid, angry, aggressive “kind of guy” who owned several guns, began to fear that Melanie was “out to get him,” took her name off their joint bank account, took his guns and ammunition, moved into their RV, and began harassing his family.

At first, he would show up at their home unexpectedly, sometimes the middle of the night, waking Melanie abruptly. She never knew if he would be “the loving Frank that I married” or the “crazy, angry man” who would scream obscenities and tell her what a terrible wife she was. Still, when he would allow it, she would fix him a meal, encourage him to move back home, and get him to take a shower. She would wash his clothes, keep his prescriptions up-to-date, and help him remember medical appointments.

Because Frank did not allow her to attend his appointments, she had no contact with his medical team at all, and because he was able to present reasonably well at times, they were unaware of the severe personality changes that were manifesting at home. As Frank’s behavior became more bizarre and hostile, Melanie did try to speak with his team by phone. Unfortunately, they did not allow her to talk to them, to share her concerns as Frank’s primary caregiver; rather, patient confidentiality was wrongly cited (she was not asking for information from them), and her concerns were never registered.

Frank became increasingly aggressive and hostile and began threatening to kill Melanie. He appeared at a family gathering one afternoon with one of his guns, telling everyone that it was loaded and “just waiting to find its target,” indicating Melanie. Thankfully, one of Melanie’s relatives was able to talk him down, and he left peacefully. With help from her family, Melanie reported the incident to the police, took out an order of protection, and again contacted the medical team with a request for an evaluation to have his gun license revoked and weapons removed. Thankfully, this time, the team did listen and worked with the police. They also, because of this new information, were able to make some adjustments to the steroid dosing and to his anti-seizure medication that had a profound effect on his aggressive behavior.

One can’t help but wonder whether if the team had given both Melanie and Frank more education around the potential for cognitive challenges and mood and personality changes at the outset, would Frank have been more open to telling his team about what he was experiencing? Would Melanie, if she had understood that Frank’s bizarre behavior was most likely cancer/treatment related, have felt empowered to be more insistent in telling the team what was happening with Frank the first time that she called? If the team had listened to Melanie’s input as a primary caregiver, even though they were unable to provide her with any of Frank’s personal medical information because of privacy laws, could some of this have been avoided?

Thankfully, while Frank continues to experience paranoia, the overt threats of violence are gone, and Melanie continues reaching out to care for him as best she can under the circumstances.