Norm knew there was something wrong with his wife Madeline months before they received the bad news.  It started with little things that were out of character for her. “She would drive too fast, forget things, and sometimes didn’t make any sense.” Madeline’s mother had dementia, so Norm thought the same disease was now affecting his wife. It took some effort, but he convinced her to see a doctor, who recommended she see a neurologist.

During the months Madeline had to wait to see the neurologist, the couple carried on with their daily routine. One morning as they were getting ready to go to the gym, Norm found Madeline with her hands over her eyes telling him she didn’t feel well. He took her to an urgent care center and after just 10 minutes the staff took her to the emergency room. A CT scan revealed a tumor in her brain.

Within days surgery was performed, and the doctor told Norm that his wife may not walk or talk again. This in itself was a shock, but when the pathology results came back, the news was even worse. Madeline had glioblastoma, an aggressive brain cancer that usually claims its victims within a year. “She didn’t have much of a reaction to the news,” Norm recalls. “Neither of us did. We didn’t know what to think.”

Navigating the Journey

Despite the surgeon’s grim prediction, Madeline was able to walk and talk after a month of therapy, and Norm brought her home. Her treatment included radiation and medications, and she did well for many months. The couple took the opportunity to travel, visiting their daughter in Illinois, and Norm’s sister in Texas. Norm arranged to have caregivers come in to cook and help around the house.

As the disease progressed, Norm could see Madeline declining. “She loved to watch hockey but would have trouble working the remote and get confused when searching for channels.” She would forget to take her pills, or think Norm was giving her too many. “It was hard when she didn’t understand she needed to take them,” he explains.

Norm also had to be strong for his three grown children, all of whom struggled with their mother’s illness in different ways. “My oldest daughter works in the medical field, so she wanted Madeline on a regular morphine schedule, but I didn’t want to do that to her. It was better that she was natural and not foggy on medication.” His younger daughter has a difficult time with illness in general, so could only visit her mom for short periods of time before becoming overwhelmed. “I understood that she couldn’t handle it, and that was okay.”

Norm’s greatest worry turned out to be no worry at all. His son who has Down syndrome and lives in a group home handled Madeline’s illness better than anyone expected. “When he came home to visit, he’d notice her acting differently than he was used to, and would tell me, ‘Mom’s not feeling too good today.’”

Help During the Journey

As Norm watched his wife deteriorating, his UPMC stress management coach saw the toll the situation was taking on him. He insisted that Norm talk with a Caregiving Counselor and referred him to Hope Grows. “She was such an outstanding person, very understanding,” Norm says. He also attended the Caregivers group. “It helped me a lot. You share with people and talk about what you’re going through.”

Norm was disappointed that some of Madeline’s friends whom she spent time with prior to her illness seemed to disappear. “They stopped coming around,” he says. “It upset me.  When she needed them most, they weren’t there.” Looking back, he understands that it was probably fear of not knowing what to do that kept them away. “I think you need to reach out to people, and if they don’t want to accept you, that’s okay.”

Norm encourages other caregivers to follow the lead of the person they’re caring for, and for everyone involved. “We didn’t talk about her brain tumor at all. I don’t think she wanted to,” he says. “There are no right or wrong answers. It depends on our journey, and what has happened to us. We need to try and understand what other people are going through.”

In August, after 20 months and two days, Madeline left this world. Norm is grateful to have shared every step of her journey. “From the beginning, I assured her that I loved her, was going to care for her, and do the best for her that I knew how. That’s exactly what I did.”