What To Say And Do: A Caregiver’s Perspective

Kathy Beechem, a member of the Brain Tumor Center’s Community Advisory Board and the author of So Far So Good: a Memoir of a Brain Tumor Patient and His Caregiver, was the primary caregiver for her husband, Pete Nadherny, who was diagnosed with a Grade IV glioblastoma multiforme in 2005 at the age of 60. The tumor, which was in the left temporal lobe, negatively impacted his speech and memory. Doctors estimated that Mr. Nadherny would live 6 to 11 months following his diagnosis, but he survived into his 25th month.

Ms. Beechem offers the following recommendations to caregivers as a result of her experience:

DO respect the patient’s knowledge of his body. Respect his opinion of what is wrong, and his requests for what is needed.

DO take every symptom seriously and push for treatment until the symptom disappears or it becomes clear that the problem cannot be fixed.

“Pete was having balance and dizziness problems. We kept thinking it was from the tumor and probably would have to live with it. We finally figured out that his blood pressure was too low. He had been on blood pressure medicine before his brain surgery. He lost lots of weight shortly thereafter, but the blood pressure medicine was never adjusted. We dropped the dosage and his balance problems disappeared. It was not about the tumor at all. As a caregiver I learned to ask all the obvious and dumb questions and not to assume anything.”

DO let the patient make her own decisions about treatment, provided that she is able. Caregivers can help research available clinical trials and the pros and cons of chemotherapy at any given time, but ultimately the patient should make decisions about her care.

DO discuss quality of life vs. treatment with your loved one, and engage in these discussions regularly.

“Pete and I faced decisions about whether to continue treatment at many points during his journey. The side effects of some treatments were difficult. Pete always decided to continue treatment, and I am so glad we did. We would have missed some special times if he hadn’t. But this is a very individual decision—and it is a decision. The medical staffs tend to assume you’ll do everything to continue life—but don’t take their recommendation automatically. Making the decision together kept us from ever feeling like we were victims.”

DO try to make therapy fun. Be the cheerleader and a score keeper.

“Pete had physical, occupational and speech therapy in the hospital and at home as he recovered from surgery. He hated it all. We tried to make it fun. We would substitute a walk in the park instead of all the physical therapy exercises many days. We’d count the number of steps and try to go a little farther each day. Finally—he hit a mile! Walking for us was much more fun.

“For speech therapy, we’d substitute his car magazines instead of the exercises. Once we decided we needed a new car, Pete couldn’t read enough of his Car and Driver and Auto Week magazines, writing his ratings of the cars we were considering on his yellow legal paper. How hard he’d work to make his scribbles legible!

“I would cheer lead every positive accomplishment. Made the stairs on your own today! Took a shower standing up without the shower chair! Each deserved a high-five!”

DO make a list of things you want to do or places you want to see. Nothing, not even treatments or tasks or work, is more important than doing what the patient wants to do. If you travel to see friends, family or sights you have always wanted to see, take along your loved one’s latest MRI and the doctor’s phone number, just in case.

DO consider using alternative treatments in addition to traditional medicine. Options include healing touch, acupuncture, meditation and Reiki, a Japanese technique for stress reduction and relaxation.

DO pay attention to nutrition.

DO continue to enjoy your favorite foods.

“Life was way too short for Pete to give up any of his favorite things. He enjoyed his wine and his ice cream until the end.”

And if you had a sexual relationship prior to the diagnosis, DO keep it alive afterward.

DO inquire about reducing or eliminating medicines that might no longer be needed.

“Pete was always fighting against taking his pills. We made a point to ask what he could stop taking at each doctor visit. We learned that doctors rarely discontinue a medicine once it has been prescribed. On one day after three doctors’ visits, Pete felt like a victor who had just won a battle. His blood sugar pill, potassium and appetite stimulant were all eliminated as he continued to get better.”

DO leave directions on the hospital chart to call you if there are any problems with the patient. Observe them recording your phone number in the chart.

“On many nights Pete refused to take his pills. In one such instance, the nurse first called the pharmacy to see if she could get the medicine in IV form. No luck. So she called the resident on duty and he prescribed an antipsychotic to knock Pete out so he wouldn’t resist taking his medicine anymore. Pete lost two days in a semi-state of consciousness recovering from the antipsychotic. From then on, they’d call me if any issues arose. I’d talk to Pete on the phone and the problem would be fixed.”

DON’T answer for the patient.

“Pete’s word-finding skill was affected by the location of his brain tumor. He could not recall any word that started with a capital letter—not streets, cities, names of people, or states or countries. It was just gone. He also struggled at varying degrees with finding any right word. It was helpful to him if I would stay by him during conversations to help if needed.

“However, when Pete was slow in answering questions or telling stories, I’d get impatient and imagine that those listening would get impatient, too. Especially friends. Finally, Pete had had enough. ‘Stop finishing my stories!’ he said to me, his eyes steel blue with anger. ‘They asked me!’ He was right, and I begged for forgiveness.”

DON’T avoid public appearances.

“I was being honored by the United Way at the Convention Center. It was a few months after Pete had had surgery, and he was still recovering. He was always wearing a baseball hat to hide the scar from his surgery. He wanted to go to the luncheon where I was being honored and I wanted him to go. He wore his boat shoes and a sport coat and his ball hat. As we stood outside greeting the guests who came to honor me, it was Pete who was the honoree! Pete knew so many people in Cincinnati, and this was the first time most were seeing him after surgery. He was so proud standing next to me! But I was truly the proud one! Pete greeted everyone and shook hands and made easy conversation with all. He was beaming. He wore the only hat in the place.”

DON’T make the brain tumor the center of your life or your loved one’s life.

“Pete was much more interested in taking trips, fishing, visiting the family, going to car races and watching the Cincinnati Reds then he was in talking about his tumor. He never let the brain tumor become the center of his life and attention.”

DON’T multi-task if you are the caregiver.

“Pete’s response time to everything was slower after his brain tumor surgery than it was before. The slower response time did not mean that he was slow to understand, just slower to respond. I had been a busy executive before I became a caregiver. I would work my email, do the dishes, fold laundry and listen to Pete all at the same time. I learned that multi-tasking was a big mistake. Instead of getting up right after dinner to do the dishes, I would just sit at the table. Pete loved it, and he noticed I was changing. He started talking more and smiling more. It was a precious time for us. Listening and being fully present was the best gift I could give Pete. I changed my multi-tasking habits.”

DON’T speak to the caregiver if you are talking about the patient. Talk to the patient.

“I learned to evaluate a doctor’s bedside manner based on whether he or she talked directly to Pete about his situation or to me. Most talked to Pete. He and I both got angry when a doctor talked over him to me.”

DON’T constantly ask how the patient is doing.

“When I tried to encourage Pete about how well he was doing, he was unappreciative. If I pointed out differences from the way he was before, he was resentful. I think he felt I was pointing out his weakness, and he fought that. Pete didn’t like to talk about his illness. If I asked him, ‘How are you doing?’ he’d say ‘fine’ and then ask how I was doing, as if there was no difference in our circumstances.”

DON’T have a controlling attitude.

“Pete would get upset when I asked him if he had taken all of his medicine or if he had gotten all the garbage, even the stuff upstairs. ‘You are always bugging me,’ he said. And he was right. I had to learn to stop second-guessing him and trust his judgment and decision-making. I also learned to stop pushing so hard. Whether it was to take his pills, or do his exercises or whatever. I learned to have a lighter touch. Let it go. Have fun. Just be together.”


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