Wednesday, April 17, 2013

Chemo Brain: A Guide for Caregivers

Sara Barton wrote this beautiful piece for her blog, "The Practical Caregiver -- Cancer." She has graciously allowed me to re-post it here. Not only does Sara write about her experiences as a caregiver but she provides tips and guides for others. See her blog at -- ID

By Sara M. Barton
Guest Blogger

Getting Past Chemo Brain
I'm a big believer that family caregivers can make a difference for cancer patients when we focus on overcoming the dreaded "chemo brain" by helping our loved ones in gentle, respectful ways.

After Chemo
I trained as a teacher, so I understand that not all students process information in the same way. I often saw students struggle to learn what came easily to other classmates and peers. It's part of the reason why I always made an effort to gear my approach to the specific student. By understanding how a student perceived information, I was better able to figure out ways to connect that student to the information I wanted to impart.

Devise Strategies
Why does that matter? My mother had chemo brain after being treated for lung cancer. Oddly enough, she also had ADD. It runs in my family, and although I don't have it, I made an effort to understand what it is and how to help someone overcome it. Patterning the brain to overcome deficits can help build connectors and connections, can bypass what isn't working. The human brain is an amazing thing, especially when you look for ways to overcome the obstacles. In the years of being a family caregiver, I had devised strategies to help my mother cope with all the simple things that she couldn't remember due to the ADD. But with chemo brain? Wow. She was devastated. Why?

She had an amazing mind when it came to language skills. Verbal and expressive, she might not have been able to focus on concrete issues, but she had been a writer for decades, a voracious reader, and a talented Scrabble player, who didn't like shortcuts or cheating. With chemotherapy, all that seemed to fly out the window.

Encourage Options
Even as those cognitive issues began to rear their ugly heads, I was looking for ways to reduce the emotional blows she endured because of the chemotherapy. We moved from competitive Scrabble to cooperative Scrabble. I refused to compete with her, insisting that it was more important for her to get the words than it was to get the points. I would give her little prompts, trying hard to encourage her to push herself a little more to come up with possible solutions. I even nudged her to think of more than one solution. I wanted her to have options that would allow her to realize, to recognize, that there were points according to the value of the letter tiles.

In other words, I wanted her to have the chance to relearn how to play the game, and in doing so, I wanted to return to her some of the verbal skills she lost after chemotherapy. Did I succeed?

I'd like to tell you that my mother went back to being her old self eventually, but that's not quite true. She never did seem to fully recover her ability to read for any length of time. The joy of reading slowly slipped away from her. Part of that could have been due to the progression of her cancer.

Rebuild Slowly
But I can tell you that those Scrabble sessions actually made a difference. What is my proof? Time and time again we played the game, on a regular basis, a regular schedule. Slowly, but surely, my mother began to recognize the value of the letters and to recall the potential words. It took hours of sitting and staring at the board. I believe that's part of the recovery process. The human brain needs to see, to rebuild the connections in the brain, or even to bypass the old connectors for new ones.

Would that same type of brain patterning have helped her with her reading skills? I can only wonder. But I can tell you that she was pleased as punch the first time she found herself a 50-pointer on that Scrabble board, without any prompting from me. It was her success, her win, her climb up the mountain, back to what she was before chemo brain challenged her life.

If you're a family caregiver for a cancer patient challenged by chemo brain, consider finding gentle, respectful ways to encourage your loved one to "relearn" what once came easy. Focus on the fact that chemo brain is a very real side effect from many types of chemotherapy drugs. Expect that there will be times you might have to prompt your loved one to remember. Don't nag. Don't take over your loved one's mental life. Think of yourself as a train conductor. You want your loved one to get from point A to point B. Call out the stations as they pass by. Remind your loved one what he or she is seeing and where he or she is seeing it. Give a heads up at each juncture. When you do this, you are assisting your loved one to reconnect, to stay in the game of life, to regain what was lost.

Don't Judge
Always remind yourself that a cancer survivor with chemo brain is not a child. Never speak down to your loved one. Never say things like, "Listen this time!" or "You have a mind like a sieve! Why can't you remember this stuff?" Think of chemo brain this way. Your loved one's brain is like a castle, filled with rooms. The chemotherapy has gone through that wonderful palace and not only shut off the lights, but locked the doors. Recovering from chemo brain requires that each door is not only unlocked, but the light switches have to be turned back on.

That takes time and effort. Some parts of the brain may be less affected by the chemotherapy than others. Take a mental inventory and build on it. What is your loved one still good at? What can he or she still do without as much prompting? When you identify those skills, work with them. They will help your loved one recover more quickly, because everyone needs to experience success on a regular basis. It's what encourages us to take challenges that we believe we can tackle effectively. We are drawn to light and repelled by darkness. When you identify things your loved one can still do well, find the associated activities that offer some struggles, and work on those skills. Those are the connectors in the brain that will eventually lead to the darkest regions. If you focus on the darkness, if you only see what the failures are, you will miss the opportunity to light the lights. Strength comes from success, from what is functioning. Weakness comes from darkness, what is failing. Point yourself in the direction of helping your loved one use his or her strengths to adapt to weaknesses.

Above all, believe in your loved one. Don't assume that every change in mental acuity is permanent. Don't be afraid to put up notes, to put things in writing, to place reminders. There will be times that your loved one may get frustrated or feel "stupid". Make a point of reminding him or her that chemo brain is real and not the result of laziness or disinterest.

One thing I did learn from watching my mother struggle with the cancer and the cancer treatment? It's a lot of extra work above and beyond living life. It can be exhausting to juggle the side effects and the emotions of cancer. Cancer caregivers need to understand the wide range of issues. When you educate yourself, you are better able to reach out to your loved one. You don't want to make your loved one dependent on you because of chemo brain. You want to empower him or her. Offering effective prompts and encouraging your loved one to get back to living can actually help overcome many of the temporary effects of the powerful drugs. When you focus on helping your loved one regain those mental skills, that's the best kind of caregiving.

[And this as well from Sara:] The Practical Caregiver was created in response to a promise I made my mother. Her greatest fear was that I wasted that decade of my life on her. I'm all about empowering patients and finding ways to enable them to overcome their limitations through the right kind of support. I use my experience and education to help connect the caregiver dots, to improve quality of life for all families experiencing health challenges.

1 comment:

  1. I'm sitting here crying. Wow...... WOW.

    Don't Judge.....Validate.... Those are the words that bring the tears. It's so hard for people to dismiss that which they cannot see.

    Sara, you are so very special. Your mom was so fortunate to have you at her side and your willingness to share your experience as a caregiver will benefit many.