Hi,
My questions are from the perspective of the well spouse or family member: Any tips for caregivers/spouse/family in terms of coping with/confronting/discussing this chemo brain issue with our loved one? Also, are there safety issues for parenting while experiencing fog?
My husband is a Hodgkins survivor of almost three years. Chemo brain is a reality at our house. It is a challenge to be on the receiving end of the fog but it also isn't fair to blame the patient/survivor either. It would be like blaming someone with dementia for their confusion. At the same time, it is tough to be loving and patient while repeating the answer to a question 15 times and still not have him remember that we have discussed it. I also swear my husband is on a loop...he just repeats himself constantly. We try to keep it lighthearted and I joke that if he hears himself say "Like I said...," then he should just stop but there is a point at which it is no longer funny.
I have to say that, at some point, I began to wonder if it was contagious. I began to think I was losing my mind too. I'm sure spouses/caregivers/family experience a level of fatigue and stress that begin to impact our own memory, which begs the question, Where does fatigue fit into all of this for cancer patients?
Thanks so much for bringing attention to this important situation! And thank you in advance for any thoughts in response to these questions.
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Cancer does indeed affect the entire family, and so do the side effects.
ReplyDeleteIn writing the book I interviewed several spouses who shared similar stories about feeling frustrated. You're conflicted because you want to be that rock for the person you love who is going through this awful experience. But at the same time, you want your old life back too. None of us, whatever side of the cancer fence we're on, ever imagines signing up for this.
Some of the best advice I collected during the research phase of Your Brain After Chemo came from "Samantha," an elementary school teacher in New York and the wife of a testicular cancer survivor. She spoke about the tremendous guilt she always felt after "losing it" with her husband Mark after saying things like, "How many times do I have to tell you?" So she set up systems to take some of the pressure off by syncing their home and work calendars and to-do lists and then kept her fingers crossed that Mark would check the calendars and lists, which he did more often than not.
She also tried to look at their relationship more holistically. She could see the changes in his memory but she knew that those changes did not in themselves define him. He still had the same sense of humor he always had. He still had outside interests (bike rider). He was still a passionate father and still cared deeply about Samantha who he called, "my beautiful wife."
In terms of your question about safety issues for parenting, I'm not sure what you mean exactly. People with serious brain fog have to be careful about safety in general: not to leave the kitchen while cooking, etc., all those things that we think about for people who are easily distracted...
And you wanted to know about fatigue. Yes, fatigue definitely can factor into making brain fog worse, just like it can impair focus and reaction time in people who are not cognitively impaired.
My wife is a year out from chemo and still has chemo brain. She is a veterinarian and hopes to return to work as the physical toll from her surgery and chemo resolve, she does not seee her chemo brain to be as bad as it is(is this common?)How in the world does one know when one is able to enter the work place in a competent manner
ReplyDeleteparticularly when one has had a job demanding a high level of cognition,memory, and multitasking. When is it safe to go back to work,how do you know in a job where a seemingly small mistake can have big consequences
You have asked some important questions. First, it may help for you to know that it's not uncommon for people to still have brain fog at one year post treatment. Statistically, of those who experience it, one-half are better at one year post and three-quarters are better at two years post. So it may be that your wife is not quite ready to take on her pre-diagnosis workload.
ReplyDeleteStill the question remains: How will you or your wife know when she's ready to get back to work. I'm not a doctor or a neuropsychologist, but I can tell you what others have done in your wife's situation. They start out slowly, taking on one safe and simple task at a time, mastering that task until they take on the next. Your wife may want to ask for some supervision until she feels more confident and competent.
I can understand that there are a lot of cognitive skills involved in being a veterinarian so I would encourage your wife to set up systems to help her with her memory, whether that's taking notes, or keeping a detailed calendar, etc. We do have tips in our book that can help but the bottom line is to stay as organized as possible and try to keep clutter (and chaos) to a minimum.
Finally, if you wish to email me privately and let me know where you're located, I may be able to provide you with names of an expert or two who can help. You can reach me at IdelleDavidson@gmail.com.
All the best to you and your wife.