• How do family members cope with severe chemo brain

    Asked by Tammycare on Saturday, April 20, 2013

    How do family members cope with severe chemo brain

    I am the caretaker and daughter of my Mother who has severe chemo brain after receiving chemo and radiation for 3-4 stage breast cancer. Her cognition deficits are causing much chaos. How do I cope with her and still fulfill my own obligations to my daughter?

    22 Answers from the Community

    22 answers
    • LisaLathrop's Avatar
      LisaLathrop

      I came to hate that phrase "chemo brain!" My husband used it all the time when I would pour my meds into my cereal instead of milk, or try to make dinner and completely botch it by burning or undercooking....chemo brain caused havoc in our household too. What helped me...was a product called ViSalus...or Body by Vi. Essentially a protein shake with lots of nutritional value. I started taking in for weight loss (I gained 65 lbs during chemo and my BMT), but was amazed how my energy level soared and chemo brain virtually disappeared within 2 weeks. To eliminate hazardous situations, you will have to explain to the rest of the family that chemo brain is not "fake" but a very real threat to your mother - physically especially and emotionally, too. Have everyone take turns cooking, dispensing meds, cleaning, and driving her around town....Give your daughter (or if she's old enough let her choose) specific tasks to help. It will help her understand, create a bigger bond between her and her grandmother, and help to feel needed in caring for her gma, too. In time, it will lessen. Make sure good nutrition is the biggest part of her diet. She may not be up to eating so protein shakes like Visalus or any of the other ones out there will give her energy and mental stability, too. Good luck! and be as patient as you can be :)

      over 4 years ago
    • Kathy's Avatar
      Kathy

      Hi Tammycare - I have what I believe to be chemo brain - but not as bad as what you describe here. Sometimes the wrong words come out of my mouth and I can seem forgetful. It seems to be worse when I'm overtired and/or anxious. Is your Mom aware that she makes these errors? Is she getting enough rest? Maybe I should try for myself the answer that was previously posted. Take care now.

      over 4 years ago
    • CAS1's Avatar
      CAS1

      It could also be stress and PTSD. Make sure to talk with the Dr's about your concerns.. Go to Cure on line. They did a report on Chemo B that is very helpful. It can and usually does go away.
      Talk with the social worker at the hospital to see if you can get some help at the home for your mom..Call upon extended family and friends for help like cooking some meals or keeping your Mom company. Make sure to get some time away to recharge yourself and go and pick up some of the wonderful pamplets by the NCI and NIH at the closest ACS site on every subject you could think of related to cancer and caregiving.

      over 4 years ago
    • Kathy's Avatar
      Kathy

      You all have me wondering - are there exercises one can do to be proactive and helpful with chemo brain? For instance memory games. This is a great question and can probably help many of us.

      over 4 years ago
    • gwendolyn's Avatar
      gwendolyn

      Have you spoken with your mother's doctor about this? It sounds like something more dramatic than the usual description of chemo brain.

      over 4 years ago
    • Kossmore's Avatar
      Kossmore

      Chemo Brain is a "real" medical problem that has not been taken seriously by the medical community. The first thing to do is to sit down with your mom and talk with her about her symptoms. She will tell you how frustrated she is, and maybe embarrased about the problems she is having. (Its 8 years for me!) What I found out is taking B-Complex, D-3 2000 (4 capsuls or more) and Flaxseed Oil 1400 mg (1 capsul) every day helps. These are all help increase brain function. Ask you mom what she would like you and your daughter help her do. I am reading a book called 20/20 Brain Power which describes my brain 'not-functioning" perfectly. It has been a big help. I have more information if you would like, you can send me a private message and I will help you in any way I can.

      over 4 years ago
    • angellinda's Avatar
      angellinda

      I'm sorry for all you are going through. Likewise more so for your mother! I can NOT believe these side effects. sometimes I say the wrong things, lose track of what I'm saying.. And the other day.. I walked in front of a car that didn't want to stop for me as I was walking into Walmart. My husband told me to Stop but I wouldn't! Its hard to make up my mind, make decisions and all. I can't spell right or do math right Etc.. Its heart breaking how broken I feel. I really didn't realize this until I wrote some of this down.. My own married daughters are tired of me and my 'excuses' and my other brutal feel like I'm am tortured and left to die!! NO one wants to hear me talk about Cancer! They think I'm well and should be grateful when I feel like Walking Dead. I'm inside of my body but not as in charge as I'd like to be! I'm alone, secluded and Depressed. My husband lost his job & insurance in '09. So we have Zero income! I feel hopeless & Helpless to be Honest. I know I'm suppose to pretend!! Just so people that see me feel better. This is Hard!! I have my Cats that are my Best medicine. But I've now lost 8 since my Triple Negative Breast Cancer. One just one week ago. So its my husband & I and our few cats left. It has to be so Hard for you and your Daughter. My heart goes out to all. I know I need Help. I have another Migraine today and am not feeling well. I wish you the best. Ask anyone of her DRs. for help!! I feel left behind!! Most of my DR.s ALL moved away.. The 2 I have left don't know what to do for me since we have NO income & I can't afford the tests and care. I can't afford to Die nor can I afford to live and recover.. What a trade off.. Kuddos & Hats off to you and all of your most stressful life you are dealing with., Make the best out of it and make lasting memories.. Believe me I'm sure your mother loves & appreciated you!! I'm sorry I can't be more Helpful. I hope she can recover and get any control back. I'm in pain 24/7 & This list goes on.. Best of luck to you all..

      over 4 years ago
    • Clyde's Avatar
      Clyde

      Ask for help. If you have other family members close, get them involved. If not, try and find volunteers, or a service to help you. This is, in some ways, not that different from dealing with an aging relative who is facing any number of situations usually brought on my aging (dementia, Alzheimer's, etc.). The biggest difference, is that your mother is probably aware that she is having problems and will be easier to help.

      You have to leave time for yourself and your own daughter--time away from Grandma when you can just be "normal." It might feel selfish, but its not. It will be easier to deal with your mother if you aren't worried about your own life.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      @Kathy, I have read several articles on the brain exercises that are supposed to help. I use some different ones online. It certainly can't hurt.

      over 4 years ago
    • geekling's Avatar
      geekling

      My family distanced themselves and I find that, if I can feed myself extraordinarilly well, get exercise and so forth I do better. I've become a raw foodie and, in truth, it helps. I do exercise as I can. Like angellinda, my finances fell apart. It is quite worrisome. I do have friends still, I ask advise of but, in truth, I've no idea who to trust and decisions which used to be easy for me are beyond me. The stress of no income with so many bills is horrid. I wrote a book on using food to get well because I simply had to feel I could do something and because eating this particular way really does help.
      http://www.etsy.com/shop/rawmaven
      and, lol, so I could have a record of what I need to do when I get mixed up. I eat about 2+ pounds of fresh plant matter daily. Sometimes more. If I skip a day, I fall apart again. I tell people that mornings are like Groundhog Day (the movie) in that I need to work all over again to feel better so that by the end of the day I am a decent and reasonable human being .. then I fall asleep and wake up in the morning needing to start all over again to be lucid.

      over 4 years ago
    • Nancebeth's Avatar
      Nancebeth

      I had a brain MRI after chemo was done because of some severe headaches and neurological issues. My MRI showed white lesions on my brain like those of a stroke victim. It has gotten a little better but I play brain games like Scrabble to keep my mind sharp, or try to anyway.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      Here are a couple of links provided by the American Cancer Society on chemobrain, they might contain some great information for you:

      http://www.cancer.org/cancer/news/expertvoices/post/2012/04/09/chemo-brain-it-is-real.aspx

      http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/chemotherapyeffects/index

      over 4 years ago
    • scrappyjen's Avatar
      scrappyjen

      I finished chemo in February and I agree that chemo brain is real. For me it is small things like I will use the wrong word (verbally or in writing). I intend to say "Saturday" but instead say "Friday" for example. It's strange because I know what I am trying to convey and then the wrong word just pops out. And then I have to explain what I REALLY want to say. Hoping it goes away but if not, I'll just try to laugh and make the best of it :)

      over 4 years ago
    • scrappyjen's Avatar
      scrappyjen

      I finished chemo in February and I agree that chemo brain is real. For me it is small things like I will use the wrong word (verbally or in writing). I intend to say "Saturday" but instead say "Friday" for example. It's strange because I know what I am trying to convey and then the wrong word just pops out. And then I have to explain what I REALLY want to say. Hoping it goes away but if not, I'll just try to laugh and make the best of it :)

      over 4 years ago
    • kayfl's Avatar
      kayfl

      YES and chemo brain sucks. I have been on chemo off and on for the past 7 years and with every course of chemo my "chemo brain" gets a little worse. I think that is the worse part of having cancer. I hate searching for words, not remembering what I went into a room for, and being confused.

      over 4 years ago
    • bgsublett's Avatar
      bgsublett

      I only had stage 1 but still had to go through 4 chemo treatments 2 years ago. I found chemo brain more severe during the year after, but it is gradually getting better. I still have "amnesia" the a.m. from the night before, especially when I get tired. I did see a interview from Dr. Susan Love on The Today Show about this (before I was diagnosed), so it didn't surprise me when I would close my eyes and try to search for a word or name when in a conversation. I just throw my arms up and tell the person "it'll come to me." I just try to have a sense of humor about it.

      over 4 years ago
    • sandikf's Avatar
      sandikf

      I was thrilled when I read an article about chemo brain cuzz I thought I was losing mine lol.

      over 4 years ago
    • rosepetal57's Avatar
      rosepetal57

      Patience...

      over 4 years ago
    • rosepetal57's Avatar
      rosepetal57

      I also play "Lumosity" ... it's great to stimulate those brain cells. :)

      over 4 years ago
    • Ears2035's Avatar
      Ears2035

      It is very real. I had chemo treatments for a year and it got progressively worse towards the end. I couldn't concentrate, couldn't focus and couldn't remember squat. I had to write myself notes to remind myself about everything. My memory retention was about 20 seconds. It gradually improves but 3 years later I'm still not as sharp as I was before.

      over 4 years ago
    • livnlrn12395's Avatar
      livnlrn12395

      Chemo Brain is real I have it. It must be the people who have not gone through aggressive chemo who are saying it does not exist.

      over 4 years ago
    • DaveWaz's Avatar
      DaveWaz

      Tammycare,
      Thank you for sharing your situation.

      Your question reminded me of two blog articles we have recently posted on the site.

      The first is about tips and tricks for coping with chemo brain for cancer patients. Reading those tips may be able to help you with your mother.
      http://www.whatnext.com/blog/posts/blame-it-on-the-chemo-brain-tips-and-tricks-for-coping

      The second is from "patient to loved ones", what they want their loved ones to know about having cancer.
      http://www.whatnext.com/blog/posts/patient-to-loved-ones-things-we-want-you-to-know-about-having-cancer

      I wish you luck in your care to your mother and relationship with your daughter. WhatNext is here for you!
      David

      about 4 years ago

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