Mom with Stage 4 BC on rad, extremely restless

daisydays
daisydays Member Posts: 11
edited March 2017 in Caregivers #1

 

Hello,

I've been reading this very helpful forum and benefitting from information and camaraderie among caregivers, and I've finally joined in. 

My Mom was diagnosed early last year with Stage 2 BC, Her2+. She refused chemotherapy and other "standard" medical treatments. By November, her cancer progressed to Stage 4. She's a very independent and strong-willed woman, living by herself in this state. Three of four of us kids are all from different states rotate to care for her but I'm the primary caregiver and spend most of the time with her. I absolutely had no idea how tough caregiving is until I started doing it...and I have the utmost respect for caregivears. Angels on Earth. 

The main reason I jumped in is because I'm wondering if there's anyone out there seeing their loved one unable to fully sleep and be extremely restless. My Mom never had chemo nor opted for breast surgery. She has a huge breast wound with which they have started to treat with radiation. She has gone through halfway with her brain radiation, stopped that for now so that they could focus on the breast and its further cancer spread. 

She has become very angry (hurtful comments here and there), has refused to eat, drink, take meds, and do therapies (OT and PT, she has been staying at a skilled nursing facility to help her walk again -- her leg muscles have atrophied). Two nights ago they brought her to the ER and we've been confined in the hospital since then. She was admitted for critically low hemoglobin, high calcium and dehydration. Since Feb this year she has been in and out of lucidity. 

What I've noticed is that everyday she moans and groans, calling out "Mama" or "Papa" (both deceased) and when asked if she's in pain, she says no, just restless. She nods off to sleep snoring for a few seconds and then it's as though she rouses herself to wake up (or her snoring does) then starts to pound the bed with her fist in frustration, and repositions her legs (as though she doesn't know how to position them to be comfortable). She blames all the meds for making her feel this way. I see this happen all morning and afternoon long, and well into the evening. I've asked the doc to help her with this and she will be given a low dose sleeping pill. But....I'm just wondering if anyone out there has seen this? 

 

Sorry for the long entry with the background....thank you so much for your time. 

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited March 2017 #2
    Welcome

    How old is your mom, daisy? What is the prognosis?

    Dehydration can cause a host of problems and can slip up on you.

    Low hemoglobin means oxygen can't be transported to the brain and other organs and that could be the reason for her fractiousness.

    Calling for Mama and Papa: my mom did this as she got near the end and she also had low hemoglobin along with the low oxygen of COPD.

    I know this is a hard place to be.

  • daisydays
    daisydays Member Posts: 11
    edited March 2017 #3
    Noellesmom, thank you for the welcome.

    She is 58 and has received a very poor prognosis Feb of this year. Two of her doctors wanted to put her in hospice but her radiation onc saw that he could still treat her. We're still pursuing it (brain and breast radiation, with the latter she's currently going through). 

    We are still in the hospital for treatments -- hemoglobin still low but not critical anymore (they did a blood transfusion on her). She is getting IV fluids for her dehydration. They are also addressing her urine retention. 

    There are many times when I see her in so much pain (she is on pain meds but refuses to take them), that I wonder if hospice would have been a better choice for her. I asked her on her lucid moments whether she still wanted to pursue it and she said "well, we've already started so we might as well go through with it".

    She is bedridden and I think it's good she's still getting treatments and therapies at this point. But I hate the pain she's going through. If we put her in hospice now, we wouldn't know if treatments and therapies would have had their chance to help her be "independent" again and to enjoy what might be left of her life (saddens me so much to write that). Wouldn't she be on constant morphine with hospice and, if so, she would just be sleeping most of the time then? 

    Yes this is a very difficult time. I am so thankful to have found this forum with so many of you understanding exactly what I'm going through. 

     

  • Lousrae
    Lousrae Member Posts: 1
    #4
    My dad has lung and brain

    My dad has lung and brain cancer. when my dad was first diagnosed with brain cancer, he came  to a point were he was doing really bad. He would also say mean comments, and not take medicine from dr or us kids because he thought we were trying to kill him. He would hardly eat as well. We found out the reason he was acting this way was because the tumor he has on his brain was pressing against a lot of nerves due to the liquid that was forming in his brain. It was to a point he couldn't even walk or get up. once he had emergency surgery and had a shunt put in to drain the liquid, he turned back into his self. He could talk and comprehend what was going on around him, but he didn't remember anything that happened a couple weeks before that. Have doctors checked for that? Liquid in the brain? 

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #5
    daisydays said:

    Noellesmom, thank you for the welcome.

    She is 58 and has received a very poor prognosis Feb of this year. Two of her doctors wanted to put her in hospice but her radiation onc saw that he could still treat her. We're still pursuing it (brain and breast radiation, with the latter she's currently going through). 

    We are still in the hospital for treatments -- hemoglobin still low but not critical anymore (they did a blood transfusion on her). She is getting IV fluids for her dehydration. They are also addressing her urine retention. 

    There are many times when I see her in so much pain (she is on pain meds but refuses to take them), that I wonder if hospice would have been a better choice for her. I asked her on her lucid moments whether she still wanted to pursue it and she said "well, we've already started so we might as well go through with it".

    She is bedridden and I think it's good she's still getting treatments and therapies at this point. But I hate the pain she's going through. If we put her in hospice now, we wouldn't know if treatments and therapies would have had their chance to help her be "independent" again and to enjoy what might be left of her life (saddens me so much to write that). Wouldn't she be on constant morphine with hospice and, if so, she would just be sleeping most of the time then? 

    Yes this is a very difficult time. I am so thankful to have found this forum with so many of you understanding exactly what I'm going through. 

     

    Pain relief

    You don't have to be on hospice to get help with the pain. Just be firm with the doctors that what they are doing is not handling the pain.

    Morphine is often used to treat cancer pain and it not only used when a patient is terminal.

    It is also fair and smart to regularly ask for assessments on progress in curing the cancers.

    Your mom is fighting a tough fight and you are, too. Remember to take care of yourself, daisy.

  • daisydays
    daisydays Member Posts: 11
    #6
    Noellesmom said:

    Pain relief

    You don't have to be on hospice to get help with the pain. Just be firm with the doctors that what they are doing is not handling the pain.

    Morphine is often used to treat cancer pain and it not only used when a patient is terminal.

    It is also fair and smart to regularly ask for assessments on progress in curing the cancers.

    Your mom is fighting a tough fight and you are, too. Remember to take care of yourself, daisy.

    Noellesmom, 

    Noellesmom, 

    Thank you you for the reminders. It's been a constant struggle getting my Mom to be on any meds because of her refusal. She also tends to up her threshold level for pain so that she only really agrees to take a pain med when she can no longer take it. It's been a frustrating cycle. 

    I've asked for a brain scan to see progress of brain radiation after they made decision to hold off on it (they assessed physically and said she seemed to be responding well to it), and proceeded with breast radiation to stop its progress. They plan to return to brain after breast and they will make the scan "at some point". When my Mom was off brain radiation for four days, she started displaying symptoms of confusion, pain...

    Thank you you for the reminder and reassurance it's ok to ask for assessments. I kept waiting on occasions for fear of being pushy. 

    I feel guilty when I take breaks, but you're right it's absolutely essential to be able to care for another. 

  • daisydays
    daisydays Member Posts: 11
    edited March 2017 #7
    Lousrae said:

    My dad has lung and brain

    My dad has lung and brain cancer. when my dad was first diagnosed with brain cancer, he came  to a point were he was doing really bad. He would also say mean comments, and not take medicine from dr or us kids because he thought we were trying to kill him. He would hardly eat as well. We found out the reason he was acting this way was because the tumor he has on his brain was pressing against a lot of nerves due to the liquid that was forming in his brain. It was to a point he couldn't even walk or get up. once he had emergency surgery and had a shunt put in to drain the liquid, he turned back into his self. He could talk and comprehend what was going on around him, but he didn't remember anything that happened a couple weeks before that. Have doctors checked for that? Liquid in the brain? 

    It's a blessing

    to get this information from you regarding the liquid. I've asked her radiologist to please check this when they check her new X-rays and MRI scan. I wouldn't have known about it until you mentioned it. a heartfelt thanks to you and to Noellesmom for the guidance and reminders. 

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