Won't eat or drink

Options
Krusty
Krusty Member Posts: 3
in Caregivers #1

Hi,

I've just discovered this forum, and have been reading about others experiences. However, I haven't found any posts that are similar to what I'm currently​ experiencing. My Mom has stage 4 lung cancer, she is EGFR+ and is currently on afatinib. Since her diagnosis, her appetite has been poor, but in the last few weeks she has been refusing to eat or drink very much. When pushed, she will put the food/drink in her mouth, but not swallow it. This can go on for ages (I'm talking half an hour to an hour), when she eventually needs to cough, finds her mouth full, then chokes on whatever was in her mouth. To look at her, she does not seem to be at the end stages of the disease. So why is she doing this? It is so frustrating. No amount of encouragement will make her swallow when she doesn't want to. 

Has anyone ever come across anything like this?

Thanks in advance

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    Options
    What does her doctor say?

    Do not try to force her to eat. Offer anything that sounds good to her but go no further. Very easy to aspirate solids or liquids and she does not need that.

    Ask the doctor about hospice. They can help you with many issues.

  • Krusty
    Krusty Member Posts: 3
    #3
    Options
    Thank you, Noellesmom. The

    Thank you, Noellesmom. The doctor sent a speech therapist to have a look, and they believe that the swallowing mechanism works. We will be seeing a dietitian on Friday, but it's pointless as she isn't eating anything. Hospice have also told us to just encourage. In fact, they sent one of their carers over to give us some respite (between my brothers, my sister, and I, we are looking after Mom 24 hours a day) one morning, and she wasn't able to encourage my mom to eat anything either. All they could do was give us the "just in case" drugs for end of life, but as i say, my mom doesn't look like she is at that stage yet.

     

    Mom used to drink some Ensure, but now refuses that too.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited March 2017 #4
    Options
    Does she say why

    She doesn't want to eat? If it is simply lack of appetite, there telemedicine to stimulate appetite.

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #5
    Options
    Your mother

    I know how hard this is for you and your family.  But it seems like to me that she has just given up and I hate to say it, but that is her choice.  You should try to force her to eat because Noellesmon is right about the aspiration and choking on the foods.  Having been in such a situation with my husband I know how hard it can be.   The only other thing would be a feeding tube, but that it still her choice, not yours or any other family member.  When my husband say no more treatments, our sons and I didn't try to talk him out of it.  It was his choice, although he did use his feeding tube all the time and when he couldn't do it anymore, I did it.  And yes he was on hospice in-home not in-patient.  They provided everything that was needed pertaining to his cancer which was a great help.  He was on hospice much longer than anyone thought he would be -- almost 2 years and they were getting ready to release him when he started going downhill and downhill fast. 

    The drugs hospice provides is for pain and as the pain gets stronger, she will definitely need them.  Pain medication is not just for "end" stages but can actually help.  My husband never wanted to take them because he didn't want to get addicted but his doctors told him he needed them to help heal and that if your body needs pain medication you can't get addicted.  It is when body doesn't need them, that a person gets addicted.

    Wishing you and your family peace and comfort

     

     

     

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited March 2017 #6
    Options
    Trying to force someone to eat...

    Isn't fun for anyone involved. I'm sorry you all are going through this. There's the danger of choking or aspiration, even if someone can swallow (Stockpiling food in one's mouth results in w-a-y too much to try to swallow on a good day, even more dangerous when feeling ill). 

    Being fed through a tube, via nasal or gastric approach, can still result in aspiration. Plus, it bypasses anything that's pleasant about eating. 

    I don't know that I'd classify refusing to eat as "giving up." It takes a lot of physical, emotional, and even spiritual energy and focus to eat (Heck, even breathing can be hard work). When my spouse decided it was too exhausting to eat, we mostly skipped meals. Little spoonfuls of pudding, a smoothie, ice cream or a (real) milkshake worked OK. We also skipped the Ensure type drinks (We just never "bought into" that stuff... and yes, we've read the promo info). One day, even half a spoonful was too much. It wasn't about giving up, it's just that the body couldn't and wouldn't - therefore probably shouldn't - do it. 

    If there's something your mom would like to eat, even ONE SMALL SPOONFUL and that's it, great. If not, staging a nutrition battle even with the best of intentions is pretty much (and I hate to say this) bullying. 

    I was faced with a similar situation at the end of my dad's life. Not only did he not want to eat, he didn't want to take his meds either. His caretakers were bullying him to eat and be medicated and it wasn't working. They wanted ME to do it, because being his daughter I could do things they couldn't. What?! Fortunately, I explained to his physician that I was not about to wrestle a frail little old man to shove food or meds down his throat, and we both decided, "Then let's not." We spent our time and energies on other things.

    It's hard when people we care about are at this stage, heartbreaking, even. Food is how we connect, show love, and nurture one another. It's a source of pleasure, satisfaction, and creativity. It involves all of our senses. Until it doesn't. 

    Hugs to you all - 

  • Krusty
    Krusty Member Posts: 3
    #7
    Options
    Thank you to everyone for

    Thank you to everyone for your kind words and advice.

    When asked, she just says that she "doesn't feel like it". She doesn't want anything, not even the foods she used to love. She will agree to eat something, say baked beans, I'll go and make/heat it, then she will  refuse to eat any of it. She tells me that she has not given up, so I'm not entirely sure what I'm supposed to do. We are having to crush/dissolve her medication in water, otherwise she just holds it in her mouth. 

    The oncologist said that the only thing we can do is encourage her. She said that the nasal feed would not give my mom all the nutrients she needs.

    In the meantime, she's losing weight, and probably dying in front of my eyes. Cancer is such a hard road to travel down.

     

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    edited March 2017 #8
    Options
    Understood

    Spend your time with your mom reliving memories, watching television...whatever you want to do together.

    This is the watchful waiting period. You can either embrace this as a blessing in which you understand your wise mother is allowing her body to slow down and prepare itself or you can stress about the lack of food and make both of you miserable. Take a step back: if a friend was in this situation you would tell them all will be well. And it will.

  • slzcaregiver
    slzcaregiver Member Posts: 12
    edited May 2017 #9
    Options
    Appetite Encouragement

    My father has been struggling with the side effects of chemo, and he really has no appetite (stage IV with bone metastasis). The doctor prescribed Magnese (or something like that) to help increase his appetite. Seems to help a bit. You can also try CBD Oil, which helps to an extent, to increase the appetite. Otherwise, she could just be in that period where her body is basically shutting down. My step-father hardly ate at all the last 3 weeks of his life. The night before he passed away, he wanted vanilla ice cream. Thankfully we had it. He ate two bowls (about 3 scoops total). He wasn't really able to talk, but we stayed up until about midnight (Mom, Dad, me and Dad's best friend), singing Hawaiian songs, and talking about memories from the past. It was a beautiful, magical, wonderful night. He passed away about 3 hours later. I am so sorry you're having to deal with this. Holding you in my thoughts.

Discussion Boards