ALS News Today Forums Forums Living With ALS When Should They Keep Their Mouth Closed?

  • When Should They Keep Their Mouth Closed?

    Posted by Amanda on July 29, 2022 at 11:42 am

    When I first started taking care of my father when he had ALS, I referred to myself as his caretaker. I really didn’t see the problem with that term, until much later when a colleague gently educated me about the terms caregiver and caretaker. Thank you, Dagmar.
    I was a little embarrassed about my oversight and really thought it should have been common knowledge, but it is always better to learn and change than to continue using words or terms incorrectly. I would hate to offend anyone in our community.
    Are there things that friends or family say to you that sound insensitive or inappropriate about ALS or your journey? Are there things that you don’t think others should say to pALS or caregivers of a pALS? Are there words that should not be used? Are there questions that should never be asked?

    fran-finney replied 1 year, 1 month ago 6 Members · 6 Replies
  • 6 Replies
  • jerry-fabrizio

    July 30, 2022 at 1:50 pm


    For me I do not like questions like: what are you going to do when you need a feed tube?  Or, you know in while you will not be able to breath.  I think we all know these things are coming but for me I take each day and try to do my best to fight.    I know bad things are coming I watched my mother die of ALS.  I want to fight; not think I don’t have a chance to fight.  I will die one day we all will die someday, but not today, hopefully…  Help me fight don’t tell me I can’t.

  • kathleen-b-katie

    August 2, 2022 at 8:21 am

    Well,  I am just 2 years into diagnosis, and I have yet to come across family or friends who even seem to know what it is…so I have not had any offensive remarks or questions yet.  However, I do often hear “you look si good” (and I am in a chair now, no longer walking or standing), so I guess the concept of this being an ‘invisible’ disease (aka Tyoe 1 diabetes) rings true in the early stages of limb onset ALS?  I have no problem answering questions when asked, but I do not go into detail(s) on a personal level —I prefer to ‘textbook’ and ‘the reality is’ kind of answering responses. I might add, these are longtime friends & family members who inquire, not unknown persons (so far).  So I do th ink they are looking into additional info in their own as well—and I appreciate that about my circle of acquaintances !

  • romy-h

    August 3, 2022 at 8:03 am

    I was so careful to tell my twin who had ALS only kind things directly about her care. I told her it was about love and never to feel bad when she thought it was too much. I didn’t refer to myself as a care provider or anything. He fiancee was her full time care provider as it was stated by her. I was simply a loving twin that helped her all I could. Working a job cleaning homes and apts 10 jobs a week…then bussing two weekends a month both ways taking weekends to help give her fiancee time. Her eyes would sparkle and she would say my Romy is here! I got at most 4 days off a month on bad feet. I told her she was beautiful, doing her hair, nails and bringing little gifts. When she was moved over to her daughters, it was too much for them with full time jobs. She was in bad shape and my older sister came with our younger sister and her own son. My older sister took over her care. She gave her great care for 6 days and said something so cruel I can’t believe my twin sister did not say anything when she heard it. I only know how it must have made her feel. She was told that she looked like our mother. Understanding that everyone with ALS is a beloved family member! Treating them with kindness and love with all of your ability is the most important thing you could possibly do. Their time is limited and they are going in front of you. Our mother was disabled in a wheelchair for over 30 years since she was 24 years old and died at 55. To be compared to a woman who was unable to talk properly and was in a wheelchair for three decades? That was so unkind. Regardless of how you term yourself as a caregiver, it is important to remember that everything you say is heard by a person with ALS. They have nowhere to go with their hurt. I was able to contain myself properly around my twin and have no regrets. I can’t say the same for many people that got around her. No one is perfect but please everyone understand, a person with ALS has in mind that needs your love more than anything else.

  • Amanda

    August 4, 2022 at 11:29 am

    Wow, I am learning a great deal from all of you that are sharing.  So many things that never even crossed my mind. It is amazing how much we can learn from each other.


  • lpilarcik

    August 4, 2022 at 2:59 pm

    I tend to extend a lot of grace to MOST people with their questions/comments and do not get offended easily, especially with close family and friends, IF we are having a face to face conversation.  Let’s face it, it can cause some major discomfort for some when they are staring at a person with a terminal illness and we’ve all pt our foot in our mouths at some point!  I have been an open book with people in my circle from the very beginning and have encouraged questions because it seems to cut the tension a little when they see that I am open about my diagnosis/prognosis, but thats just my way  of coping.  I do get a little offended when people I haven’t seen for years, who were never close friends, reach out on social media asking how I am. I don’t mind if they reach out to say they heard about my diagnosis and are thinking about/praying for me, but I feel like they are just fishing for info for gossip when they ask how I am.  Maybe I’m wrong for feeling that way??!!

  • fran-finney

    August 4, 2022 at 6:09 pm

    I love Lisa’s answer. I was caregiver for my husband for the 6 years he lived with ALS. Eventually we got used to people saying or asking the “wrong things”, although it was always difficult for both of us when overly “helpful” people tried to give us advice on how to “cure” Hal’s ALS, telling us we should try meditation, a particular vitamin regimen, Reiki, acupuncture, breathing exercises (after he had a tracheostomy!),etc. But despite those “helpful” bits of advice, we became more appreciative of any expression of interest by friends and family. Especially the friends and family who remained close and supportive throughout my husband’s progression, to the the very end.

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