• Posted by Amanda on December 30, 2021 at 7:46 am

    As caregivers it easy to forget to take care of yourself. At times, I don’t think we just “forget,” I think we simply believe we don’t have time. Taking car of our pALS along with family, home and work responsibilities there just aren’t enough hours in the day. What can & will you try to do differently in 2022 in order to take care of yourself along with your loved ones? Will you reach out for support? Do you have friends and family that can help? Share your ideas on self care!

    Mary replied 2 years, 4 months ago 2 Members · 2 Replies
  • 2 Replies
  • Mary

    February 1, 2022 at 7:09 pm


    Right now it is all so overwhelming.  We searched for over 18 months for a diagnosis. September 2021 changed our life as only those who have had this diagnosis understand.
    I am forming new habits at home and work to make time for myself.  I am getting up an hour earlier to have some quiet time to try to relax and come to terms with losing the love of my life after over 50 years to this horrible disease.  At work I made a sign and put it on my desk that says “breathe..just breathe “.

    One day a week I have promised a friend we will eat lunch together. She is a great sounding board and allows me to share the overwhelming sadness I am feeling.   Also an acquaintance of mine reached out when we received diagnosis to offer help and information.  Her husband passed 2 weeks after our diagnosis from bulbar ALS.  We are staying in contact and it has been an unbelievable help to us both.  She understands the fear, sadness and frustration.

    Please share any ideas .


  • Amanda

    February 2, 2022 at 7:37 am


    I’ve been sitting here for about an hour thinking about how to respond. Honestly, I don’t think there are any words that can take away your sadness and fears. I wish there were. I would give anything, and I mean anything, for that to be the case!

    As a caregiver, and/or a pALS, there is a process that we all go through hopefully leading to acceptance. That sounds so cold to me at times, but I suppose it is human nature. Some refer to it as the Grieving Cycle and it has many other names, but basically it includes different stages: Denial, Anger, Bargaining, Depression, and Acceptance. How we move through these stages and handle the emotions will be dependent on many things such as our support systems, belief systems, faith, ect. I think you are doing positive things by education yourself and surrounding yourself with people who will understand what you are experiencing. Also, try to remember that many people don’t know much about ALS and they may say things that irritate/confuse (insert appropriate adjective) us but they are trying to be helpful. Most people are just uncomfortable with the topic of terminal illness and they may limit interaction because they don’t know what to day or do, and not because they don’t care. Try to give consideration to what you need or could benefit from and clear ask. If you would like company – ask friends to come over. If you want to talk about anything except ALS, set those boundaries ahead of time. If you need a few hours to go out and take care of yourself ask for help. There also may be some support groups, even ones online for caregivers and pALS that you might find helpful. You could always attend 2 or 3 times before deciding. I always found the first and second sessions of counseling of any kind to be overwhelming, but by the third I knew if it was a good fit for me.

    I guess I could rattle off all kinds of advice, but honestly, it really depends on what you need in your situation. Try to vocalize what you need and ask for it from friends and family. Most want to help, and many will do their best. Some will be so uncomfortable they may not be able to help. Don’t take it personally, just know they are struggling too. It may not be the same struggles that you and your family are experiencing.

    I don’t know what your husbands progression is like or what your needs are at the moment. Please know that you can ask anything on the forums and most of the time someone will chime in with their own thoughts and experiences. We have an amazing and supportive community. Also, if you haven’t already looked into it, reach out to the ALS Associations and other organizations in your community. You may be surprised at the support and education they can provide.

    Be sure to take care of yourself to the best of your ability. Reach out for help when you need it.

    There are also some other groups on social media if that is more your speed. Facebook has some groups I am learning about thanks to one of our members. I’m sure we can provide a list if you are interested.

    To our other community members- please please chime in!! All of our experiences are unique and you may have something valuable and helpful to share.

    • Mary

      February 3, 2022 at 7:33 pm

      Thank you for your kindness and suggestions.

  • Kathleen B (Katie)

    February 5, 2022 at 3:13 pm

    An early May 2021 diagnosis for me “changed our life as only those who have had this diagnosis understand.” (Thank you Mary, your words are a spot on description!)  …and I have been with the love of my life for just 37 years…hoping to make it to 40 at least!  My struggle at the moment is the fear that something will happen to my husband, because he is not as good at the self-care things as I would like him to be…he is still working also, plus added on many of the ‘daily duty’ things (laundry, cooking, cleaning) that are now very difficult for me (due to both legs not functioning well already).  I do like your ‘breath’ idea remind–I’ll model it for self & he may adopt it!  Thank you also Amanda for the list–it will be useful…I recently saw a similar item about pALS & caregivers who actually carry a ‘grief backpack’ with them much of the time (early on especially it seems to me)…but we must remember to take it off for a spell now & again too!  Sometimes, even understanding others will help us carry it at times also–as you may have found in a friend who just lost her husband.  I have Faith too–can pray for all pALS & caregivers!

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