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    • #21700
      Amanda
      Keymaster

      I remember when many of my father’s friends found out that he had ALS they had no idea how to respond.  Of course, at that time I had little empathy for them and in fact their lack of friendship kind of ticked me off.  After years and years of my dad being there for them, showing up when times were tough, pulling their vehicles out of ditches during storms, donating historical guns to fundraisers, organizing fundraisers when someone’s child had cancer, relocating friend’s children’s so that they could be together while his friend was sick, driving across the country to help a friend in need. Really, my dad’s friendship had no limits and he had no expectations of favors or kindness being returned.  In his eyes, if you had the means to give, then you gave what you could…But, how could some of his friends just not “show up?”  How could they not visit? How could they not be there?

      Of course, a few were.  Some who understood terminal illnesses.  The ones that knew there were no words to accurately express their sense of loss and grief.  But there were a few that I expected that didn’t. One kept calling and promising, but he never showed.  My dad kept asking about him and waiting for his promised visit. I can still recall the disappointment in my father’s eyes.  That look will forever be burned into my memory.

      So, for all those people who don’t know what to do when they learn that a friend or a loved one has ALS or any illness here is my advice.  Just do something.  Think before you speak. Do a little research. Understand what that illness is and isn’t – if it is a terminal illness then don’t say things like: “Feel better soon!”  or “Get well soon!”  Even though you have good intentions, those words will likely show that you aren’t hearing what’s really happening.  Instead, listen and learn.  Ask questions … Be there.  Ask “What can I do?”  Keep showing up!! Include your friends with ALS and their caregivers – modify activities so that they can continue to participate.  Here is a list of ideas and ways to help your pALS and caregiver friends from the ALS Association Website:

      1. Stay in touch.ALS is a journey, find ways to be present all along the way.
        A simple card, email, phone call, or visit can mean a lot.
      2. Do the little things.
        Living with ALS can be overwhelming, making daily tasks challenging.
        Bring a meal, walk the dog, mow the lawn or take out the trash.
      3. Include the person living with ALS in activities.
        ALS can feel very isolating for everyone involved, especially the person who is diagnosed.
        Encourage them to keep participating in daily life, continue with hobbies, and engage with friends and family.
      4. Be specific when offering help.
        Life is busy, be honest about what you can and can’t do to help.
        Run an errand, drop off a meal, or help drive kids around to activities.
      5. Learn about ALS.
        Do what you can to understand the disease and what to expect.
        Read up on the details, attend a support group, or meet with your local ALS Chapter.
      6. Keep showing up.
        The ALS journey is different for everyone.
        Let them know you are there and will continue to be through the entire journey. And do it.
      7. Offer a shoulder to lean on.
        ALS can create stress for the entire family.
        Be sure to offer your support and friendship and be present when you’re needed most.
      8. Build a network and coordinate support.
        Providing the best quality of life for people living with ALS and their families can take a village.
        Recruit friends and family members, assign specific tasks and schedules, set up a Care Connection group.
      9. Keep all family members in mind.
        Remember, ALS impacts EVERYONE in the family, regardless of age.
        Spread the love. Offer to take the kids to activities and help out with elderly relatives.
      10. Join the Fight.
        We have renewed our pledge to do whatever it takes to make ALS a livable disease until there is a cure.
        Whether it’s volunteering, fundraising, donating, or becoming an advocate, there are many ways to get involved in the broader fight against ALS.

      What other ways or advice can you give friends and loved ones to help them “SHOW UP” for pALS and caregivers?

       

       

      • This topic was modified 3 months, 1 week ago by Amanda.
      • This topic was modified 3 months ago by Kevin Schaefer.
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