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  • Which resources have helped you the most as a caregiver?

    Posted by Dagmar on May 31, 2022 at 1:00 am

    Spouses and family members who step in and take on the role of caregiver for their loved one who has ALS – – are most likely first-time caregivers – – and not prepared for the many challenges ahead.

    What or who helped you the most as you began your new role as a caregiver?

    Was there a helpful resource that you could recommend to others? Who did you go to for answers? What key things would you now recommend to other first-time caregivers?

    Dagmar replied 8 months ago 5 Members · 8 Replies
  • 8 Replies
  • Dagmar

    March 20, 2023 at 11:24 am

    I recommend our caregiver members check out the columns written by Kristin Neva and Juliet Taylor

    Both write about their experiences, share tips, and are inspiring to read.

  • Dagmar

    June 12, 2023 at 4:22 pm

    Did you know that the website Your ALS Guide has written guidelines (plus videos) especially for paid caregivers? It can be found here:

  • Dagmar

    August 22, 2023 at 12:19 pm

    Do you find that advice shared in social media groups (like Facebook, Instagram, etc.) has been helpful for you? Do you trust the advice or check elsewhere …just to make sure?

    • afihtan

      September 19, 2023 at 9:10 am

      Use advice from a forum as a base and yes do further research. Each experience is individual.

  • Karen Goldhirsh

    August 27, 2023 at 2:31 pm

    Check out Your ALS Guide website.  My husband who had ALS for 5 years.  I researched the many websites available but not one that was concise and understandable.  We saw a big gap in the education for the caregiver whether family member or paid caregiver.  We raised funds to support the Your ALS Guide.  I hope patients and their caregivers find it helpful.

    • Dagmar

      September 19, 2023 at 12:10 pm

      I agree. This is an excellent website that has practical advice for ALS patients and their caregivers.

  • Lorraine Larkin

    August 29, 2023 at 3:25 pm

    <p style=”text-align: left;”>My husband was diagnosed over 3 years ago. The ALS clinic specialists and doctor were all very helpful, and for us they were over an hour away and over state line. The resource that we found most helpful was my husband’s palliative care doctor. Everyone with ALS should find a good local palliative care doctor.  She has made a big difference in helping us navigate many issues related to this disease.</p>

  • Gideon

    September 12, 2023 at 6:22 pm

    I tried to get help for my wife, but unfortunately, all the companies that I hired claimed to be Expert in ALS, but had no experience or knowledge about ALS,

    I was so frustrated, As a caregiver I have a lot of health issues I could go to a Dr for more than 3 years, and I am falling apart

    Her Family  does do anything, as her brothers said that she is dead ready, there is no need for help,

    Thank heaven for good neighbors they go shopping for me

    So sad and so mad


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