ALS News Today Forums Forums COVID-19 and ALS Coping without Caregivers

  • Coping without Caregivers

    Posted by Dagmar on April 13, 2020 at 1:00 am

    Hello everyone! Hope you’re all staying safe and doing well. The world crisis continues on, and, we are all coping.

    I know many of us rely on caregivers and are facing challenges in their absence. I’m fortunate in that my husband is my caregiver and is here sheltering-at-home with me. But for any pALS who rely on outside caregiving agencies, any disruptions to their schedules can be a difficult adjustment.

    Are you receiving care from family or friends in place of your usual caregivers? Or are you coping without any caregivers at all? Tell us how you are doing. Do you have any tips for our forum members who may be in a similar situation?

    Dagmar replied 4 years ago 2 Members · 2 Replies
  • 2 Replies
  • Darrin James

    April 14, 2020 at 3:16 pm

    I still have nurses that stay over night . And day time help . I am afraid of catching Coronavirus from one of them . I have been meaning to ask my wife .

    We live near Boston . Boston has the 3rd most Coronavirus cases . 25,000 . I don’t want to die when we are very close to a treatment or cure .
    I am also concerned that I would lose our nurses , but I guess it wouldn’t matter if I die

    , from catching the Coronavirus from a nurse .



  • Dagmar

    April 14, 2020 at 4:40 pm

    Darrin – – thank you for letting us know how you are doing. I think I speak for all our forum members in sending you our empathy and wishes for you to avoid catching the virus.

    I share with you the worry about our health care workers and not wanting to lose them… as well as, NOT wanting to experience both ALS and virus symptoms at the same time! Keep practicing your breathing exercises and keep those lungs healthy! We wish you well.



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