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    • #13316
      Dagmar Munn
      Keymaster

      Are you working the ‘double shift’ of caring for children as well as a spouse or family member who has ALS? Do have any support to help you? What is the hardest part about being a double caregiver?

    • #13454
      Lisa Days
      Participant

      Yes, I feel we are. Mom does not sleep,she more like naps. Constantly moaning or humming for you to come to her and once your there she can’t tell you what she wants. We go through the list, bathroom, pillow, fan, tv, etc and nothing, but then the other one will go through list and then she will pick something. We tell her mom we have to sleep to be able to care for you tomorrow, but she just keep doing the samething. We are trying to apply for help it just takes times and when it comes it”s just a few sessions during the day. We are at the point to have to hire help, cause we will eventually have to go back to work.

    • #13459
      Dagmar Munn
      Keymaster

      Lisa, I feel for you and your family members — and for your Mom, who can’t communicate to you what she wants. ALS can be so frustrating; on both sides of the disease.

      Have you contacted your local ALS Association Care Coordinator? http://www.alsa.org/community/

      The Care Coordinator can put you in touch with local agencies who have volunteers to provide respite care… Here in Arizona, our ALS Association has funding that pays for 4-months or so of in-home care to help families make the adjustment.

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