Stories from Caregivers: Julie from NORTH CAROLINA
NC
Julie
FROM NORTH CAROLINA
I became a primary caregiver for my mom 8 years ago due to her diagnosis of ALS. To say it's hard is an understatement. I spend anywhere from 60 to 90 hours a week at her house with her. I have not had a vacation other than one night away in years. The burden of caring for someone that's close to you on a ventilator is wearing me down greatly. The fact that Mom has Medicare and a secondary insurance through a former employer does not help pay for any of her caregiving needs and she needs care 24/7 due to being on the ventilator. There have been times in the past when I have had to give IV antibiotics here at home with only a few minutes of training from the hospital. I am not a nurse nor do I ever want to be but I have been forced into it for this reason. It feels like such an injustice for someone who works so hard all of her life to not get any better care from either of her insurances. I have nothing nice that I can say at this point because I have severe caregiver burnout. I think there should be changes made so that patients like her with ALS automatically get Medicaid so that professionals can come in and care for her and I can be her. I doubt this change will help my family in time because finances have gotten so bad that if Medicaid doesn't go through for her soon she will have to come off the vent but I pray that it will help someone going forward. However I will not be surprised if all of this falls through and nothing is done.
