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Good morning (Florida time) Caregivers!!
Outside of learning that your loved one has ALS, what has been the most difficult part of being a caregiver?
Have you struggled with working with insurance companies to get the adaptive devices or treatment your loved one needs?
Have the medical bills been clearly explained and is there assistance for what insurance does not cover?
Did your pALS medical care team provide you with information about ALS and resources?
What challenges or struggles are you currently facing? What could you use more information about or support with?
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Financially has been the biggest challenge. When my husband’s ALS advanced to where he could no longer work, we lost his income and we lost my income. As full time caregiver at home, I slept in 2 hour shifts so that I could give him breathing treatments and whatever else he needed. We are so grateful for every moment we had with him at home even though it is not the life we envisioned. I wish an organization existed to help families like us with financial burdens. We need $12,000.00 to save our house and there was a time where finances were fine but then entered ALS, the greatest thief of all time. ALS took our loved one and left me without a husband, left our kids without a daddy, left our finances in ruins and left the greatest sadness in our hearts. We are grateful for every day we had and we fought with the insurance companies for approval of Radicava. I remember thinking how awful it is that we have to spend all this time getting the insurance company to approve this medication when we could be using this valuable time to take care of our loved one. The ALS dr told me to approach Radicava approval as a full time job. She said to sit at the kitchen table at 9 am every morning and stay in the phone to the insurance company everyday until 5 pm for 2 weeks straight. She said to become their biggest nightmare and let them know that I am not going away. Well, she was right bc after 2 weeks of calling the insurance company and staying on the phone from 9 am to 5 pm talking to every person I could in the insurance company plus the nurses at Mitsubishi Pharmaceutical, the manufacturers of Radicava, I gained all the answers to reply to the insurance company’s reasons for denying the medication. Finally, I got approval but then ended up spending another week, now Week3, getting approval to do the Radicava IV infusions at home rather than trying to transport a completely paralyzed person to an infusion center 10 days a month. If the insurance company could spend just one day in our shoes they would see how difficult this is and how unreasonable to force the very difficult transportation process to an infusion center when a patient is trached and vented. Finally the battle paid off and infusions took place at home. The muse came to access the chest portal once a month. We then gave the IV transfusions ourselves at home. We learned how to do a lot of medical procedures such as changing the trach, replacing the feeding tube when upon rare occasion it would come out, using an AMBU bag, reviving a patient 8 times over the course of several years, etc. No matter what, we would do it all over again for the opportunity to have our loved one at home♥️
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Financial for sure. Planned for retirement well enough for our satisfaction—but NEVER did it include handicap accessible home renovations & transportation need costs, etc!!! We were caught in time of inflated house values—TOTALLY unable to ‘downsize’ our home AND afford a new mortgage PLUS renovations needed. Goodbye retirement anything…I’m the pALS, husband the caregiver…I just retired in 2019, he just in 2022. Yes, kids and grandkids, but this is not/was not our notion of retiring & enjoying family time together! Devastating, degrading, disgusting disease that destroys. Biggest challenge: that this does not affect more politicians, insurance people, big pharma etc. who make policy & decisions without ANY notion of the reality of the disease process on life & living!
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