Christine Slugocki
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I found the most exceptional caregiver for my mom on http://www.care.com. It’s a free service but you can pay for extras like background checks. I searched for people with experience in mobility issues, transferring, Hoyer lift experience, toileting issues. Many of the caregivers are CNAs who work part time at nursing homes and are supplementing their income. We had many interviews and several caregivers, some good, some not so good, one Angel sent from Heaven. Luckily my mom had the resources to be able to pay out of pocket because she went from only needing help for a few hours when family members had to be away to 24 hours a day the last few weeks. The caregivers, with their experience, were much better at transferring and toileting than family. It was also easier for mom who didn’t want her kids and grandkids have to see her like that.
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ALS of Michigan in the metro Detroit area. They have psychologists, loaner closet, resource recommendations, and they provide funds to pay for several hours of respite care per month. They were the ones we could always depend on for help and advice.
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And the Caregiver Action Network that is mentioned in one of Dagmar’s previous posts. They have both online and phone chats. I’ve recommended it to friends dealing with ALS, stroke, and Alzheimer’s and heard positive feedback.
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I know that Medicare changed it’s rules this year and they will now approve up to 28-15 hours per week of home health aides – Caregivers. When my mother needed more and more care, our ALS clinic took all the necessary steps, wrote letters, etc., but NO agency would even discuss it. One of the many requirements for Medicare approval is to have medically necessary skilled home care — could be an RN visit every few months– just to certify care is necessary. Even the RN sent out by the clinic told us Medicare would never pay.  It’s too late for us now but it would be great if someone with a big voice and bigger audience could publicize and/or educate Doctors/Nurses/Clinics/Medicare Approved Home Health Agencies, etc.
Rick Jobus has written several excellent columns on the subject. The latest I could find is: https://alsnewstoday.com/2019/05/22/surviving-medicare-home-health-agency/
As far as I could tell from reading the Medicare site, the reason things have changed is that there no longer needs to be any expectation of recovery or improvement. There are many hoops through which we must jump and many requirements to be eligible but an ALS diagnosis should, in my opinion, be automatic.
My mother refused more hours of caregivers because, as an RN herself who did home care during the last several years of her career, she KNEW that Medicare doesn’t cover home health aides. She wouldn’t believe us, even when I showed her Rick’s column, and the Medicare changes.  It was heartbreaking because even though she lived with family, there were still times she was all alone and terrified…but afraid she’d run out of money too quickly.
PALS and cALS should NEVER be put in this position! The only positive thing I’ve seen publicly is the many, many tv ads offering Medicare supplements that will now (again, too late for my mom) pay for home health aides, meals on wheels, etc.
Being a CALS or even just a family member (such as me who lives far away) is obviously not as bad as being a PALS but it’s a close second. My anger with the lack of progess in finding not just a cure but even any worthwhile treatment grows and grows.
My best wishes to you and all the PALS and cALS on this forum. My heart hurts for all of you and my admiration is boundless.