As ALS progresses, more and more assistance is needed. First it’s to tie your shoes. Then it’s to brush your hair. Pull up your pants. Get dressed. Stand up. Transfer to a wheelchair. Go to the bathroom. Bathe. Eat. Assist with bodily functions.
Family caregivers are quickly overwhelmed, having to learn the complicated medical care needed and trying to balance their relationship with caregiving. Some people are fortunate to have family members and friends nearby to help with caregiving. We didn’t. We had moved to another state when I was offered a promotion, and the nearest family members and friends were literally 1000 miles away.
Fortunately, thanks to Medicaid and the State of Oregon, Mary was approved for a significant number of caregiving hours, starting with 40 hours a week (so that I could continue to work). Only three months later, six months after diagnosis, that was bumped to 15 hours a day, 7 days a week, because of how rapidly the ALS progressed. It often took two people to put her in bed or get her up in the morning, making sure that her breathing wasn’t compromised, that her fragile neck was supported, that she wasn’t injured and neither were we.
There is a nationwide severe lack of caregiving agencies willing to take on a patient with ALS. It is critical that the agency have “nurse delegation”, meaning that an RN has to be willing to train and put their license on the line so that a CNA or other caregiver can administer medication, clean the stoma for the feeding tube or trach, put formula in the feeding tube, know how to use the various medical equipment needed, from a bipap to a Trilogy to a Cough Assist.
When you add in living in a rural area (not even an hour from Portland), our options for caregiving agencies diminished to one. ONE agency willing to do nurse delegation and provide caregivers to our home. More than once, we got caregivers that I had to fire after one day, or one hour, because they had no idea what they were doing, or because they felt the need to try to share their religion and convert Mary, or because they fell asleep on the couch and didn’t hear Mary asking for help. Several times, I showed up at the agency’s office to meet with the manager and file formal complaints about their staff.
Finally, we got a team of 3 or 4 good caregivers. That lasted a couple of months before one decided the disease had progressed to a place they were no longer comfortable with, and one other was pulled off of Mary’s team because their attitude changed. There were days I couldn’t go to work because a caregiver called out sick and there was no backup, despite the fact that I was constantly requesting that they have five people on Mary’s team to cover those situations. On those days, Mary often had to stay in bed because it took two people to safely move her to her wheelchair.
We had one consistent caregiver that I could trust with Mary’s life, that Mary absolutely loved, who had previous experience with ALS and was quick to learn and adapt to the disease progression. ONE caregiver. And me.
For those whose insurance doesn’t cover outside caregivers, the annual bill for caregivers can be over $200,000 out of pocket. Medicaid allowed Mary to stay home longer by providing outside caregivers so that I could continue to work to keep our home. Without Medicaid, I would have had to quit my job to care for her, which would have quickly made both of us homeless. And that is just the cost for caregivers; it doesn’t include the cost of medical care and equipment.
There is a reason ALS is called “The Bankruptcy Disease”.
