FROM OUR EXPERIENCE taking care of our son, professionals saw him only during an office visit or home visit, so they had just 15-minute snapshots separated by weeks and months. These professionals didn’t see what was going on every day. The counseling just wasn’t there.
Health practitioners are uninformed
The information that the medical professionals imparted was just whatever they learned from books, not from living with an ALS victim and seeing day-to-day issues and progressions. Doctors who diagnose the patient should provide a full class or classes, if you will, on everything related to ALS, plus lots of printed literature on all the issues, resources to turn to, and practical lessons on using equipment. But they don’t.
When our son was taken by ambulance to the ER because of breathing difficulties, I was shocked to see the nurses pick him up like a sack of potatoes when they had to transfer him to a commode. They didn’t know what they were doing. They had no idea how to handle head drop. They tried to control and limit his medicines, so we sneaked them into his room and gave them when no staff was around.
Without some of his medicines, his symptoms were no longer under control. The staff had no knowledge of ALS, nor how to transfer someone. It took hours to get a team with a patient lift to come. We even brought our own patient lift, but we weren’t allowed to use it.
You must be a strong advocate
Here’s an example from our own experience showing how the caregiver has to be forceful when dealing with a doctor. Our son was taken to the ER with severe kidney stone pain and blockage. He needed general anesthesia prior to the operation. The anesthesiologist who met with my wife and me was a rather cocky, smug, self-assured prig when he came to talk to us prior to the operation.
By the time I finished “educating” this doctor about all the ALS-related issues, the doctor lost all his cockiness and said he had to talk to his peers about how to proceed. I saw his chest deflate when he realized this would be a difficult procedure. Then he ran out of the room. Not one of the surgery team even knew how to drive our son’s power chair. The most important issue was the fact that if our son were laid flat out on the operating table, his lower jaw would sag towards the table, then press against his trachea and choke him to death.
Our son was also very fragile. I ended up having to “suit up” and drive our son into the operating room, then parallel-park the chair next to the table. It took around eight people to lift him carefully and place him on the table while holding his head up until they could intubate him, lay him flat, and put him to sleep.
The ALS “establishment” out there doesn’t seem to be very proactive. And the ALS victims and caregivers seem to be helpless and clueless. With doctors, the usual scenario is: “You have ALS. Here’s a pamphlet, and there’s the door. I’ll send a bill.”
And the ALS victims and caregivers then ask, “Now what do I do?”
Regardless of whether you are the ALS sufferer or the caregiver, you have to be a strong advocate, because the medical establishment is reactive, not proactive, and many medical professionals don’t know how to work with ALS patients.
