None of us were strong enough to lift him alone
Submitted by: D, Southfield
D’s father-in-law Gary in the makeshift bedroom her family set up for him in their living room. He is writing to communicate because he can no longer talk.
I helped to care for my father-in-law when he had ALS. It all started with a cold---or what he thought was just a cold. Soon he couldn't talk at all. When he fell down at his home up north and couldn't get up, my wife brought him to our home. Our dining room was set up with a bed for him. We bought a TV for the first time in our lives so he could watch baseball, though it wasn't long before he no longer could.
We were told that a person can live for years with ALS, but his progressed so fast that he died in less than a year. Looking back, my wife wishes she had taken family leave to take care of him, but leave is limited and she thought we would have more time.
It was heartbreaking to see this previously strong, independent man who loved hiking in the woods losing his ability to do anything independently. I did everything I could to take good care of him. I would help him up, make him lunch, help him off the toilet (which I knew was humiliating for him). But I was working full time as was my wife. My mom would come over during the day. But eventually he could not participate in sitting up and none of us were strong enough to lift him alone.
We eventually got a part time home health aide through the VA. The VA was really great to work with. They "fast tracked" everything, but as soon as we'd get approved for something his disease had progressed to the point where he could no longer use it (such as an electric wheelchair and ramp). The home health aide was wonderful, but it was not enough. She was only there during the day, at night we were on our own. It was so hard for everyone, especially him. He could not speak and once he was no longer able to write things on a notepad for us, he had no way to ask for what he needed. And we were not always good at guessing. He died his first night in respite care. We miss him a lot.