The decline in strength of an ALS patient is continuous, but not consistent. There are good days and bad days, good times of the day and bad times of the day. In certain cases, this can cause some interesting conflicts between patient and caregiver.
Sharon is at that point in her decline where she can sometimes lift herself up from a seated position, and sometimes not. In all cases she needs help — she can’t lift herself up without someone supporting her under her arms. But in many cases that support isn’t enough: her knees won’t lock, and so her legs give way when she tries to stand. She also has continued trouble with her left ankle: it rolls over on her, turning sideways and shifting her weight onto the side of her left foot instead of the sole.
Often it takes more than a few attempts to get Sharon upright from a seated position. The trick is to help her up without letting her fall during the failed attempts. It’s frustrating for me. I know that she wants to be strong and use her abilities as long as she has them, but at the same time it seems futile for her to try over and over to do something that she is failing at.
I guess in some sense she’s not just fighting to stand up — she’s fighting against the disease. If she gives up and lets me use the patient lift then she’s essentially letting the disease win. It’s a matter of honor with her. Every concession is a retreat on the battlefield. Every failure is an acknowledgement that the disease is slowly killing her.
I sometimes criticize Sharon’s behavior, telling her, “Attempting the same thing over and over and expecting a different result is insanity.” But I’m ashamed of my words. I understand her commitment to fight off the disease, and as frustrating as her actions are in the short term, I absolutely believe that she’s right to be fighting.
And so on the good days and in the good times I try to help her stand up. And on the bad days and in the bad times I use the patient lift. I just wish the bad times wouldn’t so often correspond to the bad times in my own day. It’s tough to agree with Sharon’s keep-trying-over-and-over approach when it’s the end of the day and I’m so tired I can hardly stand up myself. But as frustrating as it is, it’s what I need to do. Sharon is right: she has to stand up as long as she can.
