Given Sharon’s current condition, transfers are my biggest problem; it’s difficult to move Sharon from one place to another. There are certain situations that are everyday occurrences for most people but a nightmare for people with ALS.
Just a few minutes ago I was helping Sharon move into the shower. She was sitting on the toilet, which is right next to a walk-in shower, and she wanted to move to a shower seat that was in the shower stall. This is how Sharon is currently taking a shower: she sits on the shower seat and uses a handheld shower head to rinse herself down, then she uses body wash to clean herself, then she uses the shower head again to rinse.
That sounds reasonable, but the difficulty is getting Sharon into and out of the shower. There’s about a three-inch step to cross in order to get in the shower so I have to help Sharon up from the toilet, help her move close to the step, help her lift her right foot over the step into the shower, help her reposition herself to shift her weight from left foot to right foot, help her lift her left foot over the step, help her turn 180 degrees so that she’s facing out of the shower and can sit on the shower stool, then help her sit down.
I’ve focused my description on her feet, but meanwhile Sharon is using her hands to grab onto anything that might help support her: the edge of the shower door, the faucet handle, the towel bar, the handles on the shower stool, and of course, she’s grabbing onto me.
And then something went wrong
OK, this sounds complicated, but certainly doable. But what’s really bad is when something goes wrong, which is what just happened. And here’s the worst part: I have no idea what went wrong. I just know that part way through the process, when Sharon had both feet inside the shower and was trying to do the 180 degree turn, Sharon started bawling. Crying is something that I don’t see from Sharon very often — she’s just not that kind of person. But when something goes wrong with someone who has ALS — even when they’re taking medication to minimize this ALS side-effect — the crying can be intense. Major tears. Loud wailing.
So here I am in the middle of helping her go into the shower, and she starts bawling. I don’t know why. I don’t know if somehow she hurt herself, or what. And of course ALS prevents her from saying anything, so she’s not able to communicate what’s wrong. I try questions, “Are you hurt?” “Is there something I can do?” No response other than more crying.
And to complicate things, Sharon is in an unstable position. She can’t stand up for very long, and she’s standing up in the shower, just crying like crazy. I try to get her to complete her 180 degree turn, but she just keeps crying. I can see her getting more and more unstable and afraid, like she knows she’s going to collapse at any moment.
Finally, I do my best to physically hold her up and ease her down onto the shower stool, twisting her as I do because she hadn’t finished her 180 degree turn. Her crying gets worse. She’s unresponsive to my questions. I don’t know what to do.
What I Did Next
People unfamiliar with ALS will consider what I did next to be cruel, but experienced ALS caregivers will understand. I made sure she was seated safely on the shower seat, I shut the shower door, and I walked away from the bathroom.
Taking this action goes against everything I’ve ever learned as a parent. You don’t walk away from a crying child — at least not in most cases. You comfort the child, you try to find out what’s wrong. You provide physical comfort in the form of hugs.
It doesn’t work the same way for an ALS patient in the height of a meltdown. Believe me, I’ve tried it in the past. It seems like the only way to make a situation like this better for Sharon is to leave her alone to get over it. ALS causes extreme emotional reactions — reactions over which the ALS patient has no control. They can be negative reactions: crying and wailing. Or they can be positive reactions: uncontrolled laughing. Either way there’s nothing more that the ALS patient wants than for the reaction to stop, but typically the patient can’t stop as long as there is external stimulus. So I took away the external stimulus.
Sure enough, five minutes later Sharon had finished her shower and was over her crying fit. I helped her out of the shower, and she appeared normal. She pointed at her left foot as if there was some problem with it, but I won’t know until later — when Sharon gets to a keyboard — whether she hurt her foot getting into the shower, or whether this is just the continuation of the ongoing problem with her foot (the left foot was the first to lose motor control).
Eight Transfers Every Morning
This is just one example of a transfer from hell. But each morning I help Sharon through at least eight different transfers:
- Bed to wheelchair
- Wheelchair to toilet
- Toilet to wheelchair
- Wheelchair to bed (Sharon goes back to bed to read after she gets her morning medicine through her PEG tube)
- Bed to wheelchair
- Wheelchair to toilet again
- Toilet to shower
- Shower to standing for a brief period when Sharon leans on the counter to brush her teeth, wash her face, etc.
Transfers are hell. You develop a standard approach for doing each one, but patient capabilities continue to decline so each approach is constantly being revised to deal with new issues. I can’t see this ever getting any easier.
…
Afterward
When Sharon finally got to a keyboard, she told me that we had somehow inadvertently gotten her into a position in the shower where her knees were too close together for her to move her feet. She didn’t know how to solve the problem, and she didn’t know how to communicate the situation to me. This caused the meltdown.
I now know to carefully watch out for foot placement when I help her move from one position to another. I also now know how to recognize the problem in case it occurs again.
