An ALS patient wrote these guidelines.

Guidelines for visiting me when I can’t speak for myself
At some point, I won’t be able to articulate my wishes. Here are some thoughts that might help those visiting or caring for me:

Keep visits short: About 20 to 30 minutes is enough. Being with people is tiring for me.

Consider visiting with a buddy: It’s hard to converse with someone who can’t respond and it can be pretty depressing. You two can talk to each other; I can listen.

Speak clearly and not too quickly: My brain has slowed down and it takes me longer to absorb and process information.

Respect my dignity: Please don’t speak about me when I appear to be sleeping — unless you want me to hear what you’re saying. I may be simply too tired to open my eyes. Even on one’s death bed, it is said that hearing is one of the last senses to go. Either talk to me as if I could respond or leave the room if you want to discuss my condition.

Don’t tell me to “be strong”: I’ve been strong all my life. When I’m at the end, I’m at the end.

Don’t try to be strong yourself: If you want to cry or get emotional, it’s all right. It’s an upsetting time. During Carl’s illness, I worked to be strong and not let him know how much his decline pained me, and now I worry that he may have thought that I didn’t care about him.

Be sure to clean my eyeglasses: It’s amazing how smudged they get.

Monitor my comfort: If I’m slumped down in my wheelchair, ask me if I want to be repositioned before you start moving me. Currently, I feel more comfortable in a slumped position than sitting upright.

Play my favorite music:

Jump to this post