Some thoughts from a CALS...
When you visit our home, please understand that things are organized for my PALS' convenience. The furniture is placed to accomodate his chair, dishes and his favorite treats are placed where he can reach them, and that big Tervis Tumbler that is always sitting on the counter by the fridge is for him (in the event that I'm not readily available to pour a drink for him). We use a smaller pitcher than we used to for his tea because he can't pick up the larger one when it's full. Please don't block his access or relocate things without checking with me first.
It takes a minimum of two hours to get my PALS fed, medicated, showered and dressed in the morning, and then I need time to clean up after him and get myself ready. Please understand that early appointments are very difficult for us, and if you are visiting we won't be up and going very early. If we've welcomed you into our home, please make yourself at home and plan to entertain yourself for much of your visit while we take care of things you probably don't want to hear about.
My PALS cannot stand and I cannot lift him, so we try to schedule our outings around his bowel movements. If we misjudge, he's stuck wearing a dirty diaper, and that is no way to socialize. We try to be on time when we've made plans with you, but sometimes we're going to be late no matter how hard we try.
We often cannot predict when my PALS will need to sleep all day. If you've planned a visit, we appreciate it, but please don't be offended if your visit is with me. Unfortunately, I won't be free to leave with you because he does not sleep unattended. I monitor him so that can respond if he gets tangled in the sheets or his arm falls off the bed while he sleeps (the weight of his arm hanging down while he sleeps can cause pain for several days). I also adjust the bipap mask, refill his drink, empty his urinals and respond to a variety of other issues while he sleeps. On top of that, I'd no sooner leave him alone, stuck in bed and unable to rise, than I would leave an infant home alone in a crib.
Please don't ask me what I'm up to besides ALS these days. If I had time for anything else, I'd be talking about it.