Katie's having one of those days. You know.. the kind where you get up ready to face the day and get things done and then.. well.. reality gets in the way?

Got off to a pretty good start.. except on the way down I remembered I'd left a bag with hospice meds on the kitchen table. Ack! Called home and nobody was awake so just kept my fingers crossed. Got home and all was well with the meds.. but there was a broken vase on the floor and the shredded remains of a milk carton in the family room.

Then I get a call from the physical therapist at Kaiser that I didn't even know we'd been referred to. Physical therapy at this point merely gets Glen tired and grumpy.. he's not going to regain use of his limbs. But anyway... she starts asking me questions: "So do you have a power chair?" No Glen doesn't use a wheel chair at this time. "Do you have a regular wheel chair?" Yes we do, but he doesn't use a wheel chair at this time. "Even when he's out somewhere?!" He is unwilling to use the wheelchair even if it might help him. "Well, does he use a walker?" He has minimal use of his upper body and would be unable to use a walker. "Is he ambulatory?" Yes. "Well how ambulatory IS he... can he walk more than a hundred feet?" He can still walk almost a mile.
"Oh. Well then if you don't mind my asking, WHY is he in hospice!?" Um.. let's see.. he chokes on his food much of the time and his lungs are filling with fluid. "Oh. Is that because of the mild dementia?" Glen has bulbar onset ALS with frontal lobe dementia. That means his upper body is involved, far more than his legs. It also means his dementia is significant even if he can tell you his name and address and the name of the vice president. [brief pause] "So has he had any falls?" Yes "How many in the past 2 months?" 4 "Oh, so he is a fall risk." [resisted urge to say gosh.. I bet your dad is glad he paid for your tuition!] Yes.. he has no arm strength so if he starts to fall he can't catch himself. "Well then somebody has to be holding on to him at all times when he's walking."

About this time, I just pretty much shut down.. mm-hmmmed her until she got off the phone. Glen is NOT going to allow someone to hold on to him at all times, which is why we watch him like a hawk. I am NOT going to use restraints on him. The whole point of hospice is to allow him to go through this process with as much dignity and independence as possible. I think the PT skipped compassion class.

Then Baron threw up on the rug. Yup. That kind of day. Now I need to go to the gas station, then go pick up Glen.