I just want to give you an update on my sweet husband.
His leptomeningeal carcinomatosis is not acting like the cases I have read about here on GRACE. Vicente spends most of the time in his hospital bed (at home) watching TV that he has a hard time following. He will get up using a walker or a wheelchair. More often than not, be doesn't make any sense when he speaks. He gets headaches that are controlled by morphine and valium (ativan made him completely nuts) about every three hours. The tumors in his lower spine cause him much pain. He is unable to have a BM without an enema.
He will have sudden seizures in which he looses all "power" in his arms and legs. His eyes will stare or roll up, but he is conscious and responds. At first, this was very scary for him, but he seems used to it now. He scares me as he will just get up and walk around. I wouldn't be able to pick him up if he crashed. He had a seizure this morning while he was sitting up in bed. He dropped the water he had been drinking and slammed his head back on the bed rail.
He is eating like crazy but not gaining any weight (on decadron). He wakes me up every two hours or so at night asking me for coffee thinking that it's morning. I am exhausted.
I have read in other posts about hospice being with the patient 24/4. That's not the case here. They drop off supplies, offer to bathe him (he refuses), but that's about it. My mom, who lives with us tries to help when she can - usually by sitting with him while I run an errand or shower.
It's a constant fight getting Vicente to relax. Yesterday, he wanted to go outside to rake leaves, but he can hardly walk! Once I found him wandering out back in sub-freezing weather at four in the morning. I am so afraid I will find him lying somewhere with his head cracked open.
I guess I don't really have a question; just wanted to describe a different path that lepto can take.