Dan went in to see his ALS specialist last week just about he time I got super, super sick. So I got to be in on the appointment thru the phone. Doctor told us we are at the end of the end. It will take anywhere for 1 week to 1 year. Well, that gives me a lot of lea way. I asked him if there was some thing I should watch for to call the doctor, nurse, 911 or anything? He said yes and gave me a list to which my answer to each was he already does that. By the time he got to the end of the list I said
"oh" and he said call him if I had any questions or concerns. When I asked him when we should make a follow-up appointment, he totally hesitated. Then had Jeff make one for 10 May. It is assumed he won't make it until then and if he does to make it a call in appointment. He thinks Dan will either be gone or not able to come in for an appointment because he is to weak.
Due to me being sick we have had our first experience with hospice respite care. He hated it! I have often been told I spoil him. But you know what after the last 4 days of respite care I realized every person who is loved deserves that not the cold place that he was just in. We should all spoil those we love. I couldn't believe that he came home sicker after being in "professional" care than he does when he is here with Jeff and I doing "the best" we can. He now has many bed sores (only gone 4 days!) He hadn't had a bath the whole time. The list of things that went wrong is so long!! If you have to put a family member in a "old folks home" keep watch on them. Go every day and stay on top of visits. I believe when they know someone is coming they take better care of your person. I just want you to know we had people up there a LOT and yet still he didn't get the care he should have received. He is home now, clean and napping in his chair where he belongs. Yes I know his time is short but I have decided that I would rather he be here and me make a mistake that makes him sicker than have him stay one more moment in a place like that!!! I think my mistake would be made in love and he would be surrounded by people who love him more than life. But I have gotten pretty good at this and don't make mistakes much any more. I do the best I can and let love do the rest!