On 7/22/2008
cozymel wrote:
I would be cautious about using up all remaining time off. I spent January on vacation, then signed up for FMLA and used up 11 out of 12 weeks of FMLA, because they told me he likely would not make it through January. But he is still about the same as in January. Now I am vack working and sort of in a bind if things deteriorate, not much time off left. Be sure to save some time, then go back to work if possible. I was lucky because they let me go back half time, and because we have a great sitter 8 hours a day so I can work. But I have just about a week vacation left and a week FMLA.
They don't know how long, no matter what they say. It boggles my mind that his MRI looked so bad in January but he is still about the same in July. But it's a good problem to have because I just can't let go of him, and since he isn't in much pain, for now it's OK. I wanted to slap a hospice nurse the other day who said "have you told him it's OK to go?" I guess I might be selfish, they seem to want him to let go, but we still have some good times; or am I kidding myself?
One caveat--he has a slower growing anaplastic astrocytome (grade 3) which might be why the doc's prognosis estimates are wrong--more patients have a grade IV which progresses faster usually.
Cozymel,
Like you I've heard many people say we should be sure to let our loved one know it's okay to go. My husband knows that I won't give up fighting for him and I think he gets strength from that because I can see the lines in his face ease when we talk about the future and other possible treatments. But he also knows that when it's time for him to go I intend to be by his side easing his mind. I know that he worries if I'll be okay without him and to be honest I know it'll be hell - he's all I know - and I don't look forward to being alone and without him. But I will be here and I will be without him and when he's gone I won't be able to see or touch him anymore and he won't be coming back.
I say enjoy your time together...keep each other strong...keep communication open...and he'll know when he's ready to go.