When tragedy strikes, there are lots of instructions for the patient. Things such as physical, occupational, and speech therapy instructions. Discharge instructions on different medications, why you are taking them, and how often. Follow-up instructions so you can make sure you go to all your different appointments on the right days and times. Then there are just the generalized, day-to-day instructions, such as avoid green, leafy vegetables while you are taking your Coumadin.
But what about the family? What instructions do THEY get? How do they treat this patient, who basically walked in some sort of time machine one day and came out an entirely different person. Do we treat her different now or do we treat her the same? How should we feel? Is it okay to feel frustrated and annoyed sometimes, or should we feel ashamed of those feelings because we clearly are not appreciating what we've got. What the heck do we do and how the heck are we supposed to feel right now?
I know, speaking for myself, I feel a TON of grief. Solid, hard, knocks me to my knees grief. Grief that makes me want to push everyone away, including those that love me the most, just because it's too much work to share it with others. I have a TON of anger. Fierce, hateful anger. Every day, I wake up and I'm either so depressed and empty, it literally takes everything in me to get out (and stay out!) of bed every morning. I literally feel like I could sleep all day long. If I'm not feeling mopey, then I am crazy angry. Everyone bothers me and every situation is so annoying.
Is this NORMAL? What can I do for Leslie to help her? No one ever told us that part so we are all winging it, and we're all winging it in our own way. No one knows what the best way for her is.
My mom said something recently that really stuck with me. She said "What if, a year from now, we realize that there was one more thing... one more doctor or therapy...that we could have done for Leslie and we didn't. And now it's too late."
Ugh! That's so true! But no one has ever told us what our other options are. Again. We're winging it. We're winging my sisters life. Her future. We hope we are doing everything right, but in the meantime, we are all still trying to recover from this all. It all happened so suddenly and without warning, there was never a chance to regroup and start fresh. I know I don't speak for myself when I say I'm just TIRED. I'm tired of feeling and of thinking and worrying. I want my normal life back.
Please pardon me shifting the focus of my blog from Leslie to me. It's just a really big struggle right now.
Are we doing the right things for her? Have we done everything we can?