Advice on death.

In the line at the visitation, I shook hands with a man who will also lose a parent to ALS. I told him, "make sure to visit." Early in Mom's illness, I committed to visit two weekends per month (it's about a three hour drive). I didn't always make it, but it gave me something to shoot for, and it got me out the door.

I sometimes felt my trips were wasted, that I didn't talk to Mom enough, but I'm now very glad I went. When my grandmother died, I realized I hadn't visited enough. I felt like a heel. Every time I went to see her, she was obviously very excited to see me, and Grandpa told me that she'd always talk about it a lot after I was gone. Still, I didn't visit much, and after she was gone, I regretted it. When I learned that Mom was sick, I was determined not to let that happen again. I'm glad that I learned that one last lesson from my grandma.

Mom died at home, surrounded by family, and this was exactly right. When she had trouble early in the week, we could have called 911 and taken her to the hospital. They'd have done about the same things for her, but it would cost a lot more and be less comfortable for all involved. We had daily (or more) visits from the hospice nurse, and that was good too.

Before Mom died, my wife told me to say goodbye, to give Mom permission to go. I can't know how hard it is to face death, but Mom was, and she needed to accept it. I told Mom that I hadn't wanted to say goodbye, that it sounded as if I was leaving, abandoning her, but I realized that's not true. Mom was leaving us. I said goodbye to her, and I said that I was sorry to see her go, that she was important to me, but that I understood it was time for her to move on. We cried.

Saying goodbye lifted a lot of tension off of me. Relinquishing hope is hard to do, but I recommend it highly.

I've been told recently that it will take a year to grieve. I have to go through all the holidays, birthdays, and other special times. I have to experience them without Mom, and miss her then. Having done that, I can really get a handle on what I've lost. I suspect I have a head start on this because Mom was sick for over a year, and I've had that time to consider the loss, if not experience it fully.

Eventually, that's what I have to do, experience the loss fully. I've heard that I need to know what I'm losing, and I believe that's true. It's easy to say, "I've lost my mom," but there's a lot more to it than that.