Thursday, January 12, 2017


This feeling, this lonely sad feeling is hard to describe.  It's consuming.  I think it's ok.  I've tried to push it aside, thought about re-engaging with the world.  But I can't.  I want to spend every moment with Ed.  I feel a shift in his demeanor.  Something is lurking around the corner.  I know it.  We've been through this enough in the last 3 years that I see the signs.

But what?  What's left for Ed to lose?  He's totally immobile.  He can't move his head anymore.  He can't eat anymore.  The next thing for him to lose is his voice.  The thing that's kept us connected for the last 3 years.  I get to hear that he loves me.  He can tell me what hurts, what he needs.  I've become obsessed this past week with what happens when he loses his voice.

We met with our speech therapist today to see what kind of technology is available.  We know there are programs out there which will allow Ed to "talk."  My worry is his energy level.  It's gotten harder for him to sit up in his wheelchair.  It's hard to use the computer in bed because his head doesn't move.  It takes a lot of brain power to concentrate on the program and sometimes, Ed just doesn't have it.

So what happens when he can no longer communicate?  I don't have the answer.  We're still working on the computer... we'll see how that goes.

I wonder if I'm being too negative?  Looking for signs that aren't there?  Whatever is going to happen just will happen.  I can't prevent it.  Even when I gear myself up for something, I'm still surprised when it happens.  Heartbroken.  How must Ed feel??

We're at a point where I can't really talk to him about it.  We used to.  Now he seems far away.  If you sat with him, he'd be fine.  Quiet, maybe.  Or he might fall asleep as you talk with him.  Lots of drugs, I think.   No energy.  Plus I don't want to talk to Ed about sad things.  I want him to feel love and happy and comfort.  I spend lots of time touching him, massaging his swollen, heavy arms and legs.  We don't talk much.  We did a crossword puzzle about a week ago and it made him anxious.

This is hard.  It's going to get harder.

I think it's ok to be this sad.  To mourn the loss of our relationship, the loss of having him here at home.  It's amazingly scary how easy the tears just flow.  Sometimes it feels good to let it out.  Other times, the sadness is too much.  I hope if I get it out now, when he dies, I won't have any tears left.


This is the question I just asked my online ALS group:

I've been thinking about this a lot the last couple of weeks. Our ALS doc discussed end of life with us way back when end of life seemed far off. Back in the day when we were worried about other stuff like losing his job or his legs. Our doctor said my husband has control over when he wants to die. He'd stop tube feedings. It's up to him/us - along with input from the doctor - when this happens. I keep hoping he'll just pass peacefully. And maybe he will. We have an advanced directive but it never included this locked in scenario. We're getting closer to it. He's completely immobile, recently lost use of his head. He's tube fed but he can talk. His voice is going. We're in the process of getting an eye gaze system. That being said, he's so tired. He's rarely in his wheelchair anymore. I worry about his lack of energy in order to use a communication program. I guess my question is - have you thought through this scenario? Once bedbound and locked in, what next? We've discussed some of it -- but not really pinning it down. Can it be pinned down!?? If he's unable to communicate, how will I know? Ugh. Tears. I hate this.

These are the thoughts that keep me up.


  1. Lynn, my heart is breaking for you and Ed. Those final days are incrediby hard, especially when your loved one loses the ability to communicate with you. It's sad, scary, and heartbreaking when you can see they want to say something, but can't. You are doing what you can by surrounding Ed with your love and your touch. I hope that there are some better moments today...hold on to those smiles and those eyes filled with love as they look at you. Sending hugs.

  2. Lynn, thank you for letting everyone see all of this, your feelings, what this all is like. You know my heart is with you both in a special way. There are no words. As someone said on my group said "ALS is unlike any other terminal illness". So true. Indeed, as Shaun says so beautifully I hope you can hold on to those eyes filled with love, looking at you.

  3. Lynn, I was talking to my Hematologist Wednesday, she said ALS is the worst disease she has ever heard of, or been a member of a team treating an ALS patient (one who had overcome cancer, only to be diagnosed with ALS 3 years later). She agrees that you are a doing all you can, continue to remember that Eddie loves you with all his heart, even when he can't voice it, it is there. Choosing time for end of life.................I can't say, I don't want him to suffer. I don't want him to die, but, it is going to happen, and if he decides it's time, I am there as well. My heart and thoughts are with the two of you every single day.