First Special Day Without Her

[Jondrisko]

Hello everyone.  This is my first post.  I lost my wife, Terry, to ALS in May.  She had the disease for a very short time.  We knew it was a terminal illness but once it took her it was devastating.  I had support from friends for the immediate weeks following her death.  It seems to have dwindled down to just a couple of friends still checking on me.  It seems that people just don't know what to say.  Oh well.  I  have handled the life changes over the last few months well.  I have started to hike.  It seems that once I am on the trails there is a sense of peace all around.  I just got off the Appalachian Trail and while I was on it it was wonderful.  I had no fear or dread about dealing with my loss.  Then once I got home it all floods back in.  I am wondering if this is a normal thing or am I just running from reality?  I hope this makes sense. Jon   

[Julester3]

I believe this is normal. We all have whatever interest or activity that gives us peace and becomes our coping mechanism/therapeutic activity but it only seems to last for the time that activity lasts. Each time though it does still help and the pain of grief that comes and goes on between seems to soften some, at least in my case.

That hike sounds wonderful. Hugs for you today.

[JeanGenie]

Jondrisko,
I'm glad you found this board and posted. As you read what others have posted, you will find what you are experiencing, others have as well. Yes, supposed friends go back to their normal lives and what we've all unfortunately learned is that until you experience this, you just don't get it. Your relationships will continue to change and evolve...it's simply part of this crappy process.

The same is true about what you experienced with your hike and then returning home. But keep doing what you're doing. Going for the hike clearly gave you a reprieve. It's all just part of the process.

I hope you continue to post and find support from us here.  Hugs to you...

[Wheelerswife]

Hi, Jon.

I’m sorry for your loss, but I am glad you found us. ALS is a tough disease to have to cope with as the patient and the caregiver. If your wife didn’t have it that long, then you probably didn’t have as much time to prepare yourself for what was coming.

My first husband had a genetic disease that affects the same nerve cells as ALS. We had a lifetime to prepare for his death, but my realization after he died was that being prepared for him to die is very different from being prepared for him to be dead. The sadness was overwhelming and my life became very empty.

Sometimes, I think we just have to do whatever is necessary to get through time. Sometimes, that will be hiking or traveling or retail therapy or burying ourselves in work. But no matter what, the loss is still there and grief will come back to your consciousness pretty regularly. For now, just do what feels right and time will soften the pain somewhat.

I have found it most helpful to find others who have walked a similar path. We get each other.

Hugs,

Maureen