How can I help?

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galynn

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Joined
Jul 18, 2008
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5
Reason
CALS
Country
US
State
MN
City
St. Paul
I am a psychologist working with a family affected by ALS. The patient with ALS is in the final days. Extended family members are struggling. If you would be willing to share, I would be so greatful to learn what you have found to be most helpful as you cope with the loss and grief that ALS brings. Thank you so very much!
 
galynn-

My mom passed away from ALS one month ago yesterday. I had been caring for her full time during her last couple of months. I know (and you know) that everyone is different. But my mom requested that I be with her nearly every moment, something that was unusual for her normally independant, stubborn spirit. I was sleeping next to her when she passed away, but it was still such an overwhelming shock that I'm just beginning to process. A couple of things that have helped me a bit in these past weeks: I'm having a quilt made with some of her favorite clothes. (I was feeling both sadness and guilt about donating or selling these things, and a quilt seemed like a perfect way to keep her close to me. But what's been great just these past few days is that I've started a special journal just for those things that I would have told my mom if she'd still been here. Silly things, like the fact that Sephora now sells dry shampoo, something we looked for FOREVER, or that Izzy's now sells coffee icecream (which we'd waited for), or my quick thoughts on having kids after spending a week with my godson. Nothing profound, but because she was the first person I wanted to tell so many things to, it helps to have a place to put those thoughts. My good friend Kristin, whose mom passed away in May from brain cancer has started the journal as well. We figure we got jipped, losing our moms so early. And there's still much to say.

These things aren't helpful NOW for the family, but I pray for peace and grace in the final days for them.

Kaija
 
Kaija, Thank you so very much! What creative, thoughtful ideas -- both the quilt and the journal. This time is difficult, as you know, for every family member (spouse, kids, extended family members), and many times I am at such a loss myself. I'm guessing that sometimes my own feelings of helplessness mirrors what they are experiencing. Thank you.
 
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