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rafc

New member
Joined
Nov 11, 2008
Messages
5
Reason
CALS
Diagnosis
10/2008
Country
US
State
New York
City
Brooklyn
On Nov. 17, I was on my way to the ALS Assn support group meeting, which was to be dedicated to caregivers. While on the express bus to Manhattan from Brooklyn, my mother's aide called me on my cell to say that there was a problem. My mother (diagnosed'ed with bulbar onset ALS in Sept., '08) wasn't responding. I immediately got off the bus (which happened to be in front of Ground Zero in lower Manhattan), and tried to get a taxi back home. Of course, no available taxi, so I waited for the next bus going back home.

I called a neighbor (who is also a dear friend of ours) to run in and see what was happening. Phone calls back and forth between myself, the aides, the neighbor. The hospice nurse was called and arrived very quickly. She pronounced Mom as deceased about an hour after I had left the house. When I left the house for the meeting, mom was sitting on the living room couch. She seemed to be ok, although she was depressed (that happened a lot, especially towards the end, inspite of the anti-depressant and anti-anxiety meds she was taking). After I left, evidently, her lungs just gave out, as the hospice nurse had warned would happen. She died without me, but holding the hand of our neighbor, our angel, who had been there for both of us.

During the last 3 months, the ALS had progressed very quickly and viciously. I was away from home only to go to work. And I wasn't there when she passed away. Everybody keeps telling me that she waited for me to be gone, that she didn't want me there to witness her passing.

Mom was 88 years old at the time of her death. She did not fit the typical profile of someone likely to get ALS, but she got it. And it ravaged her. She lived a long, happy, and healthy life. It seems so unfair that it had to end this way, that she had to suffer the way she did with this insideous disease.

Although I wasn't at home when she died, her body was still there when I got back from the city. She was on the couch, with a blanket covering all but her face. All the wrinkles were gone, the stress was gone from her face as well. She had a look of peace and tranquility on her face that I will never forget. It was as if she were saying, "It's OK, I'm at rest now". I asked the nurse to tell the funeral director to wait a little while to come and get her body. Mom was at home, where she wanted to be, and I wanted her there. There were no hysterics, there was sadness, of course, but there was relief that her ordeal had ended peacefully, quickly, and without pain. And I have the memory of her, and that look of serenity on her face.
 
What a wonderful description you described. My condolences on your loss!
 
so sorry of her passing , and a beautiful way of putting it...my mom died at home and i was sitting by her ( 8 yrs after 2 major strokes ) it was like a shock even thou i knew it was a matter of hours as my sister was a hospice nurse .. the worse part for me was when they came to take her i knew i would never see her again . but , she did die with all of us with her and all of our kids came down it shows me what a wonderful mom she was to instill our closeness not only to us but, our children as well she lived in n.c. we live in ma, and others in Fla. i am saying this as you got me to look at that night in a different way...thank you ...and god bless
 
Thank you for sharing your story. Your Momma must have been such a wonderful woman to have that outpouring of love and devotion from her child and friends. So glad that all of you are at peace. hugs, Kay Marie
 
Very sorry for your loss. What a wonderful daughter you were to her.
 
Thank you for sharing those moments with us and for all of the loving care you gave your mother during her illness. Please accept my condolences.

Kim
 
I'm so sorry to hear of your loss. I'm sure too that she waited until you were gone. Please take care of yourself.
 
So sorry for the loss of your mom.

AL.
 
So sorry for the loss of your mom,My father inlaw passed away on mother day with lung cancer & he also waited until everyone was gone except my mother inlaw & me.
Sharon
 
So sorry to hear of the loss of your mom. Mothers are so special and are greatly missed.

Love,
Holly
 
So sorry to hear of your loss but relieved for you and her that the battle is over. I absolutely believe that she waited for you to leave. My grandmother waited until my mom and grandfather fell asleep to go. Some people want it that way. She was being maternal and protective of you until her last moment. You are a wonderful caring daughter and I hope you are comforted by your precious memories of a loving mom.

Please accept my deepest sympathies.
Hugs,
Rosella
 
Thanks you so much for sharing with us your last day with your Mom. What a wonderful child you are and were to her. I can imagine how much she loved you ...Our children our family and friends ,is the most important treasures in this life. I hope you feel the comfort in knowing that she didn't want you to see the very end but to remember each day she lived and all the wonderful memories..... Big Hugs to you, Linda
 
My wife deteriorated in much the same way these last three months and the end, when it came, lasted only about 48 hours. I'm convinced she was waiting for her mother to arrive and only then did she feel she had permission to go. God bless you and godspeed to your mother. I wish you well in your journey to continue on from here. I'm still trying to figure it all out myself.
 
I am so sorry for your loss. My heart goes out to you.
Dana
 
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