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The strife is o'er, the battle is won

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Hewitt

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Joined
Dec 8, 2015
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53
Reason
Loved one DX
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US
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NC
My beautiful sister died very unexpectedly of complications of ALS in the middle of the night last night. She had just been in the hospital for replacement of her feeding tube, and the Hospice nurse had examined her a few days ago, and no red flags were raised except for the fact that her blood pressure was unusually elevated. When I arrived for a visit on October 20th I was startled to see that she was doing the sort of guppy breathing that preceded my mother's death, but her neck was hyperextended due to rigidity, and neither the ER doctors nor her nurse seemed to be concerned about it, so I decided her breathing issues were a result of altered posture. Her life had become pretty tough in the last month, so I feel enormous relief at knowing she is at peace at long last, but it is still a shock. I am still surprised that neither the hospital nor the Hospice staff seem all that familiar with issues that face ALS patients, even when that hospital has a wonderful ALS department. I guess this is because it is still a pretty rare disease, but this lack of knowledge really adds an additional burden to ALS patients and their families.

For all of you caring for an ALS patient, be sure to give them a big hug and tell them that you love them every day. The bravery, stoicism and grace required of ALS patients as they navigate this journey leaves me feeling truly humbled, and it will inform the way I spend the rest of my life. I'm so grateful that I got a chance to spend a week with my sister and tell her how much I loved her. Fly free at last, Alison Doane--
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,222
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am very sorry for your loss. Glad though that she is free of suffering

Peace and comfort to you and the rest of the family
 
Last edited:

pittsburghgal

Distinguished member
Joined
Jan 7, 2016
Messages
480
Reason
CALS
Diagnosis
11/2011
Country
US
State
Pa
I am so sorry for your loss of your sister. I am glad you were able to spend time with her and tell her how much you loved her. You and your family are in my thoughts and prayers.

Sharon
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,194
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
So sorry for your loss. Peace and love.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,245
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Hewitt, very sorry to hear of your loss, but happy that Alison is at peace and your time with her was a huge factor in that. Your point about the lack of awareness/knowledge of ALS within the health care system is well-taken; we can only each do our part to improve what we can. Peace to you on your journey from here.

Best,
Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,516
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
I'm so very sorry for your loss xxx
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,514
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
So sorry for for your loss Hewitt! So nice that you were able to spend some time with her and give her your love. May peace be with you and her family.
 

Jrzygrl

Distinguished member
Joined
Feb 14, 2017
Messages
490
Reason
CALS
Diagnosis
08/2014
Country
US
State
NJ
So sorry for your loss. Wishing you peace.
 

scaredwifetx

Forum Supporter
Very helpful member
Joined
Jul 25, 2015
Messages
1,571
Reason
CALS
Diagnosis
07/2015
Country
US
State
tx
Sorry for your loss. hugs
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
Sorry for your loss.

Angie
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
Sending you good thoughts!
 

adrivtham

Distinguished member
Joined
Feb 23, 2016
Messages
116
Reason
Lost a loved one
Diagnosis
02/2016
Country
US
State
texas
So sorry for your loss. Hugs in this hard time,
Adriana
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,311
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
So very sorry for your loss Hewitt. I'm thankful you had that time with her before she past. Yes, she is free. Remember the good times. Hugs and prayers to you and your family.

Hugs,

sue
 

Hewitt

Active member
Joined
Dec 8, 2015
Messages
53
Reason
Loved one DX
Country
US
State
NC
Sorry I mistyped the first line of that lovely old hymn - my laptop has tiny fonts that are difficult for my aging eyes to read. It goes "the strife is o'er, the battle is won", and its message of triumph over physical adversity and death has cheered me up many times during this long struggle.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,222
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Fixed it for you!
 
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