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LeslieR

Member
Joined
Mar 23, 2017
Messages
16
Reason
Lost a loved one
Diagnosis
03/2017
Country
US
State
TX
It has been such a busy time and I hadn't had a chance to post earlier.

He was diagnosed 3/23/2017 and progressed rapidly. By May 2017 he was on AVAPS, July 25th he got a feeding tube and by December he had pneumonia and after being intubated for a couple of weeks went home on the Trilogy. He also had a Foley catheter that we were never able to successfully remove without having to replace it right away.

In Early March he was continuing to worsen and the pulmonolgist said it was either time for a tracheostomy or Hospice and he chose Hospice. After a few weeks it became clear that he was in the phases of dying and his desire for tube feedings diminished until he no longer tolerated any feedings at all. He had some discomfort and pain and required Morphine and Ativan every 2 hours - he also had 2 fentanyl patches on. I don't know how or why exactly he hung on for so long, in spite of telling everyone he was ready to go.

He lost his speech entirely the last month and would jot down a few shaky words on a boogie board. After he stopped tolerating any nutrition or water he lasted another 15 days. He had some alert moments until the last 48 hours. For those last two weeks he could shake his head "no" and blink his eyes for a "yes". It was heartbreaking to see him that way. On Monday, the 9th he was completely unresponsive and I asked that he be removed from the ventilator. The hospice Medical Director came out and agreed .

We all gathered around him and held his hands and spoke to him. We played soft music and lit an old oil lamp that had been lit on the night of his birth (at home) - His sister had given us the lamp and told us the story of her being introduced to her baby brother by the light of the lamp...

He took very shallow breaths spaced ever farther apart for an hour. Amazing Grace played...and then finished. The lamp ran out of oil and dimmed and my father did not take another breath.

From diagnosis til the end it was the hardest journey of my life to witness and be a part of and yet the final moments were peaceful and beautiful. <3
 
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lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,579
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Very sorry about your dad, Leslie, but happy to hear that he went out on his own terms surrounded by the light of the lamp and your family's love. Much peace and strength to you.

Best,
Laurie
 

KateEmerson

Distinguished member
Joined
Apr 23, 2016
Messages
467
Reason
Lost a loved one
Diagnosis
09/2013
Country
US
State
MA
I am so sorry for the loss of your Dad Leslie.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,433
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
I’m so sorry for your loss but touched by some of the beautiful details of his passing. Much peace to you and your family.
 

Lscott71

Active member
Joined
Aug 22, 2017
Messages
57
Reason
CALS
Diagnosis
05/2017
Country
US
State
Texas
I’m so very sorry for your loss, but glad you and family were there telling him you loved him and it was peaceful.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,620
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am so sorry for your loss. You gave him a great gift with that beautiful passing. He was lucky to have such a loving family to support him.

Wishing you strength and healing
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,547
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
So sorry for your loss!
 

Angiegal

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

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,493
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
Leslie I am so sorry for your Dad’s passing, however is sounds beautiful with the lamp and the music. So happy you could give him that in the end. Praying peace and comfort for you.

Hugs,

Sue
 

Jlynn

Distinguished member
Joined
Mar 16, 2016
Messages
386
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
NH
My sincerest condolences for your loss. Peace and comfort to you.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
552
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
So sorry for your loss. Sounds like he left this world at peace.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
720
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
Germany
Thank you for sharing your dad's journey and the peaceful farewell. I wish you and your family that you will find solace in remembering his life lived rather than his illness. With family stories like the one about the lamp going full circle you'll be able to keep him alive forever.
 

Miav123

Active member
Joined
Aug 26, 2016
Messages
47
Reason
Lost a loved one
Diagnosis
08/2016
Country
CA
State
Ontario
I am so sorry to hear of your dad's passing.
 
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