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Cristin's Ulf

Cristin P

Member
Joined
Aug 22, 2018
Messages
16
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
I can't believe I'm typing these words. My husband Ulf suddenly died today nearly 7 hours ago. I don't understand what happened.. he finally agreed to use the bipap last night for the first time for a few hours. I had checked his osat level and it was 88 when laying down. When I put the bipap on him, it went up to 92, but his heart was at 120bpm last night and this morning. He had another terrible night of sleep last night. He only used the bipap for 2 hours at the start of the night and then another 2 hours in the morning. Today he seemed ok, and when upright in his wheelchair his osat was 95 without the bipap.

Towards the end of the day he was at his computer and suddenly said, "I'm having a panic attack" or "im freaking out" (I can't remember which). He seemed to gasp for air so I pushed him to the bedroom and put on the bipap. He said it wasn't helping and said to get him on the bed. We just got the hoyer lift and he was in the lift moving toward the bed when he said he was passing out. I saw his head fall back and eyes roll back. His lips turned pale and I called 911 right away, and started CPR. They came and kept doing CPR and other stuff. They took him to the hospital and when I got there the doctor told me they weren't able to get his heart started at all. And that he passed away.

I'm so confused, shocked, scared, in disbelief how this happened or why he suddenly died like this. We hadn't had his breathing checked in months because of covid so I don't know if I should have expected this but how could be just suddenly die of heart stopping or something?

He was so miserable the last week or so, crying that he hated his life and he felt so degraded with his disability. And I'm afraid once the lift arrived, did it push him over some edge of not being able to handle the disability?
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,477
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I am so so sorry Cristin. I am constantly heard to say here - the only predictable thing about this disease is how unpredictable it is.
Please make sure you talk this out here, or with someone trained in grief support because I can assure you that ALS killed him, it was not you. I can guarantee it.

This disease is insidious and so often we see with limbs or fingers etc that something is hard but can work, then suddenly does not work at all. This is the progression of a larger and larger number of muscles failing and some others compensating and suddenly a tipping point and all fails.

His breathing muscles were failing and failing and then failed. If you had done things differently, even if COVID had not hit, there is no guarantee you would have prolonged his life, or his quality of life. It is very common we find that PALS who don't even seem to have too many breathing issues can just stop breathing in their sleep and are found to have passed. I'm just very sad he was awake and you had to deal with it and trying to do CPR as that is very distressing.

I truly hope you can find the place of peace surrounding the events quickly as I promise you, we think we know what we are dealing with, but this monster just does its own damn thing in its own damn way and time and we have no control when that end point hits.

huge hugs too you. you have been an amazing CALS and wife, and he knew that
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,342
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm very sorry, Cristin. Tillie is right -- it wasn't anything in particular or that you did or didn't do. Remember that. It was just his time. Ulf knew all along and at the end how much you cared and how much you were doing, even if he couldn't always show it. Every day of ALS takes so much energy

We don't know why some people stop breathing even while awake and seemingly stable, but it does happen. Counseling may benefit both you and your daughter. Wishing you both much peace and strength.

--Laurie
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,783
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
I am so very sorry. As the others have said it certainly wasn’t anything you did. It was the ALS- directly or a complication like a blood clot because of it. There was nothing you could have done differently to stop it. My sister went suddenly too. It is a terrible shock - even though you knew it would happen some day it was utterly unexpected

he was very lucky to have you as a life partner and a care partner

wishing peace and comfort for you and your daughter
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
542
Reason
Lost a loved one
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
Cristin, I am so sorry for your loss of your husband, Ulf. Please believe that you did everything you could for him and he knew that. It was just his time to be set free from ALS. I hope you and your daughter find comfort in your recollections of good times with him.

Sharon
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,781
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Cristin, I'm so sorry. You did everything you should have done and none of this was on him or you. It was all ALS and the complications that come with it.

Please find peace in knowing you were a good caregiver. He knew it.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,666
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Your love for him was clearly large, and he knew it. You were a fantastic caregiver. I’m sorry for your loss.
 

Kristina1

Senior member
Joined
Jan 26, 2017
Messages
812
Reason
PALS
Diagnosis
03/2017
Country
US
State
MA
City
Grafton
I'm so sorry Cristin. This was NOT your fault. Sending love, my thoughts are with your family during this difficult time.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
416
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Dear Cristin, I am so sorry for your loss. It was obvious to all of us here how much you were doing to make his life as good as possible, and your love and concern for him really shone. I wish you and your daughter peace and comfort going forward from here.

V
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,668
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Cristin, many hearts are with you... time.
 

Jrzygrl

Senior member
Joined
Feb 14, 2017
Messages
619
Reason
Lost a loved one
Diagnosis
08/2014
Country
US
State
NJ
City
X
I am very sorry for your loss, Cristin. Your love for him was so apparent. Please go easy on yourself. You did everything you could. This beast leaves us feeling like we're constantly running a race that can't be won.

Wishing you and your daughter peace as you find your way forward. 💕
 

lisa g

Distinguished member
Joined
Apr 17, 2019
Messages
141
Reason
DX UMND/PLS
Diagnosis
04/2019
Country
US
State
FL
City
FORT PIERCE
So sorry for your loss. Praying for piece for you and your daughter.
 

Wilson2009

Distinguished member
Joined
May 4, 2017
Messages
194
Reason
PALS
Diagnosis
01/2017
Country
US
State
KS
City
Lenexa
Cristin, we are so sorry for your loss. Our deepest sympathy to you and your family
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
251
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
I'm so sorry to hear of you husband's passing. Please take heed of the words others have written.
 

blitzc

Distinguished member
Joined
Apr 20, 2018
Messages
337
Reason
PALS
Diagnosis
01/2018
Country
US
State
OH
City
Massillon
Cristin, please go easy on yourself. Please wrap yourself with all your years of memories together. Recognize the beauty of your relationship and not the disease which took him.
 
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