Cristin's Ulf

[Cristin P]

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]

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]

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]

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]

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]

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]

Your love for him was clearly large, and he knew it. You were a fantastic caregiver. I’m sorry for your loss.

 

[Kristina1]

I'm so sorry Cristin. This was NOT your fault. Sending love, my thoughts are with your family during this difficult time.

 

[vltsra]

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]

Cristin, many hearts are with you... time.

 

[Jrzygrl]

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]

So sorry for your loss. Praying for piece for you and your daughter.

 

[Wilson2009]

Cristin, we are so sorry for your loss. Our deepest sympathy to you and your family

 

[old dog]

I'm so sorry to hear of you husband's passing. Please take heed of the words others have written.

 

[blitzc]

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.