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Cristin's Ulf

DFM20

Member
Joined
Apr 29, 2019
Messages
19
Reason
CALS
Diagnosis
05/2016
Country
US
State
MO
City
Springfield
Cristin, I am so sorry for your loss. My prayers are with you and your daughter. I must agree with everyone who has said it was the ALS and not anything you did or didn’t do. That being said, I know very well how difficult it is to accept that reality. We always would like to believe we have more control than we really do. Please go easy on yourself, as others have suggested, and also cut yourself some slack when you have times when that is hard to accept. This is a very difficult time, but know that you have a group of listeners here whenever you need them, and they truly appreciate what you’re living through. God bless.
 

Scotiaspirit

Distinguished member
Joined
Nov 21, 2015
Messages
191
Reason
PALS
Diagnosis
11/2015
Country
CA
State
Nova Scotia
City
Dartmouth
Christin, we are sorry for the loss of your husband. May his soul soar like an eagle. We hope your beautiful memories will help ease the grief you feel. ALS sucks and is a wrecking ball to too many lives. Our deepest sympathy and condolences to you, your family, friends and loved ones. May the blessings be. 🌺💐❤❤🌺💐🦅
 

[email protected]

Distinguished member
Joined
Jan 3, 2016
Messages
238
Reason
PALS
Diagnosis
11/2015
Country
US
State
Iowa
City
Iowa City
My condolences to you and your daughter for this sudden loss. I can only echo previous posters about your caregiving and compassion.

Ed
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
871
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Oh Cristin, I'm so very sorry for the loss of your husband. What a shocking and heartbreaking thing to happen all of a sudden. Please be kind to yourself and know you were the best wife and caregiver to him. Again, I'm so sorry.
 

Cristin P

Member
Joined
Aug 22, 2018
Messages
17
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
Hello, I spoke to Ulf's neurologist yesterday and she mentioned that the symptoms I described could have been something acute like a pulmonary embolism. He did have problems with swelling in his left foot and we put a compression sock on every day. The last few days I hadn't put it on him and now I feel so guilty that something I did wrong that caused this. I never got a clear answer from the ER doc what exactly caused his death.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,911
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Please don’t blame yourself. Maybe he had a clot. If it was already there the sock wouldn’t have stopped it from moving. Maybe he didn’t have a clot. Don’t torture yourself with what ifs. You did your best. Sadly, it was his time.

grieve, as you are entitled to do. Hold your daughter close. Eventually the acute pain will ease but Ulf will always be in your heart
 

DFM20

Member
Joined
Apr 29, 2019
Messages
19
Reason
CALS
Diagnosis
05/2016
Country
US
State
MO
City
Springfield
Cristin, again I am so sorry for your loss and so sorry that you have to bear the burden of what-ifs. We CALS try so hard and try to anticipate all eventualities until we can deceive ourselves into believing that we are actually in control of the outcome. But, alas, ALS has its own path and idiosyncratic timetable. The best we can actually do is love our PALS and do what’s in our power to ease the burden of their journey. It sounds like you were a loving partner and did just that. God bless you and your daughter.
Dave
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,460
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
You don't have to bear any what-if burden, Cristin. As Nikki says, if it was a pulmonary embolism (or a stroke or a heart attack), a sock wouldn't have saved him.

It is not likely that the ER doc could know exactly how he died, so I can understand their not speculating. But the root cause of death, I'm confident, is down to ALS, which diminishes the body's ability to deal with any pulmonary or cardiovascular event.

You said he was not happy with his life (again, ALS, not you). Let it be that he is at his peace, and you can find peace for the two of you, as Ulf would want.

--Laurie
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,560
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Truly Cristin I will pile on with the same - ALS was the culprit, even if it was a secondary complication like a clot. You could never have saved him, please, please don't allow guilt to consume you. This disease has taken enough from your lives, don't let it continue to take by letting this eat at you.
Again I would really encourage both you and your daughter to seek counselling by someone who specialises in grief and loss. I was stunned at what the grief was like after my Chris died, I had no idea what it would be like.
I feel that his denial has now started to eat at you a little as you feel you should have somehow magically saved him from any result of this disease. The suddenness of his ending has also left you in some understandable shock.
So much to deal with, my heart goes out to you and your daughter. As a past CALS I assure you, this is not your doing in any way.
 

ReginaS

Forum Supporter
Distinguished member
Joined
Nov 20, 2018
Messages
181
Reason
Lost a loved one
Diagnosis
02/2018
Country
US
State
LL
City
--
Cristin, I am really sorry for your sudden loss and the shock that comes with it.

I sometimes find guilt in order to hold on to the illusion that I had or have some control over something. There is really very little control when it comes to ALS. As a caregiver I did my best and afterwards it is tempting to think about things I could have done differently but really, we did out best - tired and exhausted moments included. This is a rather difficult road to travel - even more so with little children.

You worked so hard and sometimes against resistance at helping Ulf and your daughter. You were so effective! I imagine your husband telling you how glad he is that he could die when he did. Free from ALS now and no more suffering. My PALS had to go through several days of extreme thirst /dryness as he was dehydrated and did not have a feeding tube. There was no blood left to draw in his veins. In our ALS group there were a few people who could die much quicker and earlier.... It is what it is.

With all my heart I wish for you that you will find peace over time and am sending you virtual hugs.
 

Tkthiede

Active member
Joined
Feb 25, 2019
Messages
57
Reason
PALS
Diagnosis
01/2019
Country
US
State
WY
City
Cheyenne
My sympathies to you and your family. May the happy memories you have bring you peace in this difficult time.
 

EricInLA

Forum Supporter
Active member
Joined
Oct 20, 2019
Messages
61
Reason
PALS
Diagnosis
01/2020
Country
US
State
CA
City
Los Angeles
I am so sorry for your loss. It seems part of the reason this is such a tough disease is because of the guilt it mercilessly instills in both PALS and CALS. As many with experience here have said, you should not bear this guilt! And there are plenty of people who can help you release it. Also, give yourself some time to deal with the grief. It does not go away quickly, but over time, it does get better. I hope that your memories bring you happiness, and that his memory is truly a blessing.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
428
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Cristin, one of my friends who was a CALS said her husband went suddenly. I have read of other cases where the PALS went suddenly, so I think it is not uncommon. Please don't spend time blaming yourself. I hope you will find peace in your daughter and the memories of happier times together.
 

Bestfriends14

Forum Supporter
Senior member
Joined
May 7, 2017
Messages
871
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Cristin, when I initially read your story, the first thing I thought of was a PE because of how Ulf described how he felt before he passed. I nearly lost my husband last year due to a PE, and if the medics had not been across the street when I called 911, I would have. He said he had those exact symptoms before passing out.

Please, please do not be hard on yourself. Sadly, a PE is how some PALS pass and it has nothing to do with what you could, or could not, have done. It is the nature of this beast, unfortunately. Be kind to yourself, and know that you were a loving and dedicated CALS that gave Ulf the best care until the end.

Hugs to you.
 

Cristin P

Member
Joined
Aug 22, 2018
Messages
17
Reason
CALS
Diagnosis
08/2018
Country
US
State
CA
City
San Diego
Bestfriends, Thank you for sharing your experience. Although we are supposed to accept the uncertainty that comes with ALS, I have always struggled with it. And now having that extra layer of "uncertainty" in why exactly he died, when we all were relying so heavily on Nurown getting approved in 2021 and fighting to get him that treatment, was adding to my grief. You sharing your experience helps me put a little bit of that uncertainty to rest. I read up on PEs and it seems that some people can survive them, but a comment made earlier by Tillie has given me a lot of comfort. A body ravaged by ALS is so weakened that he just probably had no chance to survive the PE, no matter what I could have done.

Since he already had trouble chewing and swallowing and had said he didn't want a feeding tube (we discussed it the day before he passed), I guess all things considered, a sudden death like this was probably the best thing for him instead of slowly starving/dehydrating until the end, even though it was hard for me and my daughter to experience.

We are 2 weeks out from his passing, and I've given back the bipap and Hoyer lift (they were rentals), the shower buddy loaner back to the ALSA, and I also donated his manual wheelchair to the ALSA loaner closet to help another pALS. I threw out the urinary bottles and the raised toilet seat (I didn't think those would be sanitary to pass along). Although at the time it felt a little bit like I was moving on too quickly, what I really realized was that getting rid of all the trappings of the ALS has helped me to remember the man he was before the beast struck him. The last year for us was so hard, and with quarantine and home schooling, and working from home, I was admittedly too over burdened and could only see what was right in front of me, namely, the ALS. I've spent the last week grieving the man he used to be, instead of remembering him as my pALS. And I think I'm feeling better because of it.
 
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