Question

[jwife]

It has been two months since my husband lost his battle with ALS. I still have that lingering question of what happened to end his life so quickly. Yes, he had been diagnosed for a little over 2 years and I know he was ill longer than that, but he never reached the stages that so many ALS patients do. He still had his voice (it was getting much weaker) and he was only using his bi-pap part of the day and not at all during the night. He still had some voluntary movement in his arms and legs. He started having some difficulty with his breathing when he went to bed on Tues night. He was checked by the hospice nurse on Wed. Friday morning I called for the nurse to return and she said he was only breathing using the upper part of his lungs and he was started on a very minimum dose of morphine to ease the build up of carbon monoxide. Saturday he knew everyone who came to visit. His breathing just became slower and he died on Sunday morning at 9:15. Not having to suffer was such a blessing for him, but I feel that I didn't get a chance to really say goodbye or to do all the things that I was expecting or planned. Can anyone give me any insight into what might have caused him to slip away so quickly? Maybe you have a better understanding of this than I do.
This forum is such a wealth of information. My heart goes out to each of you and your families. No one should have to know this monster of a disease.
Janis

 

[brooksea]

Janis, I'm sorry! I have no answer to your question.

I am thankful you posted. This helps me think about what I might need to say to my husband, as he is going downhill fast.

I don't think there is any rhyme or reason to ALS and it's so individual. I know you did the best you could!

 

[10steps]

The head neurologist for the ALS clinic described it as falling off a cliff. A person manages and then one day the connections are destroyed to the point that the muscles can't do the job. I'm sure you've heard something like this before. I have no answers.

 

[Ms. Pie]

I'm so sorry for your husband's passing. Wish I had some answers to your questions but don't. I wish you peace of mind and heart.

 

[tmasters]

I'm so sorry for what you have been through.

I'm not a medical expert, but I think you have given clues to the answer. Breathing is most difficult at night. If your husband found a need to use the bipap occasionally during the day then he NEEDED it at night. Lying flat on your back is the most difficult position to breathe in. Also, morphine inhibits breathing function and can also lead to fluid buildup in the lungs, causing further complications.

-Tom

 

[jwife]

Thanks, Tom. He used the bipap during the day for 4 hours because that is the minimum amount of time his neurologist said he needed it. He tried at night, but could not get comfortable with it. He slept in a hospital bed with his head elevated. There did not appear to be a fluid buildup. There was no rattling with his breathing even at the end. I was told the morphine would allow him to breath less rapidly so that his lungs could better expel the carbon dioxide. His breathing just slowed down and became less deep until he finally stopped. He did lose consciousness for the last 5 hours. This is why I am so confused. I do have to say that he died so peacefully. His greatest fear was of not being able to breathe. I'm sure God knew that. There are so many blessings - he was able to say goodbye to his brothers, some of his best friends, my family and our son and his family. Our pastor visited with him. I am sure it is a question to which I will never really know the answer. It is me who is still struggling. Trying to figure out why he went so quickly.
10steps, your answer is probably right. At least that is what seemed to happen. I had just thought that ALS was a slow progressive disease that took a little at a time - not a little and then all at once.
Thanks to everyone for your support.
Janis

 

[momap53]

Janis,
I'm so sorry for your loss and that you didn't have the time you needed to let go. I'm so glad that you were able to share these feelings with us so that the rest of us will be reminded to say the things we need to say to our loved ones.
Deb

 

[Katie C]

Janis... I have a pretty good idea of how you're feeling. People would ask me if Glen died suddenly (those who didn't know the story). The answer of course was yes and no.. he'd been sick for years and then suddenly he was gone. In his case, though, he'd developed aspiration pneumonia and died within 24 hours! In fact we were waiting for the hospice nurse to come out for an evaluation, as he'd gotten much worse over night, when he simply stopped breathing. And yes... it's very unsettling because we think we've spent all this time preparing for the inevitable and when it happens.. we realize there was really no way to really be prepared. All I can say is be good to yourself... give yourself time, it IS your friend. For me, counselling helped, and my widows support group has helped a lot. Sending hugs.

 

[Peg B]

Dear JWife,

I am so sorry for the loss of your husband. The death of a loved one is so very dificult. I hope my story helps you some.

My oldest sister had cancer for 12 years. She lost her battle on Friday December 31, 1999. She was both very sick and very well throughout the 12 years. We always said she lived with cancer. Her biggest fear was not being able to get out of bed at all. She was on hospice and had to use a wheel chair. On Tuesday of that week, her husband moved her leg to help her get comfortable in bed. The leg was already in a cast, but it broke again. She went to the hospital and came home on Wednesday in a semi conscious state. I spent the night but she continuted to sleep all Thursday into Friday. On Friday morning, with several people around, she suddendly woke up, sat up in bed, and looked right at me and said, "You know what this means." and I said, "Yes, I do." (She was no longer going to be able to get out of bed.) She passed away that afternoon a few minutes after 1:00.

I believe she stayed longer than she really wanted to for all of us, but she set her limit and well it was time for her to go. You spent your time with your husband living, not dying and I hope you can find such peace and joy in that. God Bless you. Peg

 

[Barbie]

It is all such a sad mystery isn't it...

 

[KissJ]

I'm so sorry for your loss. Reading your posting helps me to think about the future my husband faces. If my husband doesn't have to suffer, and go quickly I will be so grateful. This is my biggest fear...the suffering, the discomfort, pain, and how long it could last. Although you didn't get to say what you wanted to, I'm sure your husband knows how much you loved him. You were with him in sickness and health! God Bless!

 

[Danijela]

I agree with Tom. Dani

 

[notme]

Hi Janis

I'm so sorry for your loss, and I'm sorry you're left wondering what happened.

ALS, as you know, affects different people in different ways. Apparently, your husband's respiratory muscles were effected by what you say about the RN saying his lower lobes weren't working. That's your answer--in what area the monster settled.

Don't worry--you didn't hasten his death by allowing the nurse to give him morphine--it did keep him comfortable. As already said, the bipap helps--and perhaps should have been used at night every night. But once those muscles stop working, there is just no way to breathe without a vent.

You said his fear was struggling to breathe. Perhaps your answer is simply that thankfully he didn't have to realize that fear and went peacefully. If you can, try to find solace in that.

 

[cubcake]

I just don't want my Fred to be afraid. I will take whatever I have to, for the rest of my life, if he can just escape that.

 

[Georgia Peach]

My husband is in a slow decline. We all need to be reminded that each day is precious for both of us.

So sorry for your loss of your beloved husband.