How it happened-the end

[MLOx]

My mom passed away August 10th, she had Bulbar onset, about 20 months from date of diagnosis. I'm sharing the story because I know I needed to hear stories, how does this happen, what issues come up, how to prepare. The answer is you can't prepare, you may be tired and confused, scared and relieved....that's the terrible thing --because it's gradual you have time to cry and feel sad and angry and then when it gets really bad you feel so bad you want it to end, then the end comes and you don't want it to end, and then guilt settles in followed by everything else all mixed up. My mom started getting more uncomfortable (nurse called it terminal agitation), couldn't get comfortable, different parts of her body hurting, trouble sleeping and then sleeping a lot, her lungs got filled with fluid, she went off food which decreased the fluid intake and helped her lungs. Sleeping most of the time but not really restful. Heart rate high 120's, 02 bouncing between 85 and 65, and just uncomfortable, in pain, and losing the ability to write and communicate, very weak. The nurse increased ativan and morphine, she would come out of the 'drug rest' and feel uncomfortable, nothing was working, she was anxious because she knew it was the end and was really not able to communicate as well and could only get one word written. So we would all get confused as to what she wanted. We stayed by her side, she slept as long as she was on the medication. We had about three days of this, then she went of water by choice, then the meds were put closer together in time to keep her comfortable. She passed away the next morning, her last moment- I don't think she was truly aware, but she opened her eyes, stared forward for a moment, closed her eyes and took her last breath. The end was peaceful but the days prior were so difficult and confusing. I don't know if this will help anyone but maybe it will. I love you mom.

 

[Danijela]

I am so sorry and saddened to read this. And feel for you for losing your mum. 'Terminal agitation' - never knew a word for it but I think I understand what it involves. I have discussed with my partner what kind of end he wants. He said 'lots of drugs'. It breaks my heart but at least I know... D

 

[vzandt]

I'm sorry you've lost your mom. Thank you for posting this.

 

[rachelg]

I am so sorry. Thank you for sharing.

My husband spoke only this week with the hospice team about end of life choices and issues. He like Dani's L wants drugs - lots and lots of drugs - he doesnt want to know whats happening he just wants to sleep until he no longer wakes.

It truly is heartbreaking to discuss these things in advance but now we know - we know.

Bless you.

 

[Miss]

My husband's end came very suddenly. He woke up in a great mood because we had an exceptionally good weekend. He met friends at a local pub on Friday, our 17 year old hung out with him on Sat, neighbors and brother came over and cooked out and watched the first Dallas Cowboys game on Sunday. Within an hour of waking, he suddenly had trouble breathing. We called 911 because we were not yet set up for him to be vented. After a few minutes, his breathing became easier. I sat next to him talking to him while the CNA gave him a sponge bath. Suddenly, his color began to change and he was sort of looking past me. He took his last breath as the EMT's walked into the house. He had a moment of anxiety when he was having trouble breathing, but then he was calm and peaceful. So calm and peaceful, neither the CNA or I had any idea that we were losing him.

 

[momap53]

Mlox, so sorry about the loss of your Mom. You've spelled out very well the back and forth nature of your feelings near the end. I'm a PALS, but lost my Mom to Parkinson's and Leukemia last November and can relate very well to what you describe.
My CALS know that they should not spare the drugs when the end is near. At that point I hope I've said everything that needs to be said and just want to be made comfortable. We talk openly and frequently about this.
Prayers going up for you and your family as you make the transition to life without your Mom.

 

[cubcake]

I can't tell you how grateful I am to MLOx for starting this thread, and for all who responded. My husband has FTD, as well, so not only can we not have these discussions, he doesn't even know he's going to die. The weight of making all these decisions is very heavy on me, and I appreciate the insight of so many who have or are dealing with this.

Thank you, and I wish you peace.

 

[MLOx]

Thank you all for your thoughts, and stories, it's comforting to me that others have either chosen or know to choose medication. We didn't have that particular conversation with my mom, we had all the others, but that one I didn't know about until that week, that when you get close to the end do you want to be kept aware? What a difficult question, I honestly don't know what mom would have wanted which is what upsets me a bit, but she was absolutly not herself, not able to direct her care, not able to relax or be out of pain and so as it happened it was quick after the increase. I'm hopeful that some of you are aware of this question of drugs at the end...I only learned that week from our CNA who had experience with death that it is a common thing. Having your loved one make that decision prevents some of the confusion and pain for CALS ...regardless of the direction of the decision. I do think hearing these stories about how the last weeks might progress are helpful for CALS, I was hungry for information, maybe because information would help me feel like I could manage, I could deal with it. In the end we did, and I love my mom dearly, there is a big hole in my heart and life --but her spirit is always with me. Thank you all. By the way, we purchases a shower chair from Shower Buddy, it has a tilt function which was essential for her, we donated it to ALS chapter in Colorado, but I would recommend it --it made showers so much more pleasurable and safe for my mom. ALso, I want to send a thank you to all of you who answerd my posts on things like breathing, diapers, and such.....you all are so wonderful to share your thoughts and time --it made a difference for me and my mom. Thank you!

 

[WellsRuby]

MLOx, sorry to hear about your mom but you are in my thoughts and you were a wonderful daughter for the care you gave your mother.

 

[Ms. Pie]

I'm so sorry for the passing of your Mom and the void you feel in your heart. Thank you for posting your experience. I have had this discussion with my husband, my doctor and my family. Loved ones need to have this conversation with their PALS! The end is what I fear most but my fears are eased with the knowledge that I'll be kept comfortable. I hope it' not for years but none of us knows when our time will come.

God's comfort to you and all who love your Mom.

 

[Barbie]

It's not death I am afraid of--it's dying...

 

[scotslassie]

Thank you MLOx for your honesty. My aunt's meds were increased and we were told, to the day, when she would pass. It was very peaceful, and she spent the morning seeing her grandchildren. You are in my thoughts.

 

[poppy62]

Sorry for your sad loss MLOx.
Thanks for sharing your experience, reading your thread has prompted me to broach this subject with my hubby.
He got upset, I got upset, but at least we got to talking about things..

 

[Atsugi]

Being in agreement is critical, so talking about the manner of dying is crucial.

My Krissy directed all her care, sticking to herplan, even when she could no longer communicate at all. That was her last day. The morning and evening was spent with family. Morphine was regularly dosed according to plan, and increasing according to her wishes. At the end of the evening, when the nurse said it was time, the family literally surrounded her again, we held her hand, and her pulse faded away. She never felt uncomfortable at all.

 

[ottawa girl]

MLOx,

I am sorry for your family - your love of your Mom came through loud and clear in your posts.

It's an important issue and I am grateful that you have generously shared your experience. It is comforting, in a way, to read your and others' stories about the "end game". Our modern culture seemingly fosters a collective sense of invincibility and largely discourages acknowledgment of death and dying - let alone a frank conversation about it.

Personally for me, it's not the "going"- it's the "leaving". In my mind and heart, these issues are separate and apart. As I contemplate my own end game, my "final" wishes evolve. Indeed, I will discuss them with with my family, once I have discerned what they are.