What actuallly kills an ALS patient?

Status
Not open for further replies.
Jacquelyn---I'm sorry about your dad. This is such a hard time! My sis was the CALS for my mom and I just visited when I could, but I was there for the last 2 weeks. I think she went through all the stages of the disease in only 13 months. She was completely bedridden at then end with only a tiny bit of motion in her hands and a little ability to verbalize and eat. Even though she had a feeding tube, she tried to eat instead of use it. She loved her cappucino in the mornings, but it was harder and harder each day. We knew we were really at the end when she could no longer suck the tiniest bit out and she asked for it in the tube.

I was there for a full week and she didn't seem to be "going anywhere". But then she got much more agitated and emotional and was weaker each day. We were continually surprised that she was with us the next morning. We were giving her a few drops of morphine every 4 hours to help her breathe better. Her breathing was very shallow---only the very tops of her lungs were clear; the rest was full of fluid. The last few days we gave her some type of eyedrop by mouth that dries up the secretions so she didn't have so much fluid rattling around in her throat. From Tuesday to Saturday she really didn't wake up. Tues and Weds. she might open her eyes ifyou spoke to her, but not respond. Or sometimes grunt---like when my bro. asked if she wanted to hear him play the banjo! I think from Wednesday p.m. until Saturday afternoon, she didn't awaken at all. She died on a Saturday when my sister and I were with her. She just took longer breaks between breaths and was gone in a minute or two. It was such a surprise when we had expected it any moment for a whole week! But it was peaceful and not painful. She had been so scared when diagnosed that it would be horrible. Hospice was very helpful in terms of keeping her comfortable---morphine to help breathing, drops, and also an anti-anxiety med.

We read and re-read the information on dying to find out what it would be like and it didn't really help. She had so many of the signs that it was imminent for a week that we were very much on edge! So I hope this helps for you to know what it was like for us and it can be very peaceful. Just love him all you can and try to remember to touch him and hug him. One of the things we regret most is that we didn't actually put our arms around her and hug her when she was bedridden the last 6 weeks. Sure, we touched and stroked and massaged hands and feet, and got in bed with her and cuddled, but no real hugs. And she just loved having her hair brushed, HARD! lol. I thought I was going to draw blood, but it made her smile like nothing else!

No one could answer our questions satisfactorily and tell us what would happen. I wish my mom had prepared me for the death of a loved one in advance. But you can only live it. Just love him all you can and cry with him if he cries, laugh with him, and just enjoy every minute with him because nothing will ever be the same again.

God bless your family. And everyone else here on this forum.
Sara
 
Irma,
I had to reply to you because of your name misspelling LOL my sister in law is named Orma the only one other than her grandmother i have ever known.:-D
 
Wow! Really? After I sent off the post and noticed the O instead of an I, the first thing that came to my mind was "Orca." LOL!
 
The final moments

My father died of MND back in September after having had MND for at least 8 years. We were all concerned about the end, and what would happen. A few days before he died he went into hospital just to try out a NIPPY 3 breathing machine. (Only 10 days before we had been out on family outings.)

In hospital CO2 levels were of course monitored. However, his lung capacity at this stage was severely reduced and his breathing laboured, although even a couple of hours before he died we did not realise the end was so near, except when the nurse listened to his heart.

His passing away was extremely peaceful. (He was on a very slight dose of morphine.) He was able to nod to us right up until the end. Despite the machine continuing to 'breathe' for him, we new when he had died. Although of course we were and still are greatly saddened, his dying moments were not what we had dreaded.

I hope this helps.
 
Thank you for sharing that. Everybody hopes for a peaceful transition and you Dad's sounded like her reached that goal. For anybody wondering what to expect, the hospice website has articles on how to prepare and what to expect during the final moments. Bless us all. Cindy
 
So sorry for your loss. But glad to know that his passing was peaceful. Thank you for sharing this.
 
jaelke, what a peaceful and blessed way to die. I know you miss your loved one, but it's nice to hear he had a peaceful departure. God bless each one of you, and may he rest in peace.

Irma
 
I too am concerned about how my husband will die, We went to clinic like maybe 3-4 months ago and they said his breathing was at 17, He told me that he didn't try very hard to breathe his best, He hates going to clinic, they are coming to the house now. They were here about 3 weeks ago and very surprised to see him in his chair UP. He did the local telethon here and everyone was amazed how many people called in because they knew him. He truly is an amazing man. I am thinking now since the neuro comes to the house, how will i know what his breathing is. He is on no oxygen, How will I know if he needs it? They have done no bi-pap increase since then, so I never really thought about it until I joined this forum and was thinking how will that happen? I am sure that I need to call tomorrow and ask them about this, I truly admire each and everyone of yall.......I am addicted to this site...............Thanks Again!
Annette
 
Jacquelyn---I'm sorry about your dad. This is such a hard time! My sis was the CALS for my mom and I just visited when I could, but I was there for the last 2 weeks. I think she went through all the stages of the disease in only 13 months. She was completely bedridden at then end with only a tiny bit of motion in her hands and a little ability to verbalize and eat. Even though she had a feeding tube, she tried to eat instead of use it. She loved her cappucino in the mornings, but it was harder and harder each day. We knew we were really at the end when she could no longer suck the tiniest bit out and she asked for it in the tube.

I was there for a full week and she didn't seem to be "going anywhere". But then she got much more agitated and emotional and was weaker each day. We were continually surprised that she was with us the next morning. We were giving her a few drops of morphine every 4 hours to help her breathe better. Her breathing was very shallow---only the very tops of her lungs were clear; the rest was full of fluid. The last few days we gave her some type of eyedrop by mouth that dries up the secretions so she didn't have so much fluid rattling around in her throat. From Tuesday to Saturday she really didn't wake up. Tues and Weds. she might open her eyes ifyou spoke to her, but not respond. Or sometimes grunt---like when my bro. asked if she wanted to hear him play the banjo! I think from Wednesday p.m. until Saturday afternoon, she didn't awaken at all. She died on a Saturday when my sister and I were with her. She just took longer breaks between breaths and was gone in a minute or two. It was such a surprise when we had expected it any moment for a whole week! But it was peaceful and not painful. She had been so scared when diagnosed that it would be horrible. Hospice was very helpful in terms of keeping her comfortable---morphine to help breathing, drops, and also an anti-anxiety med.

We read and re-read the information on dying to find out what it would be like and it didn't really help. She had so many of the signs that it was imminent for a week that we were very much on edge! So I hope this helps for you to know what it was like for us and it can be very peaceful. Just love him all you can and try to remember to touch him and hug him. One of the things we regret most is that we didn't actually put our arms around her and hug her when she was bedridden the last 6 weeks. Sure, we touched and stroked and massaged hands and feet, and got in bed with her and cuddled, but no real hugs. And she just loved having her hair brushed, HARD! lol. I thought I was going to draw blood, but it made her smile like nothing else!

No one could answer our questions satisfactorily and tell us what would happen. I wish my mom had prepared me for the death of a loved one in advance. But you can only live it. Just love him all you can and cry with him if he cries, laugh with him, and just enjoy every minute with him because nothing will ever be the same again.

God bless your family. And everyone else here on this forum.
Sara

Sara,

Thank you so much for sharing your story with me. It touched my soul. I am going to give my Dad a hugh hug right now.

Jacquelyn
 
Sara, so sorry I just read your post. God bless you, and your family, and may yor sweet mom rest in peace. I agree with you, it is hard to watch a loved one die, I know, I watched my son take his last breath. I know eactly what you are going through. Our loved ones are not in pain anymore, they are with their Father, waiting for us on the other side. God bless!

Irma
 
Hi all,

I also used to worry so much about how my husband Andres would die, would he choke? Suffocate? Suffer? I would like to share briefly how it really happened.

A couple weeks before he told me (with a apecial system we had) "I feel I am going to die soon" He was getting weaker and weaker each day and finding it harder to breathe, at the end things really sped up. So we had a family meeting to discuss his last wishes, no ventilation, hospital, or attempts to extend his life, though he was open to have any anxiety medication or morphine if needed. He never tok medication and refused a bipap oor any kind of breathing support, after 6 years with ALS he was very tired and ready to leave his body. That weekend we had a reunion with friends so people could say goodbye to him. The next two days he didn't get up from bed I massaged him and read from the spiritual texts we were reading to help prepare him for death ( we were on retreat for the last month just focused on getting ready). He was not suffering much, just felt very tired. On the third day he got up and agreed to go out in the garden, it was a beautiful day and he was feeling good, he went into a very exalted state and he was laughing a lot and telling his dad and me how much he loved us, and thanking us for taking care of him, over and over again. It was so beautiful to see him that way. That night he started prespiring a lot from his hands and feet, we had to dry him with towels, he did not want me to sleep so asked me to stay up and massage him and talk, he told me over and over how much he loved me (although it was getting much harder to communicate) and just wanted to stare into my eyes, so I put peaceful music that friends had brought over for these times and spent all night like that, he was laughing and saying that he felt good. I even told him that he had laughed more that day than in the last 5 years. He didn't sleep either that night until morning whhen he fell asleep for a few minutes and when he woke up again soomething had changed. He was very wide eyed and exalted, looking everywhere and had difficulty responding to us (by blinking) he went in and out of this state and we had windows of time where we could communicate with him, he could understand everything. We called his brothers so all the family was there and we cared for him and spent the whole day with him. We even had all our meditation group come and do the practice to prepare for death around his bed that evening. At night he was very tired and I told everyone to say goodnight ( and goodbye, as I knew he wouldn't live through the night) one by one they said their goodbyes, and asked if he was ready, he blinked "yes" and was laughing and just so happy. When we were finally left alone I asked if he wanted a masage and once I started he had trouble breathing so I changed his position and suctioned him until he was breathing fine again looking very relieved, I asked him if he wanted the patch now, (we had a narcotic patch ready to relax him if he needed it, he knew that if we put the patch on he wouldn't wake up) he said yes so I proceeded to put it on, and when I looked back at his face I thought he was asleep, but he had died. his heart stopped the moment he decided he was ready to go. Very peacefully and totally aware.

Hope this helps ease some of the fear. Obviously each case is different but the true teaching for me is that things never hapen the way you think they will. I spent so much time agonizing over this question of how will it happen? and now I see all the scenarios and the worries were in vain...everything happened so differently.

My blessings to all of you,

Citlalli
 
Citlalli, thank you very much sweet lady, for sharing this with us. We all know where Andres is, and there is no doubt in our minds! Bless you, and your entire family. Our Pals are such special people, they are so courageous!God bless Citlalli! Andres Vive!

Irma
 
That was very touching, you can just feel the love you have for your late husband and how much he loved you.It brought tears to my eyes.
 
Thank you for sharing that with us. It means a lot to us who are dying soon, that the end can be much different than we think at times.

God Bless
Capt AL
 
Status
Not open for further replies.
Back
Top