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Jan 3, 2008
Hi Everyone,
I am new to posting a thread but have been reading the stories on this web site for quite awhile. My mother was diagnosed with ALS in October of 2006. She is in her last stages now. She is totally dependent on others and can not speak well at all. She is on Hospice and also has 24 hour care through an independent agency in her home. I thank God for those ladies that take care of her because it would be very hard for me. I would do it if I had to but I have a husband with 2 young children and a full time job as a school counselor.
Anyway, the hospice nurse told me yesterday that she hears some rattling in my mom's chest and thinks that she has some aspiration pnemonia. She said usually in a healthy adult it will clear up in a couple of days but it could turn into Bacterial Pnemonia which I know is what usually gets these patients in the end. I am scared that this is the beginning of the end for her. It doesn't matter how long you try to prepare for this when it is knocking at the door you are just not quite ready to answer. She is on a feeding tube but does not want the ventalator. I worry a little about her death experience. I know that Hospice can control her pain but I do not want her to be scared at all. Have any of you experienced a death of a loved one first hand and would like to share it? I never have and it scares me a little for myself and for her.

Hi Jdale. Welcome ot th forum. I am really sorry to hear about your Mom. We have had quite a few reports of peaceful passings on this site and from what I can see the difference is that it helps when folks do as you are and do a little research ahead of time. It seems to help ot be in coping mode rather than reaction mode.

The hospice website has a few articles that may help, including one very specific article on what to expect. I hope this helps a little. Cindy
jd, oh dear God, I feel so bad! How in the world did I miss your post? I wish I had spotted it earlier. I can share something with you, if you don't mind. This is what I experienced with my son at the end, but dear God I don't want to scare you. I really don't want to do it, but I feel I must, so here it goes. Please promise me that you will accept what I am fixing to tell you. It's not going to be good, but here it goes............

On a Saturday evening around 5:00 pm, June 2nd, my son started experiencing quite a bit of trouble breathing. Even though he had just asked me to sign the DNR documents for him, I still called the paramedics. They were there in no time at all. I presented them the DNR papers, Jesus it was hard for me to do that. Okay, they told me he was close to the end, so they hooked him up to oxygen, to make him comfortable, he had taken his dose of morphine. Oh God, I am feeling crappy this minute. I am in tears! It's okay, I still want to help you. We were up all night Saturday with him, the house was full, and awake all night. The next day Sunday, the wait continued. We stayed close to him, my baby was dying before our eyes. The rattling in his chest started in the early part of the afternoon. Hospice told me this rattling occurs when they are near death, my mom did that too. By 5:50pm, my baby was gone. I feel so bad for you jd, I know the pain you are going through. I must quit typing, I can't see, but if you need more info, or shared thoughts, plese, please let me know. May God bless you. My son would have loved the kind of help I am offering you right now, he was that kind of a person. Be strong, you can cry, it is a relief to do so, in order to release the pain, but reach out to God.

Jdale - I certainly feel for at this time. I have been through the dying process twice in the last year. First my mother and then a month later my father in law. Both with forms of dementia and unable to use their tongues. Irma's post was very similar to what we went through. There didn't appear to be any pain, the hospice people were so attentive. They both died peacefully. And I think it has really helped me to know what to expect for myself as a PALS. I felt at the time my job was to let them know that I was there with them and it was OK to go. God bless you and your family.

I have been present at the passing of two dear people in the last few years, my dad with ALS and a family friend with lung cancer. I don't know if it was a factor of the way the illness functions or simply individual response, but my dad experienced far less anxiety regarding breathing, though both in the end were with their loved ones and made the final transition at peace. With ALS, my dad experienced shortness of breath and exhaustion in the days before his passing, though he was still attempting to walk a short way each day with his walker. As the muscles operating his lungs ceased to function well, the carbon dioxide in his blood began to rise, which caused mental lethargy as well, and eventually, he was unable to regain consciousness after falling asleep. He was in this state for for more than 14 hours, asleep (on oxygen for comfort though I don't know for sure that this was helpful or necessary) and gradually his breathing ceased and his heart slowed. There was no gasping for breath, or fear, or even discomfort for him in his final hours, though the previous day had its difficulties. I only hope my mother's time, when it comes, and my own or anyone's is as peaceful and so filled with love from the people present. It might seem crazy, but ALS gave us this one tiny gift; we were all able to get there for my dad. Because his lungs themselves were functional and his mind was still intact, he was able to be on a ventilator and alert until my brother flew in from out of town. Dad was able to say goodbye to all of us, which was his wish, and then chose to be disconnected from the ventilator. He had some precious hours with us after that before the illness took him away.
It is hard how painful this is still to write even though it has been more than a year. The pain of losing him hits me at unexpected times. I am learning to roll with it, and keep breathing myself. Holly
I was with my father constantly the whole day or two before he died. I didn't know he was going to die exactly then, but I guess I knew it could be any time. Anyway, he had been short of breath a lot the weeks before dying, but not terribly distressingly so. He would have morphine every now and then for that purpose. His last breath was peaceful. I'm not sure he was conscious at the time, but I stayed with him, and talked to him, and did things that I thought would make him comfortable, as if he were aware, just in case. He definitely had been aware and communicating with me about 8 hours before he died.

I, too, had never experienced death, other than to go to a viewing or funeral, or to play the organ for many funerals. I thought it would be scary, and worried about what it would be like if I "had to be there and actually see my dad dead". However, it was not scary at all, and I'm so glad I was there. He would not have wanted to be alone.
Thank you everyone!

Wow! :-D Thank you for all the advice and for responding to my thread. I have heard from others that the passing is usually peaceful. I just do not want her to be scared that's all. I do hope that I will be there when it happens just for her comfort but I realize I may not be.
I know it was hard for some of you to tell of the passing of your loved ones but I really do appreciate it.
I also wanted to know if any of you have thought about getting the blood test done to predict your chances of getting ALS if you had a family member who had it? I think there is only a 10% chance of ALS being genetic but I do know that they have a test for it. I have considered it but since no one else in my family has ever had this then it is probably not genetic.

Just a note: The Hospice nurse called me and told me that the rattling sound in my mom's lungs has stopped and they sounded clear. I was relieved. She sounds a lot better.
jd, pleased to hear that your mom is doing better.

My Mom also has ALS

I am so glad I found this forum. My mother has ALS and is going tomorrow to have a feeding tube put in. She is completely dependent on others now and is unable to speak, although she has a letter board that she spells out what she wants to say to us and her mind is as clear as ever. God love her, she has accepted everything that has happened to her with such grace.

I don't know what to expect from this disease from this point on. Is there a predictable progression? I guess what I mean is this, now that she is at the point where she is unable to speak or swallow, has limited use of her hands, what should we expect to happen next?
Hi Edith....I am sorry to hear that you mom has this terrible disease.

My mom had bulbar ALS. She passed away September 2007 after having been diagnosed June 2006. She started having symptoms Dec 2004. My mom was unable to verbally communicate had a feeding tube inserted Jan 2007 and started to have breathing issues in June 2007. Mom was still very much mobile and her fine motor skills were excellent when she went into respirtatory failure.

Everyone progresses at different rates. You can only take one day at a time and deal with the situation as it occurs. Feel free to ask any questions. Everyone on the forum are very helpful and supportive.

Jdale, I'm so glad your mom is doing somewhat better. It sounds like her immune system is strong enough to deal with the pneumonia and she is rebounding from that.

One more thing about being with a loved one at the time of their death, since you mentioned that you were scared for yourself (how you might feel) in that moment. In the seconds after my father passed away, I felt lifted out of my physical being by a natural flood of brain chemicals, just numbing enough so that I was not incapacitated by agonizing grief, but could function to support my mother, deal with all the necessary details and choices, take care of children and their needs, etc. My sister and I bathed and dressed my father. It was a way to take my time letting him go. It is amazing how our minds and bodies help us through these times. Gradually, the protective numbness lets go as we are able to cope with it.
Another update on my mom

My mom just had a turn for the worse now. Her lungs are filled with fluid. Right now it is clear which means it hasn't turned into pnemonia yet. However, if we don't get it out of there it will. Her doctor said to stop her tube feedings and no more little sips of water through the mouth for two days. He says that we want to dehydrate her somewhat to see if we can't get her lungs to dry up. There is no way of predicting however which way this is going to turn. My sister is flying in from Colorado tonight and my brothers are coming tomorrow from Dallas, Tx to be with her (just in case). I know that she will pass but I guess you never mentally get fully prepared for it. It is so hard. I would ask you guys to pray for a miracle that God would take this disease from her but since no one has ever suddenly been "healed" of ALS in ALS history then I ask that you guys pray for a peaceful passing for her with no pain and anxiety. She made me promise at the beginning of this disease that when she passes she doesn't want to "know" she is passing so to please make sure that she has plenty of morphine and adavan. I will do my best to keep that promise to her because I do not want her anxious or fearful.
Thanks for "listening".:cry:
Our thoughts are with you and your family today. I hope your best wishes for her are granted. Hugs, Cindy
jd, my prayers are with you, and your dear mom. I wish I knew what to tell you. Right now, I am praying that your siblings will get a chance to see your mom before something happens. Just be strong, it's going to be painful, but we as Cals know that there is no cure for this damn disease. I am sure He will give you comfort and strength, to make it through this painful ordeal. When my son was dying, I asked him to let go. I told him it was his time to go, and we understood. I kept telling him over and over that I loved him, and his pain would soon be over. I kept telling him, "Iam here, I am not leaving you. Please go peacefully. He is taking you Home, and we will meet again." He couldn't talk, but he would nod, and some tears were flowing down his face. The pain was enormous, undescribable. Let me tell you, go ahead and cry, it is a relief to do so. Cry your heart out, and out of nowhere you will feel this comfort sweeping over you. You will feel warm like when someone has their arms around you. When this happens, step aside from everyone else, and have a moment with your loved one. You will not be able to see your loved one, but you will be able to feel their presence. Reach out to our Father, He will touch you. God bless! Keep us posted. I am praying for a peaceful departure for your sweet mom!

my mom


My husband has als, and seems weaker. My story is my mom passed Dec 8 not from AlS, she was 90, what I want to say is I was always scared of Gary dyeing and ALS will win and it will take his life. I will get back on topic, I was with my mom when she died, had my special moments with her, and when they finally gave her some ativan, she was in peace, and I did not see her in pain then or stress, so please give your mom her ativan as it will calm her, they did give her morphine but passed before it would have taken affect. I am not a nurse but when it is Garys time we have already dicussed ativan and hydromorphone pills and his pain patches, and the doctor adding a morphine pump if Gary needs it, you want them comfortable and in peace, some dicussion with our doctor already, but I will be able to contact medical answers as it become closer to the end, when I need to, so I hope when Gary's Time come it is a peaceful as my mom.

All the best to your family, and may your mom be in peace and comfort.

Always live your life so you do not have to say you wish you would have.

Our keep you in my prayers.
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