My father was diagnosed three years ago with Bulbar ALS. He is in a wheelchair, can't really use his arms anymore. I'm just wondering how you really know when the end is coming. He sleeps a lot. He's constantly tired. He'll get an ok night's sleep, but then fall asleep in the middle of the day. His respirations are at 32 (i'm not sure what that means just that it's high). I'm just wondering how long he may have left. The nurses and stuff don't really want to say "oh it'll be this long", most likely because of the sporadic nature of the disease, but i'm looking for what other people have experienced with symptoms like that. If you need more info please tell me. Thank you.

Hi there. If your dad has bulbar symptoms and has had them for 3 years he is doing remarkably well. There isn't really any reliable way to tell how long any of us will hang on. I don't think anyone here would even attempt a guess. The nurses don't have any idea either so that is why they won't say anything. Sorry there are no good answers for you.
AL.

i figured as much. It's just getting very hard. My husband and I live with my mom and dad to try to help. His breathing was very shallow and almost like hyperventilating today. Sometimes lately he has bad days like this and then the next will be a little better....i'm just starting to get scared and just wondered what kind of symptoms other people noticed of their family members towards the end, that's all. In my heart I can feel it coming.

My heart goes out to you, as I am sure it is extremely difficult seeing your father's health decline. While I cannot address the mysteries of life and time on this Earth, I certainly understand your concern about your father's shallow breathing. Is he already on a bi-pap machine for breathing assistance? Also, has he been tested for blood gas levels, both oxygen and carbon dioxide? A build up of carbon dioxide can indicate the onset of severe breathing difficulties. You probably already know your father's wishes regarding further intervention (ie. potential vent), but in case you do not, this would be a critical conversation to have with him.
My father was fatigued so often in the months before he died, it was hard to tell when the level of fatigue had risen to more severe levels. He tried so hard to keep on going, and did not always let us know the depth of his exhaustion. When he was very close to the end, my mother says he would not respond to her as much, and sometimes she did not know if he had heard her.

Good morning buf68, I hope your dad is a little more comfortable today. The advice you got form hboyajian is right on target. The doctor may need to see your dad to evaluate the settings on his bi-pap.

As for wondering what is in his future and yours, I sympathize. I am also helping my Mom through her final stages of Alzheimer's and sometimes you almost want them to be near the end of their misery. In my case, there is family to notify from out of state and if possible I'd want to give them a "head's up." But these things are out of our hands. What happens will take place on its own timetable. regards, Cindy

Three years is a long time for bulbar onset of ALS, from what I understand.

Do you know what his lung capacity is at the moment? From what I have heard, anything below 35% is getting into a dangerous level where mechanical ventilation would be necessary.

I'm assuming he is using BiPap, but you didn't mention it...is he?

If he is sleeping through the night without waking with restlessness, he may still be doing pretty well breathing wise.

As far as "end of life" signs - sometimes you will notice irregular breathing (starts, stops, quick breaths, no breaths, ect....) this can go on for awhile - hours, days?

Also, for end of life (and this is not specific to ALS...it's end of life stuff for many illnesses/conditions) you may notice little urine output, not wanting food/drink, sleeping a lot. It's possible that they may run a slight fever - sweat, not sweat, hot then cold (indicating that their temperature regulation may be out of wack). Finger tips may look blueish in color (this could be the case for ALS patients sooner than other patients, because of the hypoxia issue - lack of oxygen). Heart rate may be slower or irregular.

The nursing staff won't give you a time table because honestly they don't know. I've worked hospice before and when patients looked really bad to me, all I would say is, "There is no way for me to tell, it could be hours or weeks , but it doesn't look good."

If the patient isn't drinking or obtaining fluids in some way, it probably would be about 7 days or less. Same if the kidneys shut down (no urine output).

I hope this helps in some way. Very sorry for your family.

Hi buf. Here is a Hospice site that tells in a very caring but frank way the final stages and what you may see to give you an idea of the way things work near the end. I hope you don't find it upsetting.AL.
http://www.hospicenet.org/html/preparing_for.html

thanks for everyone's answers....
Dad's condition has worsened. Today he did NOT get out of bed at all (very odd for him)...his breathing is somewhat irregular, he's using his bipap almost all day. He had a fever this morning which scared us. The hospice nurse said based on her experience it probably won't be long...maybe 7-10 days? But she has said that it's hard to tell with this disease. He also hasn't urinated in the past 24 hours. So now we are starting to worry a bit more. He stares off into space, not really focusing on anyone...but he still acknowledges people sometimes when they come into the room, especially his friends. He is still aware of what's going on most of the time I guess b/c he can respond to us. We are preparing for the worst at this point. 3 years IS a long time for Bulbar ALS. He's such a fighter. We were asked if there is anything he might be hanging on for, and his sister is coming up this weekend from pheonix (first time in 9 mos) saturday, and then his birthday is the 21st of may, and my parents anniversary is june 4th, so there is a number of things he could be hanging on for. We're not real sure. Over the weekend he didn't sleep very well, often waking up and coughing in the middle of the night. Last night he actually slept through the night (my mom gives praise to god for that...she thinks it's b/c our church has special prayer for him last night at bible study). We're not sure when exactly this is going to happen, but it does FEEL soon, and it doesn't feel like an episode that he's going to pull out of :(

Dear Buf68, I am so sorry. I know how incredibly painful this is. I hope that everyone can get there to see him, and that the time you have left together is as good as it can be under the circumstances. You and your family are in my prayers tonight. Sincerely, Holly.

Thanks holly. Dad's been resting somewhat comfortably the last few days. He hasn't gotten out of bed since tuesday night. Mom is somewhat hoping that he'll just go in his sleep, while I am deathly afraid of it. I'm so scared that she'll come downstiars and wake me up saying he's gone. We are still making preparations for "just in case'. My aunt (his sister) was one of many people who made it out here yesterday to see him (she lives a long ways away and finally flew in). Now we are trying to get through mother's day....all the while focused on my father. It's amazing to see how many people are coming over, and how they are all affected so much by this man. We still pray for a healing, but yeah, preparing for the worst....

buf68 - I want to offer a suggestion that your family and dad may want to consider. About 5 yr.s ago I said good bye in a special way to a very dear friend who was in the final stages of dying. His wife is a very spiritual person who decided to give her husband a "good bye prayer gathering" where the inner circle of family and close friends (6 total) gathered with roger talking, praying and sharing memories. We all got to share w/ roger what we cherished as memories. It was a special time where every individual said good bye and let him know it was OK to let go - he found peace in knowing that everyone he loved was there and gave him permission, love and support.
We could see Roger relax and find peace as the evening closed. Roger passed away late that night in his sleep. We all were very sad that he was gone - but we were all releived that we were able to say goodbye in a special way. Just a suggestion. God be with your whole family

sadly, my father passed away may 15th at approx 1:45am. The end was extraordinarily difficult. That day he experienced something that will remain in my head for my lifetime. He could not breathe and panicked....His face was grey and purple. It was so incredibly scary. We got him calmed down, but then his breath was very labored for the remainder of the night. We called hospice to have him sedated further so he wouldn't have to suffer another episode. The hospice nurse arrived and did NOTHING for about 1.5 hours (even though our regular nurse said he came prepared and COULD have given him at the least valium immediately). He finally gave a shot of valium and morphine into his peg tube....and then proceeded to explain to us that the meds through his tube probably wouldn't be adsorbed due to his digestive tract slowing/shutting down (don't ask me why then he didn't give a SHOT of morphine or something for the pain that was written all over my father's face). He was then authorized by phone to give another shot of valium, and if that didn't work then give phenobarbitol...but he did neither. He ordered an IV sedative, however, it took the pharmacy an hour to prepare, and the pharmacy was 1.5 hours away (the meds got there just after my father passed).....eventually my dad calmed down and seemed to be asleep (maybe a coma, not sure)...but his breathing remained extremely labored. He had a fever of 101.3, which the nurse did nothing about. The fever seemed to break and my father felt cold...and then looked very white. We got the nurse, my mother, and my husband and then my father started having apnea (no breathing for 30sec-1min, then a breath)....he took his final breath and then his heartbeat still pounded for 10-15 more minutes...and then he was gone....one week short of his 45th birthday.

This is the absolute hardest thing I've ever had to death with in my short 23 years on this earth. My father and I were extremely close my whole life. It's sad that everyone is so concerned about my mother and my 10 year old sister, but everyone feels like i'm ok, or that i'll be strong. I feel so lost and alone without him. I almost feel like people don't think I have felt as large of a loss as my mother or my sister....i don't understand that....

The funeral was beautiful, and the gravesite was the hardest part of the day. He had looked SOOOOO incredibly white that night, it was very scary...i'm just glad they put makeup on people in the casket. I have always heard that death in ALS is peaceful, but this seemed anything butt :(.....I just thought I'd share for others to prepare.

Dear buf68

I am so sorry to hear about you and the loss of your Dad. Our youngest sister was killed when she was 22 and I was 28. That left 4 sisters and one brother and our parents. It was so hard to help each other as we all felt so incredibly heart broken. We all had to turn to our personal friends for awhile until we could handle each others' grief.

No one can really know your personal grief and I am sure you also grieve for your mom and sister as well as your father. You are very young and this is so incredibly painful. The best I can do is offer you prayers and support and assurance you will find peace in the loving memories of your father. God Bless you.

Dear buf68. I am so sorry for the loss of your Dad. I think i is wonderful that you and other is your family were able to be at his side during his last hours. You will never regret what you have done for him. It sounds like your family thinks you are the stronger amoung them. An important role, but a lonely one. Don't forget to take extra care of yourself as you grieve the loss of your Dad and don't hesitate to reach out if you need to! regards, Cindy

Dear Buf68
I am so sorry for the loss of your father, and all the tramatic events of the evening. I cried for you and your family as I was reading your post. Hospice mission is to keep patients comfortable in their last days, hours, minutes. Most hospice's offer bereavement services which may be helpful for you. If not, I'm sure they could refer you to a bereavement support group, or perhaps through your church.
I will be praying for you and your family throught this difficult time.

Dear Buf68, I am so sorry about this incredible loss in your life. The pain is huge right now, and for a long time you may re-live the painful events around his death, as his life meant so much to you. I also experienced this (as well as some insensitive medical personnel, though thankfully there were really helpful ones too). In time, the memories of the more difficult physical and psychological aspects of my father's passing have faded for me while the precious moments of love that we shared close to the end have remained strong in my memory. At first, I could hardly stand the anger and confusion I felt about some of the things that happened at the hospital. I found a counselor to talk to about it, which helped me considerably. You may want to do this or find a support group. I sincerely hope you have the time in your life to grieve and that you can find support from friends, and eventually your family as well when they are able.
I find that the grieving has been different than I thought. At first, I was so numb that I couldn't cry or seem to feel anything but emptiness and a huge hole in my heart. If this is happening for you, other people may misinterpret it as "strength". Then after a few weeks I went through episodes of crying and shaking so hard, waking up in the night. Whatever happens for you, be good to yourself and let yourself experience this bottomless grief however you need to. Your dad's love surrounds you even now. Sincerely, Holly

I am very sorry for your loss. Condolences to you and the rest of your family.

Liz

I will keep you and your family in my prayers.

I am so sorry for your loss. The whole time i was reading your post i was crying for you but also for me because i can see me in the same place soon. You and your family are in thoughts and prayers. Stay strong and God will help you through this..My heart goes out to you.

God Bless you

I am so sorry about the death of your father. Thank you for sharing what must have been an incredibly hard experience for you. Know that you are in many peoples prayers. Sincerely, Shelly

Thanks everyone for your support and kind words and prayers. Today our regular hospice nurse and social worker came out to visit and chat about the experience. We posed our concerns to them and they too feel how we feel about some issues. They are going to talk to the nurse supervisor and she'll probably call and chat with us. We are hoping that at the very least the on call nurse will be chastized or will have to answer for the fact that when he arrived he did nothing for 1.5 hours, and then was authorized over the phone to do more than he finally did. His demenor was also very lacking with our family. So hopefully he will have to answer for that somehow...if only to apologize to us.

Dear Buf68 - I am glad your family is having this meeting. It would be nice to get some sort fo closure for this painful experience and give important feedback to the staff who seem insensitive. Let us know how it goes! Cindy

I'm so sorry you had to go through your fathers death in this manner. I pray God will give you strength and peace in the midst of it all.

A thought for others who will experience death with a family member.

My wife's mother died of cancer 2 years ago. She suffered such pain beyond description. The doctors had told us she would not last long so we gathered the family at her bedside. She was sedated to try to control the pain and make her as comfortable as possible.

We had all been praying for her, and weeping knowing what was coming for several hours. Finally her last grandson arrived, and we all prayed and said our goodbye's to her and told her it was ok for her to let go. We hated to see her leave this world but knew as a Christian she was headed for a better place with no pain or suffering.

As my wife's brother layed his hand on her shoulder and we all were crying, we each told her it was alright to go now. She had her family by her side and there was an amazing moment when we all just knew the end was here. It was time. Then she quietly passed away.

We had such mixed emotions. Glad that she finally had relief from all the pain and suffering, but sad at seeing her go. But, we were blessed, because it was like she waited for us all to be there, to say goodbye, and tell her it was alright to let go.

I know nothing can ease the pain of losing a loved one. All I can offer is a prayer for peace and for God to comfort you at this time.

God Bless
Capt AL

Thank you so much for your kind words. Everyone needs encouraging from time to time and I appreciate it very much.
God Bless
Capt AL

as i sit and read these posts about your father's dying, and the sweet posts by members of this wonderful forum, i, too, am crying. my husband has had als - limb/onset for only a year and a half, but his als dr. has already told us that he only has a few months to live due to his respiratory situation increasing at a rapid and frightening pace.

it was upsetting to read about the hospice nurse's uncaring and negligent care. i am so afraid the end is coming closer for my husband, that i am on pins and needles all the time now. i buried my first husband 12 years ago due to lukemia. we had home health, but not hospice. no one had educated me about the signs of his coming death, and although he had acute lukemia for 6 years, i was in denial and completely unprepared.

two days before his death i called 911 and he went to the hosp. but all they could do was keep him comfortable. he was septic 100%, urinary infection, and double pneumonia, and they gave him strong antibiotics through his iv. and yet, his dr. told me when the antibiotics got rid of the infection, he could go home. this dr. knew he was dying and would never go home, but was not honest with me, and his death took me unprepared. on monday before his death on tues. morning, the nurse told me he was hanging on bec. he didn't want to leave me crying and upset, so i held his hand and told him i would be ok, and to go and be with his Lord. he died the next morning.

my husband and i live alone, and i search this forum for knowledge of what i should be watching for. are we ever prepared???? no - no matter how much knowledge we have.

i love each and every one of you, and buf68, i am truly sorry for what that nurse put you all through.

jackiemax

I know it may not be much comfort, but from talking with people on the forum and AL, our great sage of wisdom, (not me, Al the moderator) it seems most of us with ALS die in our sleep. I'm sure there are exceptions to everything and surely no hard fast rule as mixed up as this ALS thing is.

I think a lot of it has to do with our will to live, fight, and not give up no matter what we are facing. I'm a stubborn old cuss myself and kind of like this thing called life. Yes I know there is a better place for me in heaven when I leave this body, but life is so interesting. You never know from one day to the next what some crazy politician or dummy on TV is going to say that just makes you laugh till you cry. And then there are the days when you cry till you laugh. But one thing we all will share in LIFE is we are ALL going to die someday. Thank God that He has given us the time to prepare ourselves as well as our loved ones for it before it comes. What a blessing. TIME,,,,,Try to use it wisely.

Life is special. God made it that way, I believe just to keep us from being bored. I see so much life and humor in my 15 grandchildren, that I fight to stay around as long as possible, just to watch them, enjoy them, and help them. Load them up on sugar and sweets and send them back home to my kids to face the action. Ha Ha. Pay back kids.

You see in the past I died on the hospital table at least twice and once had an out of the body experience. (Very interesting) So in a way, Been there Done That, Not worried anymore.

Sorry, as usual I got sidetracked. I guess these are just some thoughts I have I been having myself, about why I never give up, why I trust that God knows what is best, and why...........why, why, :-D

Jackie we never really know the exact time God will call us home. I wish I could give you some better advice. About all I can say is look to God for the peace you seek and for the strength to face what we all know is coming. I will pray that God will grant you peace in the midst of the storm and most of all comfort, for He is the great Comforter.

God Bless
Capt AL

my father passed today ,3mts after dx they thought it was a stroke.by the time of dx he had lost more than 50% of his body wieght,in hospital 8 days ,refused the peg, he had given up after mom died 2yrs ago. broken heart!!!

I'm so sorry to hear about your father passing away. I pray for peace and strength for you during this time.
May God Bless
Capt AL

I am sorry for your loss, d. Shaw. You will be very busy teh next few days but be sure to stop in if you need us! Cindy