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buf68

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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.
 

Al

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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.
 

buf68

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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.
 

hboyajian

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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.
 

CindyM

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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
 

Pearl

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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.
 

Al

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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
 

buf68

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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 :(
 

hboyajian

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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.
 

buf68

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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....
 

swmn

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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
 

buf68

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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.
 

Peg B

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Much Sympathy

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.
 

CindyM

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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
 

midwestgirl

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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.
 
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