Scared about my dad's breathing

[Monky]

Hi Everybody,

I just got some disturbing news from my brother about my dad... I'm just not sure how disturbing it is...

During the night my father had shortness of breath episodes. He has had this 4 times now. The nurse that comes in every day said she would talk to the neurologist.
His conclusion was that my father's respiratory functions are effected by ALS. He also said that changing the settings of the BIPAP will not help.
His medication is going to be changed to fluids because swallowing is becoming more and more difficult.
He is getting something to prevent mucus plugs.
My father does not want a ventilator.

Now I'm wondering... how long does he still have? Will he make it till Christmas or is this really the beginning of the end and do we need to make plans to come sooner than Christmas...

I can't tell you how hard it is to live so far away.

Does anyone have any experience in this stage of ALS?

Monique

 

[Danijela]

Dear Monique,

I have no direct experience with this kind of situation, but have heard of a number of pALS using Bi-pap 24/7 for a period of time (I know of somebody who has been on 24/7 Bi-pap for 1.5 years). Others will have views. Dani

 

[Rose554]

So sorry Monique that you must deal with this from afar! My Mom did not use her bipap 24/7. In September I convinced her she should wear it at least an hour a day. Since it bothered her to use at night she would use it during the day. Started out 1 hr a day, by time she passed Oct 20th she was using it 2 or 3 hours during the day. No vent, no feeding tube. Beginning of October I was crushing any of her pills, those I could not crush she wouldn't take. If your Dad's eating /drinking pattern has decreased also, in my opinion celebrating Christmas sooner rather than later would be wise.

 

[thelma313]

Monique, I do have experience with this stage of ALS. My dad was using his Bipap 24/7 for the last 3 months of his life and I often worried about when and how he was going to die and if I would be there for him so I really sympathize with your predicament. While I can't tell you how long your dad has, or even venture a guess, I can tell you that I too worried my dad was not going to make it until Christmas last year and he lived until March 25th. I know how strong the desire is, to know when the end will be, but even my dad's doctor was off by several days at the end. He lived past everyone's expectations and I know it's because he had such a strong will.

Ask your brother to share his observations with you. Try to find out what your dad's FVC is. There are some signs. My sister lives in another city and I saw how hard it was on her. She always asked me to share my predictions no matter how hard it was to say. Hang in there and get all the support you can.

Rosella

 

[Katie C]

Another thing to ask your brother is if your dad's breathing has become noisier. Our neuro did an excellent imitation of what Glen's breath would sound like closer to the end, and he was really accurate. And still, it's impossible to give you a real answer since each case is so different.

 

[DgtofTNfan]

Going through this with my father was very hard. I can't imagine how difficult it is to be so far away. As others have said, it is impossible to predict whether you should go to see him or wait until Christmas. I don't know how fast your Dad has progressed up until now?

My Dad had a severe choking spell, vomited and aspirated. He literally had a fever within about 8 hrs. He was admitted to the hospital. He developed pnemonia and was not able to beat it. He died within 2 weeks. I relate his experience because at the time he was admitted he had been walking around at the household level and feeding himself through his feeding tube. He was using the bipap about 8 hrs at night. While unable to speak or swallow, he was fairly independent. He had severe difficulty with managing his secretions, often having choking spells which for bulbar onset tends to be where the progression is faster.

Based soley only my experience, I would plan a visit sooner rather than later. My heart goes out to you for having to make this type of decision.

 

[Monky]

Thank you all very much to take the time to reply.

My father only uses the bipap while in bed during the night and when he is resting in bed during the day. He doesn't need it when he is sitting upright in his wheel chair. Well... 2 weeks ago when I was there he didn't... Don't know how that is now...

I'm not sure why the neurologist would say that it won't make a difference if he would change the settings on the bipap. Before they said that there was still plenty of room to adjust it because it was set so low. And now he says it won't make a difference. That is something I don't quite understand. In April his FVC was 62% then in June it was 51%. I don't know what it was in August and he didn't want to know what it was in October. But I'm pretty sure it has dropped. And these figures are when sitting up.

My father has been having swallowing problems for a while now. It has been slowly getting worse. He can still eat scrambled eggs and yogurt and soft fruits. The rest of his food he gets through the tube and now the medicine as well. And he can hardly speak. It is coming to the point where he needs the Dynavox. He has that but can't use it well, because of his neck problem. We are waiting for the eye gaze. That might come too late though... I'm very frustrated about how long it takes to get things done, I must tell you.

He also has small mucus plugs once in a while. He can usually get it loosened with the cough assist. It getting harder and harder though. We do know that there is a big risk that he can die because of that even before his respiratory fails.

I want to thank you all for sharing your experiences. I know it must be a difficult topic to talk about and I appreciate it very much. I am also very aware that each case is different. And each person is different as well. Unfortunately my father is not really a fighter the way my mother is. But people are the way they are, I guess.
This all might help me to maybe recognize signals so I can be there in time before...

Monique

 

[GRM2008]

Monique, look at it this way......if you go visit your Father soon, and he is still here later on, you can always see him again...if you decide to wait, and he passes, you will have a hard time dealing with that...i say go soon.........my mom passed away last Saturday, and we did not know the end was coming...i only live 2 hours away, and i am so glad i was with her last Sunday and we'd had a good day together........

 

[Katie C]

Excellent point from GRM.

 

[Monky]

Hi GRM,

I'm so sorry your mom died. It doesn't make it less sad, but the thought of her dying in her sleep is better than some of the other possibilities.

Thanks for putting my feet back on the ground... I guess it's just hard to let go...
I was with him for 2 weeks in October and I helped him a lot... It's hard for me to put trust back in the hands of the people that have been taking care of him before I came...

We did have a good time together, but I hope to see him one last time.
My sister will be with him during Thanksgivings for 2 weeks and I hope to come a few weeks after that. If he really takes a turn for the worst, I guess I could come sooner.

The nurse said she was more afraid of him dying because of a mucus plug than of the ALS just now.
We just don't know... I really hate this disease. I had never heard of it before... and I wish I never had...

Sorry, I just have all these fears and frustration inside me....

 

[LizT]

Monky- you dont ever need to say sorry for how you are feeling! This disease is very ugly and you are allowed to feel however you need to about it. You dont have to try to "be" a certain way- thats why this is a support group. We are here to support you, good or bad.
I truly hope things workout for the best for you and your dad.

 

[HezC]

Thank you for asking your question. I am new to this blog and found comfort in the thoughts that people shared as my Dad is now having more and more difficulty with his breathing. I live in the same community as my Dad and we, my husband, kids and I, are able to help out as much as we can. But, it still doesn't feel like enough. We are losing him. It is way too early. I need to find a way to make peace with this and enjoy the moments we have but I am just so damn sad that this is happening to someone so important in our lives.