mum won't stop choking hours on end

[subo]

Hello,

I wondered if anyone could help with some advice. My mum has bulbar palsy onset als and has horrendous choking/coughing/gagging now.

She used to get the odd episode, but lately it doesn't stop, it's saliva going up and down and gurgling, she coughs but nothing much comes into her mouth. It's a viscious cycle of it going up and down. Sometimes saliva comes out of her nose.

Last time it lasted 12 hours so we went to the hospital. They said there was nothing they could do, they checked her lungs were clear and sent her home in the same state.

She has been choking and gurgling with every breath for hours on end now, for 48 hours. She is exhausted. The neuro gave us lorazepam for when it happens, but it seems ineffective, Just makes her very floppy, sleepy, but she carries on through the haze coughing, gasping and gagging.

I am at my wits end now. I just don't know what to do. The doctors are clueless about als here, if i call one out they will send her to hospital and they won't know what to do.

last time at hospital she tried a suction thing, but it didn't help, as the saliva is behind her throat. The neuro also menitoned a cough assist machine but she said she didn't need one.

has anyone else been through this? i don't know what to do

Thanks for listening xx

 

[joelc]

A lot of us have had similar problems. The only way to deal with this is to suction, it is uncomfortable at first because the Yankauer suction tube has to be put down her throat to get the secretions. A cough assist machine is also a big help. Yes, it is a hard problem to deal with.

 

[Jeannie]

I am so sorry you are having to deal with this. I know we have the same problem with my MIL throughout the day. It is horrible and frightning. We do have a cough assist machine but she refuses to let them us it Maybe try putting her head at an angle where the saliva could run out of her mouth more freely than the back of her throat... It is so worrisome and I feel for you
In friendship
Jeannie

 

[BarryG]

I go through this every day and like Joel said, the only help for it is to be able to suck it out with a suction machine. Make sure that she gets lots of fluids and if the air is dry make sure you have a humidifier so her mouth and throat don't dry out too much. Because my mouth hangs open all the time it is really easy to have a dry mouth and throat resulting in the thick gagging goo that has to be sucked out.

 

[flower]

I am so sorry you have this, does she g-tube or is she trying to eat ? But the suction and cough assist does help . I had the same problem,it is very scarey . I now have trache , it is less of a problem. It takes while to get use to cough assist but if you decide thats better than choking it really does help. I hope and pray she feels better.

 

[Jellycat]

So sorry you are going through this. It's very hard. I agree with what the others have said about cough assist or suction machines. Just recently my mum (bulbar onset also) had suction with a softer smaller tube than a yankeur. It was able to go much further down into the throat. She said it wasn't pleasant but it helped a bit.

On the ideas front I'm wondering if your neuro has given your mum anything to dry up the saliva? Amytriptylene / scopoderm patches / botox /radiation treatment. Don't know if the hospice system works the same in Somerset as here but maybe they could give you some support either by advice or a visit from one of their doctors.

Thinking of you. Hang in there.