insight on what may be next

[dserp]

Hello all

My dad is the one with als and he is beginning to do things that I haven't noticed him doing alot like sleeping all the time and he has cold and hot flashes all of the time.I have also noticed that his feet and hands stay ice cold most of the time. He also make gurgling sounds all the time even when he is asleep. He complains alot about not being able to breathe well and he is scared to lay down at night. He is not scared of the thought of death, but seems to be scared of choking to death. I just don't know what I can do to help him or to comfort him. His largest fear is that he will choke to death and that my mom will find him back in his bed and be here by herself I know there is no way to predict what is to come but just wondering if there are people out there who have been through similar situations any insight would be great....

 

[Nikki J]

Not sure about the gurgling? Could you get his lungs checked that he does not have pneumonia? My sense from your posts is he will not want bipap to support breathing? Hospice would probably be a support to all of you and could help with medicine if needed. A PALS should not have to die in respiratory distress though many do go peacefully in their sleep which is something to be wished for I think.

 

[patrick123]

Get your dad to an ALS clinic asap. He may need a BiPap for sleeping. For cold hands and feet is the new normal. As the muscle atrophies you can feel very cold.

Patrick

 

[affected]

There are a few things I would say about what is possibly happening here.

Firstly I would want him to be checked by a doctor for pneumonia, we need to rule that out.

If there is no pneumonia then there are a few things I immediately think about with what you have described.

CO2 retention symptoms/breathing difficulties that I saw in my husband: sleeping a lot and tired when awake, cold extremities and unable to regulate his own body temperature, cannot breathe laying down and even reclining could only go back so far before affecting breathing.

This is why pneumonia needs to be ruled out so that it can be decided whether the problem is his declining breathing and the actions to take on this. These actions could be bipap (which I think I remember he doesn't want too), posture, morphine and clonazepam.

The gurgling sound I am not sure but it could be postural too if pneumonia is ruled out. With bulbar effects some really weird stuff can happen with the throat and voice box as these structures become so floppy. If he is particularly making noises when he is laying, then he shouldn't be laying down at all.

I hope this helps, I know it's such an awful feeling that you can't truly solve it for him!

 

[dserp]

He uses a bi-pap partially at night he request to take off sometimes because he says it drys his mouth out. The noise he makes sounds to me like when someone is congested and can normally cough it up but because of this he can not...iam going to get him to the doctor to make sure it is not phemonia.

 

[gooseberry]

He may have mucus/phlegm that is stuck in his airway. Does he have a cough assist to use? That would help move things. Also, lots of fluids.

 

[affected]

I'm glad you are going to get him checked.

Normally with pneumonia there is a 'rattle or popping' that is only heard with a stethoscope because it is happening down in the lower lungs.

Often noises you can hear are likely caused by an upper respiratory issue which could be an infection but could also just be mucous problems and the cough assist would help either.

Tell the doctor that he won't use the bipap all night and why so they can try and solve this so that he can use it all night. Laurie may have some tips on that one too.

 

[4tloml]

Does he have a humidifier for his bipap?

 

[kingsaustin]

My husband has had the same type of symptoms for some time now. The fear of sleeping at night was a huge challenge for us and we finally deduced that it was because he feared if he fell asleep he wouldn't wake up in the morning, fear of dying during the night. That said, his anxiety would get the best of him causing him to focus on his inability to move, which exasperated the anxiety, which caused him to feel extreme heat to the point of sweating and then extreme cold. His hands and feet are always cold, we finally wised up and have him wear his hunting gloves and sherpa footies (for the majority of the day). That seems to help somewhat.

He makes a lot of noises but as the others stated in their post - the best thing is to have your dad checked out to make certain he does not have pneumonia is paramount. As for my husband making those gurgling noises (like your dad), our experience has been it's caused due to upper respiratory and phlegm caught in his throat area which he can't cough up. My husband has a trach so I am able to (for the most part) suction him with a suction machine to get the junk out of his throat and lungs and use saline drops to help thin out the mucus. He's been on a ventilator mainly at night since May of last year. I also give him nebulizer treatments at minimum twice a day (should be 4x a day but with his sleeping and eating habits it's a challenge to get 4 in due to the time needed between them). I made the mistake of giving him two back to back one night and that made for a VERY long night as there are side effects, i.e., anxiety (agghhh). He also uses the cough assist. We make it a point to have him at no less than a 30 to 40 degree angle which helps him breathe easier.

We have always been told that as long as he's on the vent his breathing will continue as the machine will breathe for him. However, he also has issues with his heart and we were told (by hospice) that unfortunately there isn't much we can do about his heart condition.

 

[tripete]

I also make a lot of noises from my throat when I lay down. The noise will change from side to side and with elevation. I found on different post that a lot of people take Mucinex to help with phlegm break up. I now take it before I go to bed and then again when I wake up in the middle of the night and it helps.

Unfortunately I think fear and anxiety are part of what we now live with. I admire his concern for his wife. She may need to speak with him about her feelings and what she needs from him - namely for him to Sleep.

 

[affected]

YES fear of dying in his sleep - Chris had that for a very long time!

 

[Diane H]

Fear of dying in their sleep? I can't think of a better, more peaceful way to go!

 

[affected]

I know right Diane!

I felt the same, but I should say that Chris had a huge fear of dying full stop.

I always felt it would be kinder for him to just not wake up one morning than to continue deteriorating until he knew he had reached a stage of actively dying. Once he reached that stage and was on lots of meds, he actually became very calm and lost his fear of dying.