CALS Roll Call Continued

[affected]

@Ernie I'm so glad she is coming out the other side of that virus. Just giving easy to digest foods for 24 hours is smart now as you always feel awfully wrung out after these.

@Mary wow great news, sleeping!!!!!! How is the new night carer working out?

 

[lgelb]

Trazodone is a daily med where you just want to keep 24h apart dosing for a constant level. Lorazepam is short-acting (as is the "non-CR" Ambien, though less so). So if you are spacing out the trazodone, you can give any short-acting drug any time, though you still want to be careful about mixing sedatives in the same time slot (like Ambien + lorazepam) if she is not at the end of life.

 

[MVFinVA]

Well so much for the good nights sleep. All of a sudden Dave is dealing with secretions and choking. It hasn't been a problem up until now. Tonight it struck with a vengeance. Hospice came out and gave him Levsin. The choking subsided and then two hours later it hit again. During the choking episodes his O2 sat dropped to 90 and pulse went up to 120. It has subsided now, but he isn't going to sleep.

Of all the things we have had to deal with thus far I would say this was the worst for me, and probably him too, but with the FTD he can no longer communicate it. I felt so helpless. I tried to get him in a position to help. I used the cough assist. I prayed and I cried. And while it may be premature, I told him that when he was ready to go it was okay. I would be okay and he doesn't have to stay for me. Just the desperate look in his eyes made me want him to know it was okay with me.

I HATE THIS DISEASE!!

Mary

 

[lgelb]

Mary, I know he's on part-time BiPAP. Is he using it during the choking? It can help if set right (e.g. no backup rate). Also, try warm papaya or pineapple juice...some have success with Alka-Seltzer.

 

[affected]

That's so scary Mary, I'm so sorry. I know you are hoping for a nice xmas time with family coming and it seems like everything ALS is conspiring against you. With the FTD it must feel so isolating

 

[wishmobbing]

Mary, choking fits are the worst! My PALS had only a couple episodes with food, felt like red alert for hours. Hope you find something that helps him quickly.

 

[Chincoteaguer]

Thanks Mary;

We are now using morphine so Sibyl is very comfortable.

We are also using Lorazepam.

Ernie

 

[MVFinVA]

Laurie - Dave's been on the BiPAP 24/7 since the late summer. Doesn't go off at all now. Until a couple of weeks ago he'd go off to go the the bathroom ( can still walk) but his O2 began dropping precipitously, so not anymore. Some of that was probably positional. He isn't on a Trilogy, but a Dream Station S/T. He uses the nasal pillows during the day and the full face mask at night, although I kept him on the nasal pillows during the coughing. The IPAP is 12, EPAP 4, rate 10.

How much pineapple juice at a time and how often should I give it?

Tillie- Yes, the hope was for a nice, peaceful, family Christmas. The girls know their dad's condition is worse, but I don't think they really know since they haven't been here for awhile. I will be glad when they get here. Hope to be calmer than I was last night. It won't help them, or Dave, if I'm freaked out. Because of the FTD, last night was the first time in this whole journey that I really felt Dave was in distress mentally. Even when his O2 fell very low on occasion, he never looked like he did last night.

I know nobody knows how long Dave has, but my intuition is not long. I just wonder how much he understands/remembers that the girls are coming in 3 days. Is that important to him? Outwardly it seems not, but who knows.

Mary

 

[Narrowminded]

Mary - very huge hugs. This part of what you are going through is not fun, it’s terrible. It’s ok for you to be scared out of your mind, as long as you keep enough of your head to help him. Just keep reminding him the girls are coming. With FTD, what you say may be gone the next second. If he does know it inside the reminder won’t hurt.

Hang on tight, and I know I am here praying for you.

Hugs

 

[lgelb]

Mary,

That's right -- I knew about your BiPAP, I'm sorry. My MIL died yesterday -- I'm a little frazzled.

When he is choking, you could try increasing the IPAP to 14 with the nasal mask. Depending on which muscles are weakest, you can tell if that is better or worse. Some people near the end than the beginning need lower pressures, however, because their muscles cannot move as much air, so if increasing it is the wrong direction, next I would try decreasing it overall to 10 as maintaining too high a pressure can trigger spasms. You will want to keep the EPAP at 4.

And as I say, I would try dropping the backup rate (10) down to zero so the machine does not interfere with the coughing, which can also make it worse. Let me know if you need help adjusting anything.

As for the pineapple juice, there's no set amount, but hydration is only a good thing when it comes to mucus/thick saliva. I would try every few hours.

 

[affected]

Very sorry for your loss Laurie xxx

 

[lgelb]

Thank you, Tillie.

 

[MVFinVA]

Laurie, I'm sorry for your loss!
I watched today carefully and kept up with the levsin every 4 hours. He was fine until this evening when he started burping, and making lots of mouth noises. Then he had a lot of saliva. I suctioned him and sat him up straight and that seemed to help. But he also makes rhythmic noises that sound like hiccups without the power behind them. Not sure what is happening, it's confusing. Wondering if the hiccups are diaphragm twitching/spasms. And why does he start burping in the evening? It's a mystery.
Mary

 

[Katalin]

Laurie I'm very sorry for your loss. Condolences to you and your family and friends.

Kathy

 

[lgelb]

Thank you for the kind words, ladies.

Mary, the esophagus is another possible source of the burping/noises. In ALS, sometimes the passageways stop opening and closing normally, so air, food and saliva can end up where they shouldn't be.

Papaya juice as well as pineapple juice may help settle the air that often drives the rest of the symptoms, or Alka-Seltzer or a liquid antacid (some come as liquids).