Bad days

[starente15]

We pretty much only have bad days and worse days at this point. My dad doesn't want to take "too much" morphine even though we've been told he's on the lowest dose and often takes only half of that. Today he's gasping for air a lot and having choking fits when not on the trilogy. He was prescribed extended release morphine but had a bad reaction twice and can't take it.

I'm terrified he's going to be in constant distress until the end.

 

[Green Queen]

Oh star, how tough for you all particularly your dad. As if he isn't going through enough but reacting to medication is just not fair.
Thinking of you heaps.
God bless, Janelle x

 

[starente15]

Today is my bithday. He said Happy Birthday when he first woke up now he's unable to speak again.

 

[Green Queen]

Oh star...that's beautiful. You are probably thinking how sad, but to me it's your dad working on what's the most important thing to say today.
You are blessed to have a dad that obviously loves you so.
It's a terrible thing you are dealing with, but I do hope you can find some happiness in today, as your dad wished.
Happy birthday!
God bless, Janelle x

 

[lgelb]

Star, can you try to help him use the Trilogy more? It is OK to tell him he seems more comfortable on it, and that makes you comfortable, too, and that you will help him fix whatever's not comfortable about it.

I won't say, "happy birthday," exactly, but through your dad's eyes, he is happy that you are his daughter, that he has seen you grow up, and that you are with him today. So I will be happy for him -- and you -- for that.

Best,
Laurie

 

[starente15]

Thank you Lori. Yes, we got him back to bed and on the trilogy. He's most peaceful when he's lying there. I told him I cAn see the distress he's in and want to help. I've pleaded with him to take the meds so he'd be comfortable enough to watch tv and enjoy a show. Right now he's settled down but we've called hospice twice. I can't believe I'm watching this at times.

 

[cheerleader]

Laurie said it so beautifully. TG he still sees the blessings in his life, and you are one of the biggest. Donna

 

[Nikki J]

Hoping for comfort for all of you. You are doing a great job

 

[DreamsEnd]

Star, I understand how difficult it is to watch him struggle to breathe, I'm doing that right now- watching him struggle even w/bipap. Your dad does love you and you are awesome to let him decide what he wants.

Big hugs,
Sherry

 

[notBrad]

Oh star...that's beautiful. You are probably thinking how sad, but to me it's your dad working on what's the most important thing to say today.
You are blessed to have a dad that obviously loves you so.
It's a terrible thing you are dealing with, but I do hope you can find some happiness in today, as your dad wished.
Happy birthday!
God bless, Janelle x

Beautifully put Janelle!

Our hearts go out to you Star,
Brad & Vicky

 

[T.Low]

As a father with ALS, and after just watching my best pALS friend go through this last month, i can tell you for certain that all the ALS BS (or AL(B)S as we call it in the T.Low household) is no match for a father's love for his daughter. He can endure anything as long as he can see your beautiful face.

Religion aside, once it gets to the point where ALS has stripped everything it can from a man, a man's love for his daughter stands strong and untarnished, actually stronger than ever, in defiance against this evil disease. When the time comes and he takes his last breath, no matter what outword signs of struggle there may be, inside he is proud and at peace knowing he raised a wonderful beautiful daughter. Please find some peace in that.

 

[scaredwifetx]

Star, everyone can see that there is a lot of love between the two of you. Hold on to these precious moments and know that the most important thing to your father is your being by his side. It is so tough to watch the man that held you, raised you with strength and dignity losing strength each day. T. Low said it all. He will leave this evil disease and pass on. When that time comes he will go in peace knowing that he was loved by the most incredible daughter a man could ask for. Thoughts are with you.

 

[starente15]

Thank you for your kind words everyone.

Sherry-how are you dealing with the gasping while on the bipap? We have that too and it worries me.

 

[hjlindley]

Check with the respiratory therapist. I don't tolerate morphine at all and she told me will that there is now low dose fentanyl that will also combat air hunger. Morphine makes me it's so badly I can scratch my skin off . Good luck, this disease is a true monster. Go to sleep
point

 

[lgelb]

Sherry & Star, your PALS should be able to tell you, even via nods/shakes, whether the IPAP is too high ("getting too much air"), EPAP too high ("hard to breathe against the air"), IPAP too low ("not getting enough air").

PS min (minimum difference between IPAP and EPAP) should be at least 6 for most PALS in late stages, EPAP flat set or max 4 for the most part, unless there is a pre-existing obstruction. I have found many PALS have PS min set too low, EPAP too high or both. IPAP max is often too high. Lungs that have lost capacity can't handle huge blasts of air, and that just makes breathlessness worse. Some of you have target volumes that are set too high as well, resulting in IPAPs you can't handle. Most PALS do _not_ need a backup rate, which can also be exhausting if set too high. Backup rates are often set in lieu of correct settings, in a CYA spirit, I think.There are also settings to make breaths longer, shorter, faster and slower.

As a reminder, to access Trilogy settings if you are locked out, when the machine is off, press and hold the alarm silence button along with the down arrow key for a few seconds. (1) Then, to enable access to settings later while the machine is on, go to Options/Menu Access/Full/OK. (2) Then go to Settings and Alarms to adjust IPAP, etc. I am happy to help anyone make appropriate adjustments to a Trilogy or other machine.