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LeelaaB

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Hello everyone. This is all very new to me even though I feel as though I am getting a crash course in ALS care. My beautiful mother was diagnosed with ALS in October. She is 77 and lives with me. Her progression has been so fast I am having a hard time keeping up with all she needs. I have gotten her to an ALS clinic, bought her walkers, wheelchair, commode, hospital bed, stair chair, the hospital bed is coming this week, the PEG will go in tomorrow, I have quit my job and spend about 18 hours a day sitting with her.

My issue is that she is refusing to use the trilogy which she so desperately needs. She is showing all the signs of respiratory failure. She sleeps about 18-20 hours a day, she is delirious and confused most of the time, her fingernails and lips are turning blue yet she pushes the mask off her face and refuses to keep it on.

I don’t feel right forcing her to where it if it’s not what she wants. I told her she’ll die without it and she still says no, yet she wants to go to the hospital for the PEG. Am I doing the right thing by not forcing her to use it?. Have I done everything I can?

Thank you for listening, I really needed a place to vent and this seemed like the most appropriate place.
 

lgelb

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A sad welcome, Leelaa.

I would be concerned that if the Trilogy isn't making your mom feel more comfortable than uncomfortable, she either has a mask that's not right for her and/or the machine is not set for her current needs. For example, if there is too much pressure, there is no way she will want it on. Is it a nasal or full face mask?

Like you, I wouldn't see much point in a PEG given her condition, which would probably mean the radiologist would refuse to do the RIG anyway. The breathing needs to be addressed first. If you don't want to adjust the machine yourself, which I could help you with, I would call an RT with your equipment supplier and insist s/he come to the house to adjust the machine and/or swap masks.

Best,
Laurie
 

Herdaughter

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I am soooooo sorry. Definitely contact someone about the breathing of you don’t want to do it yourself. My mom is doing the same type of stuff. Doesn’t use the AVAP but is doing Radicava even tho the neurologist said that it’s the AVAP that’s going to give her the most benefit.

I’m so sorry you are having to struggle. This disease is an SOB!
 

LeelaaB

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It’s her anxiety that is the problem. The only way to get her to use the machine is to sedate her. Since the hospital we go to specialized in ALS, the GI will do the PEG without anesthesia and then keep her overnight. I truly fear she won’t make it through the night but that may just be my exhaustion from this whole situation.

Thank you so much for responding so quickly. I don’t know what I would have done these last few weeks without all of the information I have read on this site. It’s been a blessing to me.
 

Atsugi

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My thoughts, which you're welcome to accept or reject.


Are you going to do what YOU think is the right thing for her?

Or are you going to do what SHE wants in her last days?

Another thing I'm thinking: No parent wants to feel they are the reason their children lost their life savings, their job, or all the other things she wanted for you.
 

lgelb

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Was a radiology option discussed ("RIG")? GI will do a more invasive procedure and she has no energy reserves. And why subject her to that when without the Trilogy her days are very numbered?

I would cut the air to almost nothing at a constant pressure (IPAP/EPAP=4) and help her tolerate it, with a low-dose Valium-type tab if needed (benzodiazepine) and go from there. It is probably set at 3-4x that pressure. In other words, she needs to literally sleep with it on, even though a benzo will further depress her breathing.

You called it: without the Trilogy, there is no future. So I wouldn't proceed with anything else right now.
 

LeelaaB

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Ultimately, the decision of course is hers. As I suspected, when we got to the hospital I demanded a blood gas. It was through the roof and they were unable to do the PEG. She now has to decide between the trach and morphine. I believe she will choose the morphine. She said she will let me know in the morning. Thank you for you advice and information. It is greatly appreciated.
 

KateEmerson

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Sending you thoughts of strength and wisdom today. Kate
 

LeelaaB

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CALS
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Thank you Kate. I’ll be needing them.
 

Narrowminded

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My thoughts and prayers are with you

Hugs,

Sue
 

LeelaaB

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CALS
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Thank you. Her doctors thought I was a nurse because of my vast knowledge of ALS. I have all of you to thank for that. I’ve learned so much reading through all of the posts. I will be bringing her home tomorrow.
 

scaredwifetx

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I am so sorry. My mother passed two years ago yesterday. She didn't die from ALS, that's my husband but she died of cancer in my home. I know how tough it is when you are faced with thier passing. My mother chose no chemo/ radiation and chose to go on hospice. It was hard for me to accept but she was tired, felt she had lived a good life and was ready to go. She also didn't want to burden me, as Mike said parents don't want that for their children.

Virtual hugs, prayers and thoughts are being sent your way. May you find some peace in the upcoming days.

Be there with her, talk to her, sing to her until the very end. Let her know you love her and stand by her decisions. Guide her through this Journey. Trust me she can hear you the entire time. I will never regret being beside my mother until her last breath.

Hang in there!
 

LeelaaB

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Reason
CALS
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Thank you all for your support. My mom did pass on Tuesday. I was holding her hand and the last words we said to each other were I love you. Then she went to sleep and passed 24 hours later. While my heart is broken and will never fully heal, I am at peace with her passing knowing she no longer has to suffer from this awful disease.

Peace and strength to all of you ❤
 
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