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amandaw120

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Apr 15, 2014
Messages
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Lost a loved one
Country
Uni
State
Florida
City
Boca Raton
Good morning everyone.

Took my mom to the ALS clinic yesterday. It's been 6 weeks since the last one. Her breathing has gone down to 23% and we are very concerned. Her progression has just happened so fast that we just can't catch up. In Jan. her breathing was 86%, then March it was 56 and now 6 weeks later it's down to 23%.

She has difficulty swallowing, but can still speak. She actually speaks very well although it is definitely labored. She can still eat, she ate scrambled eggs and toast for breakfast. She has progressed so much that they can't do a feeding tube the normal way, she would have to go to a specialist. She has always said she didn't want one, but now faced with death, she doesn't know. They also said if she wanted a tracheostomy, she would have to do that now. She is only 62, her first symptoms appeared 7 months ago. She doesn't want to die and I have no idea what to do for her. I don't want her to die either, but I know that it is no kind of life either. The doctor told her only 9% of people in this situation do a trach.

The respiratory therapist said that he can't give a time frame, but to just look at her progression thus far. I am so scared for her. Can anyone please let us know what we can expect?

The doctor said to my father in private he would not do a trach, but it's a decision she has to make. He said we should call hospice in ASAP. We have been trying to get this custom wheelchair, it's supposed to be delivered in the next week or so. Do we wait until we get the wheelchair before hospice or do we say screw it since who knows how long she would actually be able to use it? The wheelchair will be like $5,000 out of pocket. Also, they said that we would have to do the feeding tube before hospice, is the feeding tube worth getting at this point since she can still eat?

Thank you
 
>She is only 62, her first symptoms appeared 7 months ago. She doesn't want to die and I have no idea what to do for her

Hi, Amanda -- I think, if you, it might be good to talk with an ALS/MDA social worker or pastor if you can. These are very hard times and decisions to make.

I am 62, also, and approaching a similar place, but my breathing is better than your Mom's right now. Let your Mom know she is not alone.

Max
 
Sorry to hear all of that.....I am glad your mom has you to help her.
Just a few suggestions for you: Check with her Clinic, sometimes they have loaner equipment like wheelchairs, and they might be able to get you a better price on one.
It sound like her progression is rapid, but I think you have a little bit of time before Hospice. Especially if you can keep her eating!
Best Wishes.....
 
It is my understanding that once you have hospice care that generally means you are agreeing not to add any equipment or treatments other than meds for comfort. Hospice agencies and facilities vary so much these days that you will have to ask your Hospice what would be allowed. I have been told that it is possible to sign off Hospice, get a feeding tube or BiPAP or vent, then sign back on to hospice. But generally you have to have the equipment in advance of getting Hospice care.

The specialist needed to safely insert a feeding tube at later stages is a Radiologist who is trained in using the PRG method of inserting the tube. This doesn't affect breathing or require the amount of sedation of the PEG method so can be done even late into breathing and swallowing problems.

A trach and vent? The doctor is correct. The percent of ALS patients in the U. S. opting for that is low. But in Japan 50% do! That is a reflection of our poor health care system-- and of our doctors advising against it. With your mother's rapid progression, she is probably going to be unable to speak, swallow, or move fairly soon. A vent won't delay that, just prolong her life. Worth it for some but not many with such rapid progression. So sorry.
 
My pals is both vented and has a peg tube. I asked him when he was able to speak if he had it to do over again would he be vented? He said NO. You have to ask your mom quality vs quantity. It's a very personal decision. You need to know it is a 24/7 job. You can't just go to the store, take a shower or walk outside. Please, please make sure you have plenty of help and support. The peg is the easiest to learn and the trach care is not that difficult. I've had to bag him several times and that is a little scary. If I could say anything - go visit a vent patient. Not for a few hours but stay with me for a week. He is existing not living.
 
Thank you for all the information. We definitely need to get the feeding tube before hospice if she wants it, I just wonder if it is worth it since her breathing is already at 23%. This has happened so quickly I haven't done much research on them.
 
My husband has a PEG for just in case, as he still eats and drinks. He uses a sip & puff ventilator to assist with his breathing because he is able to make a seal on a mouth piece. It is non-invasive, and it hangs from the back of his PWC. I am wondering if your mother wouldn't benefit from one.

Paulette
 
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