What stage are we in?

[cpcopin]

I am new to this forum and I am looking for answers. My brother was diagnosed in Aug. 2015. I have taken the lead in coordinating his care. I suspect he is VERY far along in this disease despite the fact that 6 months ago he thought he'd just pulled a neck muscle while golfing. His doctor referred to him as having "cervical" onset which she must have meant bulbar. He is almost to the point he can't speak, he chokes on food and his lung "number" is mid 50's. He's been told he needs a bipap, which for now he's refused, and to give serious thought to a feeding tube. He loses functionality DAILY. His great friends are telling me it's almost time for hospice. I thought the doctor made that call. Help! Is he near the end or is there alot more damage to be done? Do I call hospice or the doctor?

 

[Vincent]

Unlike cancer ALS is not broken into stages. Any diagnosis is considered terminal. Having said that there is great benefit in having hospice involved early. They aren't just for the end, hospice can be of help with a lot of practical things throughout the journey. The bipap is a wonderful device. Tell him to try it for a couple of days, for at least a couple of hours a night. He'll feel much better.
Vincent

 

[Nikki J]

So sorry. Progression is far from linear so it is hard to say what the future holds. Breathing number of 50 is an indication that if wanted it is time for bipap and a feeding tube. Even if he is swallowing fine the worse the breathing the more dangerous the feeding tube insertion. So it is a decision he needs to make and to get done before hospice.

Hospice can give much support if he wants it. It is not just for the last days. However do get any equipment he might want before hospice as they will only cover things they deem necessary for comfort.

We have had members whose breathing stabilized for a considerable time after a fast drop- and ones whose breathing declined swiftly throughout. The things that generally kill us are breathing and malnutrition ( barring accidents, blood clots, infection and all the other things humans are prone to)

Have you talked to your brother about his wishes? Are you his health care proxy, medical POA? It is really really important to know specific wishes but also his general views on end of life choices as not every situation can be predicted

 

[Atsugi]

CPCOPIN: Everyone who posted above knows this disease quite well and I agree with everything they said. I just want to emphasize a couple of things I've learned and experienced.

There is a lot more that could possibly happen between now and the end, but it may or may not happen. My wife lost each body muscle in serial fashion until she was lying in bed unable to move any muscle, speak, or take a deep breath. It got to the point where she couldn't move her eyes to communicate simple yeses and noes. Fortunately (as we saw it), her heart and lungs gave up within 24 hours of being totally locked in, unable to communicate.

But not everybody gets to that point. Often, our loved ones lose the capability to breathe and so they die even while some of their limbs have movement remaining. In any case, medications like morphine will ensure that the patient doesn't experience pain or fear while their body is shutting down at the end.

Live day-to-day, treat the symptom-of-the-day, and let your dad have it his way in everything he decides.

 

[lgelb]

If he does without the tube and BiPAP, he certainly may only have months. The doc must order hospice but you can request that happen. In your circumstances, I doubt you will have any difficulty.

Do you understand why your brother is refusing interventions that would improve both quality and quantity of life remaining? That would certainly be a conversation to have before entering hospice, where he would have to leave the program and return if he changed his mind about the tube, and possibly the BiPAP.

The short answer is, he is limiting his own lifespan at the moment, so if he persists, that will make now "near the end," if only from choking or aspiration pneumonia. But if he starts BiPAP and gets a tube, he could possibly [no guarantees with this disease] live for a few years.

 

[gooseberry]

My husband got a bipap very soon after diagnosis. His fvc was 46. He was able to maintain that for a year. The more he will use it, the better chance he has of maintaining lung fu ction

 

[turnip]

Having a procedure done when a person is still realitivly healthy can really help them. My husband is still walking and eating, but he has no strength, has lost most speech, drools and chokes on mucus. However, he had a diaphragm pace maker put in that helps with breathing and coughing and he had a feeding tube put it. We use the tube to hydrate with water, put in medication and boost to maintain weight. He still functions, walks, drives from time to time, plays with grandkids. These procedures can make a quality of life better, but they have to be done while a certain level of health is in place. It is a personal choice for each patient. Some want to fight for every last day of joy, others don't see the point. It is their journey and we can't take it for them.

 

[cpcopin]

Igeb - his decisions are based on the fact that he says every day is worse then the day before and he doesn't want to prolong his suffering. He is not married and has no children so I don't think he sees the sense in hanging on. I am watching him lose functionality daily. Two weeks ago he used a cane, could get himself a shower and get himself out of bed. After one horrifying morning when it became clear just having me there wasn't enough because I couldn't pick him up, he now has 24 hour care. He's basically on a liquid diet and his speech is getting very difficult to understand. We go back to the ALS clinic in two weeks and I suspect they may tell him it's time for hospice. I'm just trying to prepare myself so I can prepare him.

 

[cpcopin]

I am his medical proxy, his health PofA, his executor...the whole nine yards. I take him to every appointment, buy him all his equipment and have now hired him 24 hour help. He fell on my watch last week and I couldn't pick him so I brought in the round the clock help. He has done an advanced directive and I have given a copy to anyone who is with him and made it clear if he ends up in the hospital it needs to go with him. He has not wavered from day one that he doesn't want any interventions. I have been told to request hospice when we are at the doctor next week. It's just a huge responsibility and I want to ease his pain as much as possible.

 

[affected]

You are an amazing brother. You are following his wishes, and none of this is easy at all. Thank you for being his champion.

 

[Aussiemndcarer]

We are all following our own journey in life. I have been married for nearly 36 years,so I am still trying to tell my husband what is best!!!
He was diagnosed in 2014, & very quickly he needed breathing assistance at night and now during the day too. Although he paces himself so he can go without it for a few hours at a time. So far so good. Often I suggest something new,and it takes a while for my man to accept the new way of doing things. Especially the need for a wheelchair. Initially it was only for support whilst walking. Now we are waiting for an electric one with more support for his neck and back. We seem to be always making choices as to what is best next! If only there was a manual that could predict what is going to happen next. Sadly there is not. We often think that even if we were healthy do we really know what is around the corner for us??? So we take that attitude. So far my husbands breathing is the most affected. He can no longer walk & has limited use of his arms and hands. Speech gets tired but is mostly ok. Luckily he can still drink and swallow. So we have a few glasses of what we call "red morphine" every evening! Makes. Relaxing & breathing so much easier.