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Tracy500

Active member
Joined
Jan 28, 2015
Messages
57
Reason
CALS
Diagnosis
06/2014
Country
US
State
Wi
City
Madison
Today was our clinic. Day and we were told that since his ALS is advanced, that we need to look into hospice sooner than later, and also decide on trach or no trach. Iam still stuck on the word, "advanced stage" does that mean we are in the last stage before he is bed ridden and passes? I'm not understanding it fully. He was to,d since choking is becoming a problem with eating and drinking that they want full tube feeds for nutrition now. We've been doing meds and water only with feeding tube since October so now the nutrition also. He is very upset over this and we are not sure how long he has to live now. Any help with this? Where do we stand, I know each Pals is different, but it's been almost 2 years (this June) since diagnosis. How long do we have? Thank you
 
Tracy, slow down and take a breath. What clinic are you going to? What tests or exams or questions prompted this claim of "advanced stage"? ALS isn't cancer and thinking about "stages" often is like trying to read a book in random chapter order. Some clinics are better prognosticians than others and many PALS defy predictions.

Second, the choice to do hospice and when is totally down to you two, not any clinic or any doctor. And no one should be forcing choices on you as if you were on a used car lot. You can ask for a hospice order any time. What they should have said is just that.

The best guide of how much nutrition he needs via the tube vs. by mouth is his weight and nutritional status. (And many of us recommend real food, blenderized, over commercial formulas.) It doesn't matter whatsoever what "they want." It's what you and he want, and what he needs.

The best guides for "how long" are breathing (doing well on BiPAP or pre-BiPAP as opposed to feeling air hunger, choking, aspirating, coughing uncontrollably, etc.) and nutrition. If you have more insight to share on those, we can be more helpful. One thing I know many of us would say is that clinics are not the last word, they vary quite a bit in terms of helpfulness, and many of us stopped going well before death. If you don't feel helped there, you have the right to seek ongoing care from any doc or nurse practitioner you like.

The reported median (half more, half less) survival in ALS is 2 1/2 years, but 20% of PALS live 5+ years, 10% 10+. Those are old numbers, but hopefully they persuade you that two years in is hardly an automatic death sentence.

ALS is an incurable disease. A trache is a serious lifelong commitment, the disease continues to progress (in terms of mobility losses) and most people here did not choose it. But read some of the threads here if you are possibly interested, and you will see many of the major pros and cons.

Tracy, we make worse decisions when we feel under pressure, so above all try not to be that. Do something fun with him tomorrow and ease into the conversations that you want to have, do your research, ask whatever questions here you want, nothing's too big or small.

Best,
Laurie
 
Tracy I think they should have explained this to you fully.

ALS doesn't go in 'stages' like other diseases, so to say that without an explanation of what they meant is really distressing.

Is he mobile at all now?

It sounds like his breathing is very poor and obviously his swallowing is outright dangerous. Is he on bipap?

Does he have clear wishes expressed on a trach? I see on other threads that you also have young children to care for, and no help, so how do you feel about it (if I may ask)?

Being in 'advanced stage' doesn't always equate to any timeline I'm afraid. Some PALS still go on a long time after they had been told they would be gone, while others are just suddenly gone without realising it was likely to happen.

With my husband for example, I knew in my heart he was in his last year at the xmas. I had no idea tho how long he had, maybe weeks, maybe many months. I had this strange feeling he would not see Easter. On the Easter Friday I knew he had tipped into the end stage (for want of a better phrase). He passed peacefully early hours of the Tuesday morning.

I think that bringing in hospice may well give you some assistance both with hours, but also with acceptance and really keeping him comfortable and with the best quality he can have for however long he has. Many PALS are on hospice for a long time, so even that decision does not signal the end has been reached.

I'm so sorry, the way this was presented would be terribly distressing for you both.
 
Tracy, I'm so sorry you're at this point.

Many of us don't believe there are "stages" to ALS, and you're right that each PALS is different. I'm curious who told you that the end was nigh? A doctor, nurse, or clerk?

We chose to have hospice at home, and I recommend it. To trach or not to trach is a tough decision with many pros and cons. There is, of course, the benefit of possibly living longer with the trach. But I see the flip side: the longer a PALS lives, getting worse and worse, the more work the CALS does and the longer the PALS might suffer total immobility. I'm very glad my wife chose no tubes, no trach, no feeding--she said just let me go, and give me morphine so I'm asleep on the way out. That's just one view.

I'd be surprised if anyone gave you a time frame. The big deal is usually breathing. I believe, though I could be wrong, that once you're totally bedridden, your ability to breathe lessens quickly.

The important thing, I think, is to respect the PALS wishes and protect the PALS from the interference of others. Don't let others twist your arm to do what "they" want you to do.
 
the word "stages" is not really applicable with ALS. I appreciate Atsugi's comments about the way his wife choose to go. Prolonging life and prolonging existence are two very different concepts. All of us on the forum who are going through this nightmare can attest that the disease has a progression and we can identify certain markers when the disease took a turn for the worst. Even when I talk to people about my situation I use terms like "in the early stages" she could pivot on one foot but a few months later I had to carry her to the couch. It is somewhat normal to talk about stages because the disease itself is progressive. So when a person can no longer walk, or speak or their breathing is below thirty percent, using a term like latter stages of the disease is not uncommon. However, unlike some forms of cancer, it is difficult to put a timeline on when the PALS is going to take his/her last breath.
 
Alligator, many here have had years, several years, past the milestones you identified. That's another reason why I try not to delineate any beyond what I did.

Tracy, another thing I meant to say is that many PALS don't have much or any of a bedridden stage, so try not to focus on that. I know it sounds scary, but often that stage is largely avoidable.
 
I supposedly have under a year left and hospice was also recommended. But here's the thing, I DON'T CARE WHAT "THEY" SAY. The doctors who treat us are USELESS. Yes they are nice, the nurses are nice, blah blah blah, but in the end they do nothing but try and treat symptoms, and usually get that wrong too.

My wife and I are planning another cruise the he11 with what the experts say!
 
On the mda site they do discuss stages of als. Just saying....however they give no time frames because really, who knows
 
@alligator - that was a really clear explanation, well said!

@Pete - go for it, only you and your wife can define your lives :)
 
Tracy, I also know the feeling of wanting to know "how long do we have?' Today was our clinic visit and my husband is now 10 years from when he first had symptoms. He has progressed fairly rapidly over the past 10 months, particularly in comparison to the years before that when his progression was very slow. I asked his ALS clinic neurologist if he had any guess as to how much longer we had. He said that if he didn't get pneumonia or have a serious fall that he could keep going for a few years. Truthfully, I don't think anyone but God really knows how long each of us has to live but I think it was nice to have a doctor who was more optimistic. I don't think it helps any PALS to say you have under a year left, as in Pete's case, or use the term "advanced stage", as with your husband.

Sharon
 
Do it. Go on the cruise
 
Steph, the "stages" myth is just a PR move. It's bad form to admit that millions of dollars later, we know little, so at least it's "stageable." The literature only speaks of "disease patterns" and not very well.

I find this sentence from the MDA page (based on a badly-designed survey study) particularly offensive:

"Although this stage is all-consuming for caregivers, surprisingly many report great stability and satisfaction in their daily lives at this later stage of the disease."

Not hardly.

Best,
Laurie
 
Sorry to disagree respectfully Laurie, as I don't know the article, maybe you can link it?

There is a stage which is when they go into actively dying.
For both Chris and I this was the only time during his entire illness, both pre diagnosis when we knew something was terribly wrong but were still hunting the cause, and post diagnosis, that we both entered a place of peace and calm.

Maybe for Chris it was the palliative meds that he finally not only accepted but wanted, but for me it was an amazing time of the final acceptance that he was not going to have to become bed bound (which he was very close to), or experience any more progression that was tormenting him so terribly, and he was not going to suffer any more torment from the FTD.

Maybe the survey brought out things like that. I could be totally wrong when talking about that particular quote or article as I've not seen it. Maybe satisfaction was the wrong word for them to use, I just know how calm we both became. It was quite amazing really, as calm had never been in our world during ALS.
 
Hi Tracey,
I know many have said this, and I also know the more that can reassure you the better. At our last Clinic, they said the very same thing. We did go on hospice, and it has been very helpful. I don't look at it in the traditional way. I like to think of it as extra help!

However, he has been on full formula only for over a year now. When he first started choking on things about 18 month ago he still ate things until this recent January. He has been using the bi pap at night since he was diagnosed. Just recently in the last month he has had to use it during the day for a few hours. It doesn't sound like your even close to some of these progressions. Don't sweat what they say at clinic, they are very proactive, making sure you have what you need before you need it.

What was his FVC? If it helps as a bench mark, although I know some will disagree as it is not a very good one, its all we have. My Pal was at 17 in Dec, and PAL is still going today. He has almost lost his ability to stand and walking is def out. None of this predicts anything for you but it may help you compare. Thats all we have. I see your from Mad town. Always willing to help another cheese head! I grew up in MKE, and went to UW.
 
Tillie, of course there is a period of actively dying, which you and I have both experienced as CALS. And in that period, yes, you know. And that would be my message to CALS like Tracy: if death in your PALS' case is one of winding down, you'll know it when you see it, so don't sweat it day by day, beyond legal/financial planning.

But the number of unexpected, fine-one-day, gone-the-next deaths we have seen here attest that there's nothing stable or satisfying (at least to me) about any imaginary ALS stage. We shouldn't pretend otherwise. Knowing you are making a difference is satisfying, yes, but the reason for it is not.
 
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