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Graybeard

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I am on bipap 24/7 for the last two-three weeks, and it's a big hassle. I know it's only going to get worse, and I still have to do my complicated two businesses taxes.

Wifey and sons are supportive. D-I-L needs a job, so it fits.

VA say the trach is easy. I will be in ICU and hosp up to a week. Just hope there are no superbugs there. I think about Cheerleader's husband.

On the vent, Something else will get me, most likely. I'll get the following written and legalized:

"If I don't or can't say or write I WANT TO LIVE TODAY, then remove the ventilator."

Ideas?
 

Clearwater AL

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Get Real
GB, do you have an accountant that can do your taxes? Can you afford to have someone prepare them for you?
 

Lilacs53

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Wish I had the words to say, but I don't. It's a very emotional subject, one that I'm sure we are all dealing with. Think about it carefully and talk it over with your loved ones, for your decision will not only effect you, but them as well. This is a subject that I am dealing with myself...just how many machines do I want to be hooked up to? When is the quality of life no longer present ...
 

cheerleader

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Graybeard, so hate that you are faced with this dilemma. Know you have thought long and hard about it! Love that you feel your quality of life is good enough now to continue fighting this monster. My thoughts will be with you as you journey down this path and trust your spirit will sustain you in this fight. Hugs and love to you and your family. Donna
 

GilWest

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I am on bipap 24/7 for the last two-three weeks, and it's a big hassle. I know it's only going to get worse, and I still have to do my complicated two businesses taxes.

Wifey and sons are supportive. D-I-L needs a job, so it fits.

VA say the trach is easy. I will be in ICU and hosp up to a week. Just hope there are no superbugs there. I think about Cheerleader's husband.

On the vent, Something else will get me, most likely. I'll get the following written and legalized:

"If I don't or can't say or write I WANT TO LIVE TODAY, then remove the ventilator."

Ideas?

The trilogy 100 is a nice little machine...
Once trach has healed and you are home, you will not have to perform the complicated care procedure the hospital will teach you...
Ask for washable "Whisper Swivels" for your circuit...
You will have LOTS of secretions after the procedure, but they will go away over time...
 

Atsugi

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Very important subject, Graybeard. Important to me since my children might end up with ALS like their mother did.
Are there some other views?

If I can't communicate, I think I don't want to continue on. But what do others think?
 

GregK

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BK2011

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I'm still vertical coming up on four years since diagnosis. The thought of not moving when I want to move keeps me awake at night, guess I'm a bit claustrophobic. I figure when my diaphragm doesn't work, it's God's way of telling me it's time to move on. I've had a remarkably good life; amazing wife, great kids, and wonderful grandchildren, I'll miss them all; but we all have to die some time and I'm not particularly afraid of dying. While I pray they'll come up with a cure, I'm hopeful that it will happen before my kids or grandkids have to face ALS; I don't think it will happen in time to help me. I am OK with that, sh** happens and I got ALS, I Still think God was awfully good to me in my lifetime. I will not have them hook me up to a vent to prolong my life.

All of us with ALS, experience a little different version. We all have our thoughts on accepting it or "fighting it." A lot of that depends on where our loved ones are and what we need to do to take care of them (I know I'd feel different if my kids were young or my wife needed something from me to get by). I'll pray everything works out the best it can for Graybeard and his family. I do the same for all of you.

Graybeard- Best Wishes!
BK
 

nebrhahe53

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Grey beard all the best. Yesterday I was given less than a year primarily from lung issues, so for me a vent probably wouldn't matter, still I don't think I'd want to be hooked up to one. My quality of life is already going down fast and I think it's probably time. I am scared of dying, but even more scared of living hooked up to machines. My bedroom already looks like a medical center
 

tripete

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Graybeard, I have no idea what I will want to do when it is my time. I do agree with you that being alive and unable to communicate would be unacceptable, the way you phrase it is exactly what I have thought.

My thoughts are with you and all of us as we have to make these immensely personal and terrifying decisions.
 

Lilacs53

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Joined
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Messages
107
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PALS
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09/2014
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AZ
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I have been thinking more and more about Death with Dignity and hoping a bill will come to AZ for it. I had read somewhere that t was, but according to this website it isn't. The website explains more about it [URL snipped, but Google can surely find it easily enough] what do you all think about it?
 

cheerleader

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A VA doctor once told my husband when he was ready to die, the doctor would help. Not talking assisted suicide per say,but our daughter who was a hospice nurse explained things like increased morphine can speed up the process and make death peaceful. Maybe this is something you can explore if you are thinking about the end (as we all do!)
 

Diane H

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Messages
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PALS
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11/1985
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US
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IN
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Fort Wayne
The VA doctor was correct. You don't need to live in a state with "Death with Dignity" laws or similar to allow doctors and nurses to provide medication for comfort (including anxiety and shortness of breath) even if that medication might hasten death by hours or a few days. That is different from the active and intentional administration of drugs to cause death quickly in a person who, although they may be terminally ill, are not yet dying which such laws allow.

For someone on a ventilator (or dialysis, feeding tube, medications to keep them alive, etc.), the situation is somewhere in between. Any patient always has the right to refuse or discontinue any medical treatment, including equipment, that is or will keep him alive. In these cases, a doctor is required to honor the patient's wishes and stop the treatment. The doctor is also ethically required to provide any comfort measures to ease death when the treatment is stopped. So when a vent or BiPAP dependent patient decides enough is enough, existing law allows the patient to die peacefully. No state "Death with Dignity" type law needs to be in place in these situations.
 

affected

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I totally agree on the 'Death with dignity' comments. With sincere respect to every one of us here and all points of view I would say.

Australian law and the current government is very much against assisted suicide.

Palliative care however is most compassionate and they were incredible as they took me through the last 4 days for Chris. For those new to the site Chris went into active dying last Easter Friday morning, so it was all public holidays and no services available at home except the 24 hour palliative care phone line. This turned out to be perfect as all here was so peaceful.

I have always had such incredible comfort from knowing that I could keep Chris completely fear and pain free for the first time in his whole illness.

I noticed 6 months later when a local CALS friend was at the same stage her husband was far more distressed at times, but she was holding back on meds, being given conflicting information and very stressed herself.

I felt very calm in that end stage and just looked after him by gut instinct with palliative care cheering me on and advising how much to increase the meds by each 12 hours.

As Diane says so well, anyone on a vent can elect to have it removed. This will take far higher levels of meds at the time but this is simply a doctors order so is easy to get.

I have noticed that some people think that if they elect for the vent then they have committed to it for a very long time. It is important to know you can elect to stop using the vent as has been shown well in this thread.
 

nebrhahe53

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My Dr also told me when the time came he would make sure I didnt suffer.
One issue is that many of us suffer now. I know there are at least several times a day I feel air hunger or excess mucus, then it seems to ease. Unfortunately there are no drugs allowed for that, at least here. And a respiratory therapist told me that with ALS we just produce more mucus-lucky I guess.
Of course I could go out on the road and piss someone off and let them shoot me, the right to carry firearms seems to be much more important than people suffering in this state.
 
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