Old 04-20-2017, 09:53 PM #1 (permalink)
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Default Embarassed to ask but need to know!

My PALS was diagnosed Sept 2011. Prob had it a year earlier. Started in his hands and was slow moving until about 2 years ago and it went crazy.

He is paralyzed except for his neck and a little shoulder which still allows him to drive his power chair. He has always had a really good outlook and smiles a lot. We watch tons of TV. He has a TOBI Eye gaze which has been wonderful for communicating his needs and for conservation.

We are high school sweethearts and he is the absolute love of my life. We have 3 adult children and 1 8 month old grandchild. Our only son has stepped up and he and I take care of my husband.

My PALS has had a Peg for about 3 years and has had a vent for about 2 years now. He gained at least 20 pounds back and has kept most of it. He has done really well on the vent. He has a power chair and we go on walks etc. Much better than the Bi-Pap mask which he was wearing 24 hours a day.

Lately, though, he doesn't seem to be as happy as he was before. He hasn't slept very well in 2 years which leaves my son and I EXTREMELY sleep deprived. He can't get comfortable and is very, very needy for comfort things. The same things over and over. Of course, we tend to all of his needs but it has become exhausting. He doesn't seem to be able to go more than 10 - 15 minutes without needing something from never-ending suctioning, breathing treatments, cough assist, legs and hands adjusting to wiping eyes and mouth to rubbing feet, scratching his head, leaning him forward and back, etc.....

We love him and will do anything and everything he ask to keep him comfortable. He seems down and I wonder about his quality of life.

All this leads to my embarrassing question. How will his life end? Having a vent and feeding tube will keep him from dying of malnourishment and breathing difficulties. I am afraid that he will be 100% paralyzed and unable to communicate and still being forced to continue to live because he chose the vent and FT. I am so afraid that he will live for a long time this way and it be torture to him. Any comments are greatly appreciated. Thank you

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Old 04-20-2017, 10:12 PM #2 (permalink)
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Default Re: Embarassed to ask but need to know!

Hi texans.

Does he have a living will which describes what his wishes are for quality of life and how to end things? Does he have a way that he can either signal to you when he has had enough or that he would wish the vent to be turned off if a certain set of criteria were met?
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Old 04-20-2017, 10:38 PM #3 (permalink)
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Default Re: Embarassed to ask but need to know!

If he goes "naturally," likely it will be aspiration or a respiratory tract infection of some kind. If he is not entering deep sleep, as needing care every few minutes seems like, I'd have his vent data analyzed and the settings adjusted.

PS -- No question is too embarrassing here!

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Old 04-20-2017, 11:54 PM #4 (permalink)
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Default Re: Embarassed to ask but need to know!

Texans, you've asked the BIG question, the one everyone wants an answer to. That's what we're here for.

Of course, no one could claim to predict the end, but there are some things to say about it.

TIllie is very correct to suggest a good, clear, enforceable Advanced Directive. I think it is well worth hiring a good lawyer who specializes in elder law.

The law--and medical ethics--says that every patient has the right to refuse care, even if the decision hastens the patient's demise. The trick, of course, is exactly as Tillie said; you can never be sure when he will lose all ability to communicate.

My wife entered the Totally Locked In State, unable to blink yes or no. Fortunately--and I will defend my use of that word--fortunately, she died that same day. She was well served by the morphine, so she had no fear, no panic, no air hunger, nothing. She went peacefully and with dignity, surrounded by her sisters and brother, holding hands with her son and me.

You might already know, but I'll repeat it; the administration of drugs (like morphine) to relieve suffering, even to the point where the dosage is normally considered fatal, is both legal and moral, because your purpose is to relieve suffering.

Anyone needing a good start on Advanced Directives should google "Five Wishes" to see an excellent guide.
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Old 04-21-2017, 11:50 AM #5 (permalink)
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Default Re: Embarassed to ask but need to know!

Quote:
Originally Posted by Texans 2014 View Post

He can't get comfortable and is very, very needy for comfort things. The same things over and over. Of course, we tend to all of his needs but it has become exhausting. He doesn't seem to be able to go more than 10 - 15 minutes without needing something from never-ending suctioning, breathing treatments, cough assist, legs and hands adjusting to wiping eyes and mouth to rubbing feet, scratching his head, leaning him forward and back, etc.....
I can certainly relate to the "can't get comfortable". Every discomfort is magnified when you can't move, and every minute seems like ten. I have found that an antidepresent with antianxiety effects such as Zoloft has helped a lot. Routine use of pain medication may be needed just to ease all the little discomforts that pile up to make him constantly miserable.

Hopefully he can use the Tobi on computer. Being at my computer and the distractions it offers is invaluable -- to the point where I am totally miserable without it. But the bottom line is, as the others have said, is advance directives and knowledge of how the ventilator can be discontinued without any breathing discomfort. Just knowing he can quit when he has had enough may help.
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Old 04-21-2017, 11:52 AM #6 (permalink)
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Default Re: Embarassed to ask but need to know!

I've promised my husband that I will respect his wishes at any stage. If he has a vent, he can always chose to have it removed. The only think I needed was for him to document his wishes in the event that he is locked in and cannot communicate. He did---in that case, he gets removed from life support. Up until that point he can signal his wishes. He also chose to give me the final decision. Argh. I will follow his wishes.

Can you ask your husband the questions you are wondering about? It took a long time before I could have those conversations without emotion. Now I can, but he's getting emotional about end of life issues. The earlier you get his wishes on this documented the better.
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Old 04-21-2017, 01:00 PM #7 (permalink)
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Default Re: Embarassed to ask but need to know!

Hi Texans, just wanted to let you know that you are not the only one asking yourself this question, I have been haunted by it. My husband is also on a vent and gtube and unfortunately has never been willing to discuss any end of life scenarios or what his wishes are. Having all of these decisions on my shoulders is causing me a lot of stress and anxiety and am worried that it is more than I can bear psychologically. So, as others have suggested, if there is anyway you or someone else could get him to state and document his wishes it would be extremely helpful. Kate
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Old 04-21-2017, 01:39 PM #8 (permalink)
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Default Re: Embarassed to ask but need to know!

I add my voice to those who have this on their minds constantly. My PALS (bulbar onset) is on his Trilogy 24/24 and tube feedings. We were lucky to survive winter without a pulmonary infection and he has not had aspiration yet.

My biggest fear is to watch him progress into a locked in state -- from the beginning he expressed he did not want that and has made it clear on his directive. However, his approach to the disease has been very passive, which leads me to believe he might not make any active decision to stop ventilation, feedings, etc.

I suspect the decision will have to be made by me when he is beyond being able to make decisions. I dread the arrival of that day.
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Old 04-24-2017, 12:50 AM #9 (permalink)
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Default Re: Embarassed to ask but need to know!

"I suspect the decision will have to be made by me when he is beyond being able to make decisions. I dread the arrival of that day."

I worry if I should reply to this at all. Really, I can think of no tougher decision. So I thought about it in the context of my experience with my PALS Krissy, who entered the Totally Locked In state on her last day.

I know just three things that might relate a little, if at all:

First, Krissy told me once that when she was a fairly new doctor, she was bedside to a very elderly patient who was dying. The nurses were asking her for orders so they could do whatever procedures they could to keep him alive. Krissy decided to let him go. The nurses were very upset, she said. But Kris decided it was best for the patient not to put him--and the family--through another few days or weeks of life in the ICU waiting for the next time he would die.

I'm already getting the willies writing this. I'll probably delete the whole thing.

Second, there is a rumor that is rarely talked about that might be true or might be false. Some people believe that when a patient is suffering through their final hours or days, someone, perhaps the nurse who has been tending to them for a long time, will increase the morphine to help Mother Nature on its course. In my own family, I think it's very possible that my father, mother, aunt, and even my wife, Krissy, may have been helped along by the morphine that relieved their suffering. In every case, if it were true, I would thank the nurse.

Third, I cannot imagine life without communication. I would want to check out long before that. I know Krissy would do it for me.

It's terrible to be in that position. But doctors take action on the life-and-death decisions they make every day. So do generals in the Army. The difference is they are trained for it, they are expected to carry that responsibility, and they are well paid. We call them heroes.

If you ask me (nobody did, I know) I would call CALS heroes.

I still think I ought to delete this. Not sure if I communicated my real thoughts very well.

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Old 04-24-2017, 03:07 AM #10 (permalink)
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Default Re: Embarassed to ask but need to know!

Don't delete it Mike, it's important conversations!

I knew Chris had turned a corner and was actively dying 4 days before he passed. Palliative care agreed with me and totally supported me through. We titrated his meds, and never once did we consider prolonging his life.

The entire focus for me was comfort, a dignified and peaceful passing from this world.

So I kept candles burning, beautiful music playing and I kept no records of medications being given, I just gave the morphine and clonazepam on gut instinct, with phone support from palliative care. They would encourage me on how well I was keeping him at peace, yet aware, and how much higher to titrate the doses at need.

This was the only time during the whole illness that I felt at peace, and that Chris was at peace. It's hard to explain, but the horror of FTD faded in those last days and he had a beautiful passing. I was prepared to give him that. CALS who panic (I've known this many times from CALS elsewhere, not here) or who try to cling to life when the end is here not only have a very hard time giving the care, but a very hard time coping later.

Some CALS find this easier to do in a hospital/hospice setting. The right choices are best made well before the situation is upon you both.


Please don't read this as me preaching something I think anyone must follow, this is just my 2c worth.
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Old 04-24-2017, 07:14 AM #11 (permalink)
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Default Re: Embarassed to ask but need to know!

I don't think those morphine doses were " bigger than needed" Mike. They were exactly what was needed for the person's relief of suffering. Sometimes the idea is hard for people who have not witnessed the prolonged struggles of end of life to accept but comfort at that time is the last greatest gift that one can give
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Old 04-24-2017, 03:15 PM #12 (permalink)
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Default Re: Embarassed to ask but need to know!

You're right, Nikki. I didn't word that correctly, so I just now changed it to say what it means.

My father's last hours were classic. He was physically exhausted, working hard for each breath. But the medics in the ICU kept saying, "Don't worry; he won't die on my watch." So he continued suffering. Finally, I pulled a doctor away from hearing distance and told him, "This veteran suffered enough in combat and as a POW. He shouldn't suffer now so each shift can say he didn't die "on my watch." The doc agreed, and discharged dad to go back to his room at the VA, where he had a couple of days of peace before getting on the Big Blue Bus to the Sky.
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Old 04-25-2017, 11:23 AM #13 (permalink)
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Default Re: Embarassed to ask but need to know!

I also knew the end was near the last 2 days for my Litzy... She was on morphine and had stopped eating.. she did have a DNR.. And the Moments leading up to her passing away in my arms were very peaceful for both of us. Strangely the Transport had just arrived at the hospital to take her to Hospice minutes before she passed. I whispered in her ear they are here honey.. Minutes later she peaceful Passed.
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Old 04-25-2017, 11:56 AM #14 (permalink)
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Default Re: Embarassed to ask but need to know!

That is true love.
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Old 04-25-2017, 02:21 PM #15 (permalink)
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Default Re: Embarassed to ask but need to know!

This was such a helpful thread - thank you. We're not at this point yet but it weighs on my mind and I wonder if I will know what to do when the time comes. No one wants to see their PALS suffer. I'm sure I will return to read the comments here again.
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