A difficult question

[Forester]

My fear is of an end where I fight desperately to breathe for days.. I want peace at the end, not terror. How can that be achieved?

If this question is inappropriate, I apologize; delete the thread.

 

[Mediasmart]

It certainly is an appropriate thought and no apologies are needed. Personally I don’t want that type of day to be my last and will plan accordingly. To your point my fear isn't the dreaded last gasp but the fear of not seeing my wife that one last time. I will retain the right to pick my time...that is my solution.

 

[ottawa girl]

Not inappropriate at all! I think all of us PALS fear the end... I am confident in a peaceful passing.. Here's how my conversation with the ALS nurse went: ( I quote from my recent post)

" I've just recently had " the talk" with ALS nurse. Here's what the plan is.

The palliative care doctor & nurse visit me at home. They come very early, rather than later in the game so that we get to know one another. We discuss all options. Visits will continue monthly and increase as warranted. At some point, they will determine that minute amounts of morphine should be introduced to subtly resolve the air hunger. I was told that as doses are increased, I will continue to be lucid and can opt to be lucid as long as possible. ( not everyone wants that) . Alternatively, I can wait until near the end for morphine, but in order to effectively address the probable more strident and frightening air hunger, a larger dose will be required and which would likely render me semi conscious. From what I understand, the small amounts, I presume will keep me calm. It will be my choice at anytime to enter our local hospice or remain at home.

I may have misunderstood or misinterpreted these details because it was a difficult conversation. Once I meet my palliative team, I will correct any error on this post."

I've not yet met my palliative team, but again, I trust that I will not suffocate to death... as had been my greatest fear.

 

[Mediasmart]

Elaine..how do/did u handle your decisions when u informed your family and friends that u may not wish to make it to the last moment...I think that may also enter in to the original question/concern.

 

[ottawa girl]

I have chosen to be lucid as long as possible. That's why the plan is to start the morphine in tiny doses, earlier. I was told if I wait until the end... The dose required to stop from feeling acute suffocation would likely make me comatose.

But you know what they say ... " Best laid plans".

My family is aware I do not want to be hooked to an invasive breathing machine. They support my decision. I have yet to decide if I want to die at home. I wonder what such a memory would do to my husband... there is a wonderful hospice in my town and the nurse told me the team will know when it's time to move me there - should that are my desire.

Frankly, there's not a day that goes by that I don't wonder and ponder.... For me, the most troubling aspect about death is not about the going... It's about the leaving. I sure will miss everyone! But the one thing I am certain of - I want a church funeral and afterwards a gathering of my friends so they can enjoy fabulous appetizers and the very best brunello and prosecco available.:grin:

 

[Mediasmart]

Thanks Ottawa Girl. The family is getting "the plans and wishes" after my next clinic visit. Right now I'm not into tubes to prolong and I want to make sure they know that it isn't the way I want them to remember me....not the way I want to be remembered either.

Forester wrote that he wants peace at the end. This is an interesting set of thoughts and I thank you all for letting me hijack the thread a bit....apologies to Forester and kudos as well for opening the thread.

 

[bigmark1954]

Forrester......your question is valid, we all contemplate the end. I think you should feel a little comfort in Hospice competence.
I have watched both of my parents go through the motions of Hospice, and they were definitely not suffering or frightened.
On a lighter note we should all plan out our funeral festivities .....I am torn between having my ashes scattered across the dance floor at our local stripper bar...or perhaps having an open casket wearing a tuxedo with the sleeves cut out, and having Nazareth and Def Leopard music in the background! Keep in mind that I am a tattoo artist with fully sleeved tattoos on both arms.
keep the faith....................

 

[Txgirl]

This is a very valid question & one all PALS have. Elaine's answer was correct.
I am on hospice care & started the morphine last week because it is difficult to breathe. They will increase the dosage as I need it to make breathing easier.

I will go to the hospice facility at the very end, because it will be too difficult on my husband & son if I pass here at home. My husband is administering the morphine now but says he can't give the final doses if i stayed here at home. He wants a nurse to do that & i agree with that decision.

 

[ottawa girl]

@media... Don't carve your plans in stone... Still early in the game for ya isn't it?

@bigmark... Love the lighter note!

 

[affected]

valid question, and we will all answer differently.

firstly, I know I am a CALS, but it is something I have discussed at length with my husband.

Usually the build up of CO2 causes drowsiness, so if they give you extra oxygen and morphine you shouldn't have too much air hunger and distress.
Elaine is so right about starting early, taking tiny frequent amounts of morphine or similar. The idea is to PREVENT high pain or panic, not have to climb over it once it sets in. You are more lucid and in control this way too.

The decision of where to die is very personal for both the PALS and CALS.

I look at it this way - I WANT my husband to die here at home. He couldn't quite understand it at first but for me it means he can have his final days with me and we can do it our way. I don't want to sit in a hospital anywhere, and I want to do whatever I feel when it happens. I can keep him here with me as long or short a time as I want before I have to call anyone in. I like this idea, and I know that I won't see any room in the house as the one he 'died' in, I will see him having as much dignity and love as possible and always be grateful I could provide that. I personally would have no problem giving him a final dose of anything.

However, having said all of that, this is how it is for ME, and I wouldn't tell anyone they should do it my way, or differently to how they are. Some people would genuinely be terrified of being alone with their PALS when they gain their wings. In that case, I would not want any CALS to go through that.

Forester, many PALS don't even realise the end is upon them and simply don't wake one morning. I constantly pray my husband will go that way and I make sure that I enjoy every evening with him and go to sleep with an air of love in the house.

 

[zoohouse]

I have been present for many ends, and there is definitely not reason for anyone to suffer or have air hunger. We can easily titrate morphine, and intact I was the nurse that gave my brother his morphine to the end. He was lucid up until 45 minutes before he passed, and he was at home in his favourite recliner with most of his family around him. As much as I know that I can make sure my husband is calm and comfortable until the end, it takes my breath away to think about the end. Please be reassured.

 

[pollysue53]

My husband passed away on January 6. That was his greatest fear about dying. The morphine helped so much. He didn't struggle for breath as he thought it would. I pray that you find peace with this awful disease.

 

[Mediasmart]

@media... Don't carve your plans in stone... Still early in the game for ya isn't it?

haha! don't worry, i won't. can't anyway, my chisel hand doesn't work too well.

 

[Steve-F]

We have just engaged hospice for my mom. We are hoping they will insure mom is comfortable in the last stages of her life. It was hard to make the decision but we hope it is best for her.

 

[Atsugi]

Allow me to pile on.

Love morphine. My wife died at home, peacefully, happily, without suffering, surrounded by family.

DO carve your wishes in stone. At least put them in writing, on yellow paper, for your CALS to show to emergency personnel. They will "err" on the side of extensive measures any chance they get. On those occasions when you have to go to the emergency room, your CALS needs to educate the doctors about ALS and your wishes.