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Debbie53

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Hi again everybody,

I feel bad that all I do on here is vent about my own problems. It's just that everything has happened with my dad so fast! I don't have a chance to absorb it before it gets worse again. 4 weeks ago tomorrow he moved into a nursing home, the same man I've known for 53 years (inside, I mean). His personality has changed so much since then, his understanding of what's going on, his ability to converse and focus. The hospice people feel sure it's not medication because he's on such low doses. (The problem is, he does have to have something available for pain and air hunger, so he's now getting methadone instead of ms-contin for pain, but still roxinol for air hunger. We'll see if that helps.) They think it's probably just part of the dying process...that whatever is killing him is also affecting his brain.

I want to test his blood, test his breathing, whatever wouldn't be too invasive. But he seems to want to just fade away... only eat as much as he wants (almost nothing) and give up. We've always known he didn't want to "prolong it", but since he's so confused and irritable, it's hard to know if this is the "real" him. The hospice nurse said that death can't always be comfortable and serene, no matter how hard we try.

Any advice?
 

brooksea

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Debbie,

Sorry about your Dad's situation at Hospice.

I'm pretty sure if your Dad is not on any kind of breathing assistance, his brain is not getting enough oxygen. This will cause irritability and confusion.

I don't know what to tell you. They should be able to dose him enough with morphine (Roxanol) to make him comfortable and less irritable, I suppose.

You and your Dad are in my thoughts. Hang in there gal! And don't feel bad about anything you feel or say. We have either been there and done that or are going to have sooner or later!
 

BethU

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Debbie ...
You have said before, I think, that your dad told you he was ready to go .... he's had a great life and enjoyed every minute of it. He's told you he doesn't want to prolong the end. I'm just going to be the devil's advocate here and say that he made his wishes known to you long before this, when he was his "real self." Deciding that you're ready and choosing to let go of a futile struggle isn't "giving up." He was at peace with his life and his death.

That said, moving to a nursing home can be bewildering and disorienting, especially to someone in a weakened condition who is taking a variety of medications. The irritation and confusion can be a part of his ALS. I think that the hospice should be doing everything in its power to comfort him and provide a serene environment. Hopefully, you can convince them to look for some solution to his confusion.

I hope he will have comfort in his final days. He is blessed to have such a loving and caring daughter.
 

Debbie53

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Thank you, Beth - and CJ, too - - he is on oxygen (usually 3 ) - is that what you meant by breathing assistance, or did you mean a Cpap or Bipap? Because when I bring up those possibilities they say he'd have to go to a sleep center and be tested all night. And no one seems to think those options make sense, anyway.

Anyway, I appreciate your good thoughts. Same to you!:smile:
 

bossman

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my son feels the same way as you do, because I am in the same boat. I am 54 I have ALS very aggressive. Things get worse by the day so I do know how you feel and he feels. I can't cook right type on a computer I'm using Dragon right now. Myself, I can't wait until the end is here for a few reasons. My son is only 18 he has his whole life. I don't want have to burden them with all of this. And being confused and grumpy. I'm that way all the time, and I can still get around and eat. So I think this is why he so grumpy. He can't do anything he has to rely on, everybody for everything it sucks.
 

Debbie53

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That's true - he was always so independent. Now all of his dignity is gone. I feel bad for you, too. Not a lucky hand to be dealt, that's for sure.
 

brendapals

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Debbie,
My heart aches for you right now. The hospice nurse should NEVER tell you that a person can't be comfortable and serene in the process of passing away! Even though your dad may be a "DNR", that doesn't stand for DO NOT KEEP COMFORTABLE!

Yes, the oxygen will help him, and they should adjust his medicine to the point that he doesn't have pain or air hunger at all. I hope that you insist on that happening!
Please know that you and your dad are in my prayers and I wish you the best,
brenda
 

Debbie53

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Thanks for the thoughts. If I can figure out whether he IS in much physical pain, I will insist on him getting enought drugs. Just never imagined it could be so hard to discern the problem! He also always feels that his nose is plugged up, but going in there, I can't get much out.

Hope everyone has a good Sunday. Debbie
 

JACKIEMAX

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If Your Dad Is Indeed At The End, As I Feel My Husband Is
At This Time, Then I Would Insist He Have Some Ativan
And Roxinol Also, For Comfort.

My Husband Gets Irritable Sometimes Only Bec.
He Feels So Helpless, And Restless Bec. He
Can't Get Comfortable.

Even Tho This Is Not 'physical' Pain, I Intend
For Him To Be Comfortable At All Times If
Possible.

Jackiemax
 

Debbie53

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Well, my dad's oxygen machine was turned up to "4" when I went in today, and it's never been that high before. Turns out his level last night was 70. He's also stopped eating, and he doesn't want to drink even water. He would really like to be gone yesterday. A Hospice nurse came and evaluated him, saying that he's not actively dying at this time, no discolored feet or whatever they go by, and that they would do the same thing at the inpatient Hospice unit at the hospital as at the nursing home.

The best they can do right now is increase the Roxanol from every 4 to every 3 hours, IF HE ASKS FOR IT! I tried to make the nurse understand that he won't remember, but they are SO cautious...esp. because he's still in his 1st week of Methadone. I tell myself, baby steps, but it is maddening.

Jackiemax, what's going on with your husband?

Debbie
 

sharonca

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Debbie - I have a bi-pap and didn't have sleep study. And I was told that oxygen is hard on a pALS lungs. Someone else here with more knowledge would have to explain that one. My neuro at the ALS clinic agreed with the oxygen warning. Fighting with nursing staff is so maddening. Just remember that they work for you.

Sharonca
 

JACKIEMAX

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Debbie, Thank You For Asking About My Husband, Horace.
He Is Not In The 'active' Stage Of Dying Either, Per Hospice
Nurses, And The Discoloration They Are Talking About Will
Show Up As Purple, Splothy Bottom Of The Feet, Then The
Knees And Hands. This Is Just Right Before They Die I Am
Told.

But My Husband's Decline Is Rapid, And He Is Miserable.
He Is Weak, Tired, And Can Barely Talk. His Oxygen Level
Is 5 Now, But His Bipap Is 20 And Without It He Would Die
Within An Hour.

We Are All Here For You.

Jackiemax
 

givenin

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Debbie Sharona is right oxygen is not good for someone with ALS it should be a bi-pap and I hope someone here can respond with the medical reason why. Does the hospice staff have experience with ALS patients? It is not the same as someone with cancer, or something else. There are different needs. Check with the Doctor check with the ALS clinic, don't give in.

Good luck
Cheryl
 

brooksea

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from gbppa.org/oxygen.htm website regarding administering oxygen for neuromuscular disease:


"Administering oxygen does not provide assistance to the weakening respiratory muscles, but gives both the patient and the doctor the false impression that appropriate treatment is being provided. While in fact hypoventilation is mistaken for an oxygen transfer problem. Indeed, administering oxygen can mask the problem. Also there is a danger of causing respiratory depression by giving oxygen. Oxygen is not the treatment for hypoventilation. It will improve the SaO2, but not the hypoventilation and may increase the danger of dying of sudden respiratory failure."

form a PALS/CALS blog re oxygen: www.als-shirleyshope.com/journey.htm

"She told the doctor that she was sleeping with oxygen that was provided by Hospice last week. It has helped her to sleep. She was told that oxygen was not good for ALS patients because while your brain appreciates the oxygen, your lungs will just give up and shut down. Many ALS patients go to sleep and never wake up. She needs to sleep with the ventilator, which she can’t seem to tolerate."

Maybe someone else can explain further.
 

givenin

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Thank you that was perfectly clear for me anyway. And not many know that happens with ALS. If an Ambulance was called and the PAL is short of breath that is what they would administer and the same with Emerg staff and nurses on the ward, it is standard treatment.

Cheryl

This is why you have the title of very helpful member Jimercat, thanks again

Jimercat's post should be one on it's own as I am sure there are many who are not aware of this about oxyegen and I am to computer inept to cut and paste and...
 
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