My Father's Story

[renraku]

My father was diagnosed with ALS a few years ago. It started as a weakness in his left arm, which was first attributed to shoulder problems, which meant surgery had to be done to repair the shoulder joint. Then the doctors said it was pressure on the nerves coming out of the spine that innervate that arm, so a spinal fusion surgery was done as he did have a swelling disc. Neither of them did any good.

A whole host of tests and such later, and my father was diagnosed with ALS and put on Rilutek. My father is 75. I live with my mother and father so that I can take care of them while I am in college. My mother has COPD and they're both chronic smokers. It would be wrong for me to try to convince them to stop smoking after all of this.

Anyway, my father's current condition is that he has no use of his arms but minor use of his hands. His swallowing muscles are getting weaker, and the disease is starting to affect his walking and breathing as well.

He is adamant about not wanting to be placed on a respirator of any kind, including BiPAP, and not wanting to be tube fed. I can't say I blame him. It will be a short while before any of that is needed, but there is no way my mother and I could stand seeing him gasping for air for days at a time if his CO2 levels got too high.

We live in a country where suicide and assisted suicide aren't allowed. So, if someone chooses to not fight to the end, how are they allowed to die? For example, if he were rushed to the hospital because he was gasping for air, what exactly would they do before releasing him into the exact same situation? I'm afraid that is what it will end up.

 

[Katie C]

Before you need it, look into hospice. They will help support both you and your dad through the dying process, including medications.

 

[KC2U2]

Make sure he has an advance medical directive which spells out what services he wants, check into hospice care for the end stages, they will try to make him as comfortable as possible

 

[renraku]

Thank you both for your advice.

Anyway, even with a DNR and his wishes made known and legally binding, would a hospital or hospice at least dope him up so he isn't gasping for air until he dies? I'm not sure of the protocol they use, but when my grandfather died of lung cancer he spent the last week of his life gasping for air due to only having like a third of a lung that still functioned, and finally died from exhaustion. The nursing home he was at didn't administer painkillers because he wasn't in pain, and they didn't have access to respirators there.

 

[smwelder]

from info i gathered hospice will medicat a person so to ease there comfort as they pass. kind of like dieing in your sleep peacefull

 

[renraku]

Thanks, smwelder. That really takes a lot of anxiety out of my mind.

 

[Katie C]

My mother also died of lung cancer. She lived in an assisted living apartment. Her insurance (medicare plus supplemental) paid for us to have hospice come to her apartment. One of us and a nurse was with her 24/7 for the last three weeks of her life. She received morphine and ativan to relieve anxiety, pain and ease breathing. She had oxygen 24/7. If her agitation seemed to increase in the slightest, her medication was increased. There was no gasping, no fear, she just peacefully passed.

Glen had signed his DNR, I had medical power of attorney as well as fiscal power of attorney, and was well aware of his wishes. He too received morphine (every 2 hours the final 2 days) as well as his other psychiatric medications.

You are right... they're not going to quit smoking. For years my mom would remove her oxygen (she had COPD long before the lung cancer developed), go out on her patio to smoke, then come back in. Gets to the point it's just not worth the fight.

I think right now you could do a lot to ease your mind by just doing some online research about hospice, and about death caused by increased CO2 levels. It's understandable that your experience with your grandfather left some scars, but there is a lot of help available to you and your parents to make sure that doesn't happen again.

 

[Ms. Pie]

May God protect and comfor you and yours. You are a good and loving daughter.

 

[notme]

hi

Your grandfather should have been medicated. The morphine usually used helps ease the 'can't breathe" anxiety those in the final stage of disease feel.

A DNR doesn't mean that someone isn't made as comfortable and pain free as possible. It is, basically, just saying that he does not want heroic measures to keep him alive should his heart or breathing stop.

My prayers are with you

 

[Atsugi]

Renraku,
Notme is right.
I have two stories:
BAD
- I watched my dad struggling for air for 5 days, because every doctor and every nurse was determined to ensure that their patient didn’t die on their shift.
- The problem was that he didn’t have his wishes expressed and his wife, my mom, could only say, “save him, save him” even when everyone knew he was in his last hours.
- So I visited his nurses at every shift change until I finally I found a team who would release him.

GOOD
- My wife has incredibly fast progressing ALS.
- She’s also a doctor, and she wants to die at home, and she knows how to do it without problems.
1) Morphine eliminates the air hunger and allows the CO2 to build up, which will leave him tired but happy as he quietly passes. There’s no pain, no anxiety.
2) Choosing to die naturally is not suicide. Administering pain medicine is not assisted suicide. Check your state. In Florida, withholding and withdrawing care is legal.
3) Again, check your state. In Florida, a person can request that food and water be only provided naturally, and can refuse tube feeding/
3) Is your dad a veteran? The VA has excellent resources for ALS.
4) YOU MUST have a Living Will. Google “5 Wishes” Living Will. It’s the best, easy and legal. Specify exactly how he wants to die.
5) Have dad’s doctor sign a DNR and post it where the EMTs will look for it—on the fridge.
6) A trained and experienced hospice provider will understand right-to-die issues.
7) Be sure that your local hospital has a copy of the Living Will and the DNR in his record, BEFORE it’s needed.
8) If you are his healthcare surrogate, and his Living Will states it, then there is no need to go to a hospital to die. It’s perfectly OK to die at home. A good hospice worker will understand this. When he begins to die, (in Florida) you are not required to call 911. Just let him die (on morphine administered by hospice under his doctor’s orders.

 

[notme]

The hardest part other than the loss itself is the feelings associated with just feeling helpless as you stand by and offer only palliative care. You don't need to call 911 at all--hospice will help your entire family through the process--but please rest assured, they will not allow him to suffer at all.

They don't use the morphine to "put him to sleep" -- it's to keep him comfortable and anxiety free and not gasping for air. Hopefully, you've been in contact with hospice by now and all gotten the support you need in this difficult time.

Remember--he CAN change his mind at any time. Definitely, a healthcare proxy needs done and a living will. It's his wishes that matter, as hard as that is for relatives to deal with.

I wanted my dad with me--I didn't want to let him go--but it was the best thing for HIM--and what he wanted.

 

[renraku]

Thank you all for your advice, I really appreciate it. I don't necessarily mean put him to sleep like euthanasia, but make it to where he wouldn't be gasping for air the whole time and awake in terror that he might not be able to pull in another breath. I've been there before for about two minutes when I choked on something once and it was a horrible feeling. I don't think he'll make it to that point because he's been a chronic smoker..for about the first two hours of every day he spends it coughing and hacking things up. Not like coughing a few times every ten minutes or so, but he almost literally spends the whole time coughing and hacking to clear his lungs of whatever damage that his chronic smoking has caused. They won't tell his doctor for some reason, I'm thinking that my parents (him and my mother) might just want it to happen like that rather than dragging it out another year with respirator/feeding tube/etc.

 

[Atsugi]

We use a CoughAssist machine for a few minutes once a day. It's just a breathing mask that you hold over your mouth and nose, and it pushes air into you, then sucks it out, so it expands your lungs and clears them out.

It might, after the first couple of treatments, help reduce the coughing fits.

 

[Miss]

I'm from TN. You can absolutely administer morphine to relieve "air hunger". The morphine won't put your Dad to sleep, the CO2 build up will. My mother died of lung cancer in 8/2009. She did not suffer for one minute from a feeling of suffocation. My husband plans to use morphine when the time comes. In the meantime, he is using a BiPap machine. This helps relieve the breathless feeling, too. We have a cough assist that helps clear his lungs so that he doesn't have a choking feeling. We also use the PEG for medications as swallowing pills is very hard for my husband. BiPap, Cough Assist, O2 and the PEG just increase the quality of life. Without them, there would be alot of suffering.