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Pam Boone

New member
Joined
Mar 30, 2018
Messages
6
Reason
CALS
Diagnosis
03/2018
Country
US
State
Florida
City
South Daytona
My husband was diagnosed 3 weeks ago with ALS. He is declining very rapidly. Hospice is helping us. He is bedbound, unable to move any part of his body except his head. Urine is dark. They said his kidneys are the reason. Appetite is minimal. Speech is almost imperceptible. Coughing and choking. Making him as comfortable as possible with morphine, lorazepam and Oxybutynin.

The choking frightens me. What can I do?
 
Pam, I am so sorry you find yourself here. I am shifting your post over to the Caregivers section of the forum to ensure it gets as much traffic as possible and the many and experienced caregivers can provide support and advice.
 
Hi Pam, very sorry to welcome you here. That sounds like a rough deal.
It's good that your aiming to make him as comfortable as possible. Also good to have hospice for help.
The helplessness of watching someone choke and struggle is heartbreaking. No solid advice from me as I was the one asking the same thing last week.
Here's the link to my post that was followed by lots of good tips.

Does your husband have BiPap and cough assist three weeks after diagnosis? Is it a mixture of long diagnostic process and a super quick progression?
If you want you could tell us more about yourself and your husband for better understanding your situation and what you've already been through.
Please come here for any questions you have, ears to listen, shoulders to cry on. There's someone online anytime of day, we're all around the globe.
 
Thank you. I don’t know how to navigate this site.
 
Pam, right here, just unload. Tell us everything about everything as long as your comfortable doing so, and I'm sure other caregivers will share solutions of many kinds.

As for choking, it depends on the cause. If he is choking on his own saliva, then keeping his body a little less hydrated may help. Doctor can prescribe a med for that. If he's choking on food or drinks, then use a dropper to put Coca-Cola is his throat, bypassing the wind pipe.

Frankly it sounds like your PALS' body is starting to shut down. Dark, smoky or chunky urine indicates organ failure. I don't know what your PALS wants or what his arrangements are for trach, vent, IV, etc. For my PALS, she asked us to keep her morphined up. Whenever she couldn't breathe, we gave her morphine instead of air. She showed no indication of fear, pain, or any kind of suffering. Within a week, her breathing and heartbeat stopped.

Again, I don't know your situation, but I hope this helps somehow. Dying is tough. Helping someone go through the dying process is tough, too. My goal was to ensure she didn't have pain or fear during the last days, and I think I succeeded. Good luck.
 
My husband had had balance, falling and legs problems for a year but was in denial of ALS suggestion by his neurologist. Just a side note: he was my ex husband until yesterday when we were remarried.😀❤️😀 we had been married for 22years, divorced 2years ago and yesterday made it all right again.

I found him in his apartment sitting in a chair, barely able to walk with a walker. He said he was waiting to die. I took him to my home and he will stay here, nowhere else.😀

The disease has progressed so quickly and I am sad and frightened. I have a wonderful family and an awesome God so I lean a lot on all of them. I am 76 and Bob is 70, an Air Force vet and he did serve in Vietnam Nam.

That’s us.
 
Thank you, Mike. You helped me so much.
 
Pam. Is he getting veteran benefits? The VA should have FILLED your house with comforting equipment, and should be mailing him significant checks each month.

This matters. And as his spouse, VA benefits for ALS could be a very big deal for you, too.
 
Very sorry, Pam. What machines for breathing and choking does he have?
 
Oxygen was ordered and delivered today. Also medication for choking is on the way.
 
Just filed VA papers on 3/20 per advice from Hospice. Apparently it takes up to 4 months to process. He no longer needs any equipment. Just comfort meds from Hospice. Mike, I am so sorry for your loss. Your message was so comforting to me.
 
Pam,

Oxygen is usually contraindicated in ALS because it isn't a lung issue. The breathing issue is because breathing muscles are too weak to get rid of the CO2. That's why a BiPap machine is used. Is he on a BiPap breathing machine?

Who is his neurologist? I live less than 10 miles from you. If he needs a BiPap machine I might be able to help.

I'll be back at around 9pm tonight and if you want to talk, let me know.
 
Pam, I see that you're still online. I'm sending you a private message.
 
Pam I am so sorry to welcome you here. However as other have said you will find all the help you need. Does he have a suction machine so you can suction the saliva/mucous from his mouth, that can keep it from going further back and cause choking. It will be a relief of sorts.

Hugs to you as you navigate this and in a huge hurry,

Sue
 
Pam, please look at the top right of this page to access a private message. Just hit the blue "Private Messages" link under your name.
 
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