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whimsy_1971

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My husband was diagnosed with ALS Oct of last year. He has had a rapid progression. He is terrified to go to sleep, he is afraid he will not wake back up. He will sleep while someone is up and keeping an eye on him during the day. The problem is, is that I need to sleep sometime too and Ive tried to get on is schedule but he knows if im trying to lay down as he gets up and starts moaning, and the touble starts again.

We have tried sleeping pills, morphine, and lorazapam (misspelled Im sure) but he fights it all night long. He is still having a difficult time choking on his secretions even though he has been on pretty much everything to help, he cant have his head to much forward or to far back as it causes him great difficutly to breath. He is exhausted, and so am I. I

He is constantly asking for me to help him because he cant breath and I dont know what to do for him anymore. :confused::cry::cry:

I will take any advice. How can I make him for comfortable during this difficult time.
 

hopingforthebest

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prays for you Christy!

Christy-

Getting off forum to pray for you and your husband!

Please talk to your nurse to reach out for some help/relief for you to get some rest!


Patty
 

andyvaughn

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Christy,
You have to get help in the house.. what insurance do you have? Is your husband on bipap? Does he require suctioning at least every 2 hours? If so, these are considered "skilled" needs, even if you don't have shift care as a benefit, it typically can be arranged via a benefit substitution. If you have private insurance, please, call them first thing Monday morning, ask to have a case manager assigned IMMEDIATELY. Tell him/her what is going on, be sure to tell him/her that he requires round the clock suctioning, has respiratory compromise, (these things qualify you for a skilled person - RN - to come to your house) and set up shift care ASAP.
If you don't have this option thru insurance, is it possible financially for you to hire someone to sit for 8 hours at night? You have to get rest too...
I can't imagine how scary it is for your husband.. and for you. What does your doctor say? There has to be some way for you to get help in the house.
Is he on Bipap? Maybe this would help him if not?
Please Christy.. take immediate measures to get help in your house. If you want help navigating insurance you can email me your number, I will call you. You can't do this alone anymore..:cry:
Andrea - wife of Pals Jim
 

Al

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Hi Christy. I'm on a Bipap because I can't breathe when reclining. Before the Bipap I slept on my side and this helped with breathing and drainage. The Bipap can dry up my mouth pretty good even with the humidifier. I use Ativan for anxiety at 2mg. Some nights I need an extra 1mg if I'm real antsy. Hope you can get some help.

AL.
 

whimsy_1971

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Andrea

David just got the bipap yesterday and I am trying to get him to use it a little at a time. He doesnt like it and I heard it takes some time to get use to

Ref to the insurance we do have blue cross blue shield of Il and medicare. We are currently on hospice care though so the insurance pays them. They come in about 3 times a week to check up on him and see if we need anything and say to call if anything is needed and then they leave. Maybe I should start calling them every night when this is happening.

I did call blue cross to see what the skilled nursing covered, Im not sure what is best to do stay on hospice and see if he can be skilled or get off of hospice and try to get him skilled by the Dr.

The local Dr. Dave goes to is over hospice as well so it's not like he be going to a different dr unless I could get the ALS clinic to skill him.

Not sure, Im just going to have to step forward and say again that I cant do this by myself anymore. The last time I did this they Said I had 3 options. I could hire someone to come in at 100 dollars a day, put him on the 3 rd floor of the hospital for the terminal ill patients and pay 120 a day out of pocket oh ya there is a waiting list, or look for a nursing home. He could not go to a nursing home he requires to much care. Oh ya they did say that after he was placed some where we could apply for medicade and if we qualified then they would pay for his care but they would take his pension. So Im thinking OK.
 

olly

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hi christy

i am so sorry for what you are going through right now,it sounds like a nightmare.
there,s just not enough care and help available unless you have the money to pay for it,but that is so wrong.
i did read your other thread and you got some good advice on finding more help,i hope it helps.
i wanted to reply to this one about your husband being scared about sleeping.
i am no way as bad as your husband but i can understand a little how he feels.
i can only sleep proped up with 5 pillows or else i can not breathe and choke in my sleep.
it is very distressing and frightning,when i have had a bad scare i dare not go back to sleep in fear of not waking up.
it will probably take a little time for him to get used to the bipap,i really hope it helps him.
i am clostraphobic so i don,t know how well i could cope with it,my pillows are ok for now.
i just wanted to let you know i understand.
i will keep you both in my thoughts and prayers.
godbless.
caroline
 

CindyM

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Christy-I just read the book "Share the Care." It was a quick read and even at this stage, when every spare minute you have is spent focusing on David, somebody close to you might be able to implement some of the ideas.

The quickest way to do this is to find one friend or family member who will beat the bushes to find a dozen or so folks willing to each give a couple of hours a week. This friend acts like a coordinator, scheduling people to do stuff like get groceries, mow the lawn, vacuum the rugs, so on. You make up a list of chores, then hand it over and let them get to work.

Note we are not talking about care giving duties, but you could ask your coordinator to see if people in the group want to sit by David for a bit while you nap. And having people do your household chores will free you up some.

The actual system for a caregiver group is not this simple- I thought you might need the bare-bones version right now. Plus you only have to ask for help once. That's why you have a coordinator. Asking is really hard and nobody likes to ask for help. But turning it over to a coordinator/friend allows you to take care of David and allows the rest of your circle to find a way to reach out, which they surely wish they knew how to do.
Hugs, Cindy
 
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