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nwafriend

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Jan 21, 2008
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Loved one DX
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Arkansas
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Centerton
I have posted very little since my mom's diagnosis in January '08. She has had such a fast decline, and I have been needed a lot with helping out my dad, so the computer is last in my life. I was hoping someone can help give me a prognosis on our situation or maybe a glimmer of hope.

My mom has only eye movement left. All other muscle use is gone. She uses the Tobii computer to speak (it follows her retina in her eyes.) She receives medication and nourishment through a PEG tube only. She has been using the bi-pap for about two months now, but only for two hours in the afternoon.

We went to the pulmonologist yesterday and received more bad news. Her vital lung capacity is now down to .53 liters which charts her at 16%. Her norm should be 3.37 liters. Her breathing has become very labored. Her exhale is the hardest for her and is very shallow. The pulmonologist said she must wear the bi-pap all night now to get any marked help from it. I knew when he told us this fact that my mom would not give in. Sure enough, we got home and she said, "No bi-pap at night." I think she is tired of living in this state. I guess I can't blame her, but I also don't want to see her suffer without the assistance of the bi-pap. She had already made the decision not to vent, so I guess she figures why keep trying.

I guess my question is how quickly will we see her go down with these low numbers. I know that eventually the bad exhaling will catch up with her because she can't get the carbon dioxide out.

My dad finally called hospice this week. I think it will be a big help to have them involved.

Any help or advice would be greatly appreciated.

nwafriend
 

CindyM

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Hi. I am so sorry to hear about your Mom. This is a big load on both you and your Dad. Hopefully Hospice will be able to help both of you and help make her comfortable. My thoughts are with you! Cindy
 

Al

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On
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I was going to suggest Hospice. With numbers like that and a refusal to use the Bipap it will only be a matter of time. It's most difficult to put a time line on how long things will take. Hospice can help make her breathing not so labored but the drugs can sometimes accelerate the passing on because they can depress breathing rates as well. Sorry that there is no clear answer for you.

AL.
 

Debbie53

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Very sorry for what you're going through and I can relate somewhat. My mom just died 3 months ago of Pulmonary Fibrosis, so it was the lungs that gave out with her, too. Now my dad has what's probably als, and is pretty darn helpless. Over the past 2 yrs. it's been moving him, moving her again and again, and watching them both go downhill and now he's snowballed. It's damn hard! Some people really do understand!
 

CindyM

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Wow, Debbie! Life sure throws hard balls at you. I am sorry to hear this. Cindy
 

brooksea

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Hey Ark Friend!

I'm so very sorry about your Mama. I will be thinking of you and your mom in the days to come.

It sounds like you are already very educated on the process of ALS.
 

cbrown7777

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south carolina
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charleston
Hospice will be and is wonderful. They will be a great help and comfort. My mom did the SAME thing - no bi-pap at night and eventually, no bi-pap period, just oxygen thru nasal pillow. If she begins to show ANY signs of distress, the hospice nurse will step in to help her, whether it's administering meds or whatever. She's not going to suffer, you won't let that happen and neither will hospice. It's what they're there for, you will see. My prayers are with you.
Carrie
 

patricia1

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Joined
Sep 18, 2006
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PALS
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7/1999
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newjersey
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lopatcong NJ
This The Time You Have To Make Your Mom As Comfortable As Possible

Hospice Is Wonderful.thats The Best You Can Do For Her.

I Know Its Hard To Let Go But It Sounds Like It Time

God Bless

Pat1
 

JACKIEMAX

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I know this is a very difficult time for you and your family, but from what
I am reading between the lines of your post, your mother is ready to
go to a better place. She knows the bi-pap is what she needs to breathe
better at night, but chooses not to do so. She is pretty much saying she
is so very tired of living in this state she''s in.

My husband can move his arms and shoulders, but not his legs. He can
eat if he's fed, but takes ensure through his peg tube, also takes his meds
that way. But the bi-pap is all that is keeping him alive, and he knows it.
He feels if he unplug the bi-pap it would be suicide, and that that would
be unacceptable to God. There are several ways to look at that decision,
but the choice is his, and his only - just as the choice not to use the
bi-pap at night is your mom's. Just respect her wishes no matter how
difficult it is for you.

All of here on the forum feel your pain and I agree that hospice is the
answer for you at this time.

Jackiemax (wife of pals)
 

Winnie15

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Jul 22, 2008
Messages
23
Reason
CALS
Country
PI
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PI
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PI
the woman i care for can only move her eyes and is bed ridden.
She has a trach and is vented, and has a feeding peg, apparently she could go on for another 6 -10 yrs like this.
No life for her family, but she feels she has quality of life cos she can see her kids grow up ...they are under 5.

Hospice is an awesome organisation, and as the others have said would make your mum's last days comfortable and pain free .. How I wish there was no sickness is this world

sending you a big big hug
Winnie
 
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