ALS Bulbar On set .. Moms O2 level is low.. Any help?

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Darlenne

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Dec 20, 2013
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BRA
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SAO
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SP
My mom's O2 levels are very low. It keeps to as low as 83 and the max is 89...She's on O2 2% overnight , but lately needs it 24h/day...She refuses to use bipap.. I try everyday and max I get is 15 min ( when I'm lucky)...she has bulbar als. how bad is this o2 level? Im very worried..Shes restless at night and says she can feel the end coming...it is so heartbreaking to watch she struggles all the time ... What should/ can I do to help her?
 

branrick

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Dec 2, 2013
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10/2013
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mi
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All you can do is try and encourage the bipap. But honestly my brother had this restlessness and the hospice nurse said it's when people are nearing the end. Have you considered hospice? Morphine will make her more comfortable and it helps them breath better. That O2 level is very low. I'll pray for you-has she stated her wishes? Just honor what she wants and try to make her comfortable. It's the hardest thing I've ever been through. Take care
 

mrvaughan

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05/2000
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Hello Darlene,
Those levels are very low, and I am sorry that you are seeing your mother suffer. I don't have the answer for encouraging the bipap, but maybe she has made up her mind that using it is just going too far for her. I would say to not push her to do something she doesn't want to do, the more you are supportive, the easier it will be for her to feel at peace with her decisions. God Bless you and your mother.
Mary
 

Barbie

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Hi Darlene, I know that you are caring for your mom alone. Can you talk to her doctor tomorrow, perhaps there is a palliative or Hospice program where you live. Her O2 is very low, and she may be entering the final stages as she says. try not to stress to much at this point with her using the bipap or other things, concentrate on keeping her comfortable and relaxed. A hospice program is designed to keep the terminal patient comfortable and at easy.

I am so sorry, she has come so quickly to this point. you are a great daughter and I know she loves and appreciates you.
 

zoohouse

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Jan 14, 2013
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Those levels are low and O2 will not help if she can't breath it in. Morphine in low doses can help quite a bit, but is just a comfort measure. I am so sorry that this is so difficult, and agree that hospice would be helpful.
 

Darlenne

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Dec 20, 2013
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Loved one DX
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BRA
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SP
I hope you all had a Peaceful new Year!

It's very hard for me as a daughter to see her crying just from hear the word Bipap... and like I say it won't cure my loved mom..( I understand it's meant to give some sort of comfort) but in her case it's a nightmare :(
Hospice program? I'm not sure.. We live in Brazil.. We have a palliative doctor who sees her once a month and the nurse visits her twice a month at home...is that the same thing?

She was always a very brave woman.. It hurts a lot to when she writes that her end is coming.. But it hurts even more to watch her suffering the way she's ... I feel helpless..there is nothing I can do to help...


Thank you all,
_______
Dar
 

Caleighfaith

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Joined
Jan 1, 2014
Messages
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Loved one DX
Diagnosis
11/2012
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St
State
California
City
Modesto
Hello Darlene-
My father surrender to ALS-Bulbar on Sunday. I sympathize with you. We were asking the same questions. He would not use the bipap as it made him feel claustrophobic. Lucky if he got in 15-20 mins a day. We also used an nebulizer with Albuterol a couple times a day to unsure that there were no mucus plugs restricting airflow. A liquid expectorant to thin secretions in airways or lungs and the suction machine to clear anything that he could get up. Also moved his oxygen up to 4. Realizing the lack of breathing comes from the diaphragms inability to function with time, we added Ativan. It seemed to help keep his anxiety down and loosen the chest muscles that can tighten when breathing becomes a struggle. Hospice was the best thing we did for him. Wish we would have called them in sooner. They did prescribe methadone as they believe it helps patients with ALS-Bulbar breath better without suppressing the breathing which is what morphine can do. Their both great comfort drugs. Sending you positive energy. Hang in there. ❤
 

Darlenne

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Dec 20, 2013
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Loved one DX
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BRA
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SAO
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SP
How does the hospice program works where you live?
I'm not quite sure if it is the same...but from what I googled its way better than where I live...
 

Caleighfaith

New member
Joined
Jan 1, 2014
Messages
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Loved one DX
Diagnosis
11/2012
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St
State
California
City
Modesto
I'm in California. I'm not sure how other states run Hospice but I would hope its the same. My father had healthcare insurance of his own. He did not have to use it for hospice as its funded through the government with no person denied regardless of income. It was ALL free. So long as her attending physician declares her illness terminal with no chance for recovery, she will be excepted into hospice. Their mission is to provide comfort opposed to cures. ALS has no expatriation date to gauge as one might be able to gauge with someone such as a cancer patient. For my dad they focused on breathing treatments to keep him comfortable. When the machines no longer helped, they moved on to medications that sedated him. They sent out a person who bathed and helped with hygiene 3 days a week. They assigned him a dr who comes out as needed to monitor their condition and see if a change is needed at any point to keep them comfortable. Once that is established, a RN Nurse was assigned to him as well. She was set to come out once a week. As his symptoms progressed she came often, as much as daily. There was no limit, just what was needed at anytime to keep him comfortable as that's their mission. When you use hospice, you are asked to not dial 911 in an emergency situation as they have their own ambulance and hospital. Going into this commitment seemed scary at first but I am so happy we did it. They are in my opinion the best group qualified to handle a patient who is terminally ill who has limited options for treatments as is with an ALS/Bulbar person. Message me ANYTIME at [email protected]. I just so happened to find this in my junk mail folder. I don't have all the answers but I'm sure their are lots of things we could help troubleshoot as you journey through this. My dads been gone a week now. Very sad and yet happy to see him finally put this horrible disease behind him.
 
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