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PamB

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Joined
Nov 10, 2006
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10
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PALS
Country
US
State
Medina
City
991 Bayberry Dr
Hi,
My sister has had ALS for 2 years and she is totally immobile and she recently lost her ability to make any noises. We are lucky that she has had her voice machine and is proficient at it at the present time.
She is very restless at night and has to be positioned many times during the night. Her breathing was at 30% in July and now the nurse says her breathing is very shallow. Has anyone experienced this. Is this the beginning of the end?

I took care of my sister for 6 months and I got ill myself and had to come home to my family. She lives 1000 miles away from me. We hired full time care givers at this point to take care of her with family coming in daily to check and friends to check on her well being. I don't know what to do. I feel that I should go back to take care of but I don't know if I can go away from my family for three to four months if that's the case or would it not be that long? (MY children are 23, and 25 and my husband has been wonderful to let me go away for so long, and I am the caregiver to my mother in law who has lived with us for 6 years (she is 84). I just feel torn.

Does anyone know how this shallow breathing effects the patient? I know my sister has had a great mental attitude for the last year but I am told she is getting very cranky and is not herself. I can't imagine the frustration and I think she has done wonderful up until now.
Do you know what I should do?
Thanks for listening
PamB
 

hboyajian

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Oct 31, 2006
Messages
267
Reason
Lost a loved one
Country
US
State
Washington
City
Vashon
Hi Pam, Yes, shallow breathing can indicate that her breathing is more severely compromised than before. Is she on a Bi-pap machine to assist with breathing? If so, adjustments may need to be made. This was never done very well for my dad, so I do not know the details about it, but other people have posted that a complete sleep study and careful adjustment to make sure the machine is helping optimally can make a big difference. A blood gasses test is critical to determine if her lungs are getting enough oxygen in and effectively getting the carbon dioxide out. If the carbon dioxide is rising, it can cause disorientation, exhaustion, and possibly explain the change in her mood or effect her rationality. If this turns out to be a concern, you may want to go see her again very soon, because without intervention, she may have limited time left.
 

PamB

Member
Joined
Nov 10, 2006
Messages
10
Reason
PALS
Country
US
State
Medina
City
991 Bayberry Dr
Thanks for your information

My sister does have a bipap machine but she does not want to use it. She doesn't like anything on her face. So maybe I will go visit next week. thanks PamB
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
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Tomball
Hi Pam. I am so sorry dear that your family is going through this. My son passed 15 mos after diagnosed. When the end came close his breathing changed, and yes he had no volume, bless his heart. I didn't know that the end was near then. It shocked me, when it happened all of a sudden. My angel passed at home. It was so hard on us. His passing, the hearse coming over to my house to pick up his body. Dear, let me tell you, (I wanted to die!) My baby is resting in peace. Let me tell you sweetie, go and be with your sister. I am sure the time is close, that's what the medics told me when my son's breathing became shallow. I'd go now. May God bless you. Let us know, please! Prayong for you and your family.

Irma
 
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