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Debs sis

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Jun 3, 2013
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CALS
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US
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Nc
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Huntersville
Hi everyone, my sister is one year into this disease and unable to move completely. Voice is gone, eats fAirly well. Some trouble with swallowing water and liquids. Having more trouble moving food around in her mouth lately, losing her tongue.. 😰.

We brought hospice in back in sept. She has decided against a peg or bipap. Doesn't want anything. The last time she was checked (in July) her breathing went from 73 to 62 in one month.

She sleeps for a good part of most days. I guess that's my question, I know I'm rambling. Just sad. Is the sleepiness part of the end disease? An indicator of the air trapped in the lungs ?

I've read people's posts here and am inspired by your courage. My sisters quality of life is awful, everything is hard for her, everything.....
 
Hi Debs sis,

so sorry about your sister, it's so hard to watch.

My PALS was such an active person, well he loved sitting about talking, but he was really so active. This has declined with his functionality, but not just because he can't function so well, he loses energy every month, fatigues easily and the last month or 2 has also started to sleep during the day quite heavily.

There are a few reasons, and others here I'm sure can elaborate better than I.

Breathing issues will cause fatigue, and CO2 build up cause drowsiness and sleepiness.

Weight loss will also cause weakness, fatigue and tiredness. My PALS is continuing to lose weight despite the peg because he won't really allow me to get extra nutrition into him, but I do get lots of fluids in.
 
Tillie is right.. CO2 build up will cause sleepiness. Since your sister wants no intervention it's really up to you if you want to have it checked or not. It could give you a feel for what the "timeline" is ... you may or may not want that.
 
How do they check that? A hospice nurse comes and checks her lungs but says they are clear. She is exhausted all the time. I don't know if this can go on for months, years like this? Pretty much her nightmare. So sad.
 
To check CO2 build up - so I've been told by an anaesthetist recently (I could be wrong, just sayin what he said) that to test this they need to do a blood gas analysis which involves taking blood from an artery.

It's an unpleasant procedure as arteries are deep, and it does hurt. I remember when I was a teenager (yeah long term memory is fine here, short term is questionable :shock: :razz: ) and had pneumonia they would do these regularly and I used to cry when I saw them coming.
I don't mean to scare you with that, but they seem reluctant wherever we have been to bother doing them.

Oxygen levels can be OK but the CO2 build up can be causing problems.

As I said though, the weight loss with my PALS is possibly a big part of his sleepiness, and also the fact that everything for him is such an effort. The more muscle he loses, and the more his neurones misfire, the more effort everything takes and the more his limbs appear to weigh. So small things cost him a lot of energy - like eating a bowl of breakfast.

I certainly can't answer how long it can go on. We want to know and yet we don't, it's an awful paradox. We certainly find watching the suffering nearly unbearable. I know how you feel, and I can only offer that you are not alone, and many CALS are having the same heartbreak.

One day at a time - it can sound glib, but for me it is the only way 'through it'.
 
My wife never slept a wink in the daytime while confined to a wheelchair.

Now that she is bedridden 24/7 , she sleeps a lot in the daytime.
 
The artery draw is the most accurate and very painful. however, there are co2 meters that can be used completely painless. one is a cuff on the ear, another on the finger. a good RT will have those.

BUT, if she wants no intervention, what is the purpose other than knowing? Sleepiness is a symptom of co2 buildup, the more it builds up the more they sleep. eventually... if she is having air hunger, that is different, but you did not indicate that.
 
Thanks for the insight. She is losing a lot of weight also, and everything is a major effort and has been since the beginning of this, it all moved, progressed very quickly.

You are right, since she doesn't want intervention there is no point other than understanding what's happening.

What is air hunger? She makes involuntary grunts and noises as we move her, we laugh about those but don't know what they are about.

I can't bare to think about her gasping for air.......
 
air hunger is a term for when the patient is gasping for air...they are unable to get a breathe and it is very stressful and scary. that can be relieved by low doses of morphine, which is something that hospice will do if she is struggling. the problem with morphine is it depresses the respiratory system as well.

my husband also makes noises and grunts, he says it feels good! I don't know, but we laugh at them too.

You are a good sister, and sounds like you love your sis and only want to make her comfortable. keep working with hospice, they are experts at that.
 
One blessing of CO2 build up is that they just get more and more sleepy...
Air hunger, which is when they are not getting enough oxygen causes anxiety and distress, and even hallucinations.

My husband makes a lot of noises - he says it is like his voice box involuntarily is involved in everything now. So he yawns with noises, movements and effort involve grunts and groans, and we too laugh at them sometimes.

Thanks Barbie for the info about non invasive CO2 measuring, I was very surprised when I was told that recently as I thought well if they can pick up oxygen levels by the finger cuffs, why not the CO2?

Debs sis, just follow your instincts on keeping her as comfortable as possible and let her sleep when she wants, you are doing all you can within her wishes and that is all that matters.
 
Thanks Barbie and Affected. Thanks so much. She has taken morphine and methadone for pain control but had to come off it due to side effects (specifically rigidity at night, unable to move her and also she gets the shakes with both those drugs.

Sleeping the day away isn't a bad thing at this point, it's better than suffering.

Hugs and prayers for all of you.
 
morphine and methadone together?

Are they giving her any pain control now?

I find watching my husband in pain one of the worst parts of this disease
 
No she started on very low dose of methadone and was working up, but the rigidity was horrid, stiff As a board. They switched to morphine, but the same thing happened. Now she's suffering while the hospice nurse tries to find some other drug. The ALS clinic said they don't manage pain, go to regular doc....really? That was at Hopkins....
 
No she started on very low dose of methadone and was working up, but the rigidity was horrid, stiff As a board. They switched to morphine, but the same thing happened. Now she's suffering while the hospice nurse tries to find some other drug. The ALS clinic said they don't manage pain, go to regular doc....really? That was at Hopkins....

Hospice will help manage pain
 
As someone who has had numerous arterial blood gas drawn I would describe them as uncomfortable within the bigger picture of ALS/MND. If you really want to know I would not dismiss the test based on potential pain to you sister. Just ask for someone experienced in drawing them.
 
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