The Only working hand getting very stiff

[Niamh1]

Hi first time on a forem my sister has MND/ALS. Was 3 years diagnosed last October. Her only remaiing limb that works is her right hand, she has no arm movement just her hand, her fingers are so stiff, she can hardly move them . her breathing is very shallow, we use cough assist machine every few hours she is in bed 20 hours a day. Is the end near. Or will she be totally paralyzed for a year or more, I'm panicking will I go to her room one morning g and she will be gone ? I don't know what to think.

 

[lgelb]

Very sorry about your sister, Niamh. Is your sister on BiPAP? Does she have a feeding tube?

Her breathing and nutrition/hydration are the major answers to this question, along with her will to live. This would be a good time to ascertain her wishes as regards quality vs. quantity of life so as to be able to act on them later, if you are not already confident that you know her preferences.

Best,
Laurie

 

[Niamh1]

Hi, she has a NIPPY machine, but she won't use it, doesn't like it, she had no feeding tube. She's refused all of that, she want no invasive intervention, , it's just her breathing is so shallow, only little breaths, she has a lot of phlem, we clear it with the cough assist machine, her swallow is good, she is fed normal food, , she has advance care directive completed, no intervention is her wishes. I'm just scared I'll go into her room one morning and she'll be gone, do people just slip away at the end or will we know, will we have warning. She can hardly talk as she runs out of breath.

 

[Niamh1]

I'm sorry, I know I'm panicking a bit, its just she's had a really bad couple of days, she has no chest infection, just so short of breath. She has lost some weight lately, I think her spark has gone out of her, she's very quiet.

 

[Nikki J]

I am really sorry. Does she have a nurse who visits ( hospice or other). They might be able to tell you better. Sometimes PALS do slip away even when they seemed to have been reasonably stable. From the PALS side that is not a bad way to go but of course it would be a shock for you. I am sure you are already doing this but make an extra point of saying something loving, giving her a hug or kiss etc each day. Sending you love and strength

 

[Niamh1]

We have a palliative care team, a palliative care nurse, Deidre. She said to up the morphine dose, that was yesterday, but its still hard for my sister to breathe, I don't want her to be like this, its so unfair. Maybe it's just s bad few days, I know it's harder for my sis but this is so cruel, I feel useless.

 

[lgelb]

Since she is not using the breathing machine, she probably will need more and more morphine so as not to feel uncomfortable. At some point, she will not be able to move enough air to sustain her life. I would guess this is a matter of more like weeks than months but the nurse can see more. It is a cruel disease, I cannot disagree.

As Nikki says, make your time with her count, express your love, wish her only peace, and encourage others to do likewise, and you will have no regrets.

 

[wishmobbing]

So sorry to hear about your sister and your sorrow about this. You're doing great, you're there for her, yor make sure her wishes are followed, you help her with the cough assist. Feeling useless is one of the defaults of a CALS, I guess. I feel useless a lot of times even though I rationally know I'm helping and just being there is good. You're doing everything there is to do, please don't feel bad. It is a cruel disease.

If she slips away in her sleep I could imagine that it would be very hard for you to find her in the morning. But there are so many worse scenarios than going to sleep and not waking up.

I'm glad you found this place and we'll be here for you. Just write whenever you have questions or you just need to vent.

 

[Niamh1]

We lost my sister, she was brave, i know its a terrible thing to say , but i think it was better for her, she went so quickly, i knew she was leaving us, i could feel it, but we held her, and it was peaceful, i wish everyone here well xx

 

[Nikki J]

Please express your condolences here https://www.alsforums.com/forum/memoriam-memory/41976-niamh-s-sister.html