Is this the end??

[tiabye]

Hi - My name is Michelle and my sister was diagnosed with ALS April 2015. She seems to have got it pretty bad and drawn out. At first it was just her tripping a lot, then she would just fall and couldn't get up, couldn't get off the toilet or out of bed without help. As it got worst and worst over the year, then in April 2015 finally was able to diagnose her with ALS. She has gone from a happy smiling sister to one that can't even hardly shake her head yes or no anymore. She is on a bipap 24/7 since August. We were told then that she didn't have much time left. Here we are in Feb and she is still with us. She is miserable though. Can't communicate at all anymore, just will stare off into space , if she is awake. She sleeps like 20 hours a day. I work at her house so I can help my mom, her primary caregiver, when she needs it and just to be here. My Brother and Aunt came down this week cause she had a bad week last week and we thought that was going to be the end. Not sure how long they are going to stay though as she seems to have been stable lately. She has no quality of life left. She can't go anywhere and when she is awake she is miserable 99% of the time. I feel like its the end but her heart rate is usually around 80 and her oxygen level is 97% with her mask on. We even took her mask off for 20 min last week and she stayed about 95% the whole time. Is anyone in this stage with their PALS? Just would be nice to talk to someone who is going through th same thing as all ALS patients seem to show different signs at different times, their life span is way different with each patient! This is just a crazy disease that doesn't make any sense to me. How can some people be gone 2 weeks after they are diagnosed and then others 20 years!?
What else do I need to know?! What else can we do to make her comfortable?
Thanks for listening!

 

[Atsugi]

Hi Michelle, I 'm glad you wrote. Maybe some folks here can help.

When you say she can't communicate at all, do you mean she can't talk, or can she blink or move some muscle to answer yes/no to a question?

One thing that comes to mind is the staring into space. If she can't blink or move her eyes around, then she'll need some eye drops to keep her eyes from drying out painfully.

Is she getting anything for pain or anxiety?

 

[affected]

Play her favourite music softly in the background all the time.
If she likes candles, get them burning all around to provide atmosphere. Place some where she can see them - she may stare into a candle flame and find that soothing.

Do little mini massages on hands, feet, face - use lovely lotions or oils and just talk to her all the time - babble on about any memories of happiness, what she has meant to you, things that are happening with those she loves.

These are all things that just may break through to give her some comfort and peace inside - they don't demand anything from her, but give to her and you will find anyone choosing music, lighting candles, doing gentle massage will also feel more at peace.

If she loved books you can read favourite things to her.
If you have one of those electronic picture frames, or an iPad or even computer - make a beautiful slide show of things she loves and have it looping within sight.

Try to fill her with as many of things that have brought her joy and let her know she is loved as you can.

I hope you can find some comfort and peace in this too xxx

 

[tiabye]

Astugi - Thank you. I mean she used to be able to use her Tobbii but her eyes are not strong enough for that anymore. We ask her questions and she can barely move her head anymore to say yes or no, that is if she is not ignoring us, which she does a lot lately! No she cannot talk anymore. She cannot move any part of her body any more. We ask her to blink hard if she is saying yes since she can only move her head very slightly its hard to know if she is saying yes. It so frustrating not knowing what she needs or wants. She has been on her anxiety medicine for a long time now and she has morphine for the pain.

affected: talking to her about the good times, or showing her pictures just makes her cry, and when she cries she can't breathe, so we try not to bring anything up that will upset her. I bought her a sound machine cause she loves the ocean but again every time I try and play it for her she shakes her head no and cries uncontrollably. My Aunt sings to her and that makes her smile. I make jokes with her and she smiles at that. I try to be a goof and make jokes about us like the good ole days and she smiles at me sometimes and other times just stares at me like I am not even there! I try and play some music for her but she just will cry or shake her head no like she doesn't want to listen to it. I honestly don't know what else to do so that she smiles and doesn't cry cause when she cries, the mucus gets worst and then she has about an hour of trying to get it out and that wears her out.
I know its horrible to say but sometimes I wish she would just go to sleep and pass in her sleep. She is so miserable and no quality of life, but then on the other hand I feel selfish cause I want her to stay around longer!

 

[Atsugi]

We totally know where you're coming from, Michelle. Unfortunately, there's not any good way to say how long she (and the family) will suffer in this state. Some PALS have said that their quality of life is OK, despite being totally paralyzed. On the other hand, no one knows what they feel when they cannot communicate a simple yes or no to answer questions.

Recent research in Germany says that Totally Locked In patients can be taught to communicate using their brains. A special machine can read the oxygen usage in different parts of the brain, so a patient needs only to THINK yes or no.

The feeding tube is a big deal. It keeps her alive in this condition. This is why some PALS choose not to be fed. In fact, my wife, who was a medical doctor for 20 years, made it very clear that she wanted no tubes, no feeding, no drips at all. She even refused help breathing. She told us that whenever she needed air, we were to give her morphine instead, so she simply wouldn't feel any need for air. She passed quickly with very little time Locked In.

I wish you all the best that you can get. I especially wish for you and yours to find some comfort however you can.

 

[tiabye]

It would be great if there was a machine that she just had to think what she wanted to say and it would say it for her. She is in there, I wish that she didn't know what was going on so it would be easier for her but that's just not the case.
Last night was the first time and this morning the 2nd time that she threw up bile since being diagnosed. She spits up mucus all the time but never really throws up. Plus her stomach is so hard and round. She had a bowel movement Wed night for the first time in 10 days and then went some more Thursday. Her tummy looked better but now its back. We can't seem to get anything in her. No nutrition and we have given her yogurt but a little at a time, but that's when she get sick.
We have checked the tube and its working properly. Doctor said its working great too. So not sure.
Plus her legs and arms are so cold but she says she is not cold and actually hot. She always sweats.
My aunt and brother have to go home next Saturday. I am just starting to wonder now if they should or not. I guess time will tell.
Thanks for listening..

 

[KimT]

Hi Michelle,

See if she allows you to gently massage her feet and hands. The power of human touch is strong.

I have a friend who is nearly at that stage. She is on BiPap 24/7 but can still make sounds and use eye gaze. I visited her last month. She refused a feeding tube and was just skin and bones. It was sad but she wants to live on her terms.

If she will allow you to massage her hands and feet, use something unscented. I love organic coconut oil.

 

[Tedstehr]

I am so sorry to hear about this Michelle. It is heartbreaking for you and unimaginable for her. Did your sister ever talk to you about her feelings on being locked in?

 

[natasha]

I'm so sorry Michelle, it sounds like your family has done a great job doing all you can for your sister. I know it must be so painful for her and your family to go through this. I just wanted to remind you that you are not alone. I know caring for yourself right now might be the farthest thing in your mind but I'm certain your sister would want you to self-care too. So don't forget, or feel guilty, about doing so while you're also doing your very best for your sister. I wish I had more advice for your sister specifically beyond what others have said, but I do agree with the previous comments. Sending you positive thoughts.

 

[tiabye]

Thanks everyone. My mom does put coconut oil on her hands and feet, but she doesn't really like it. Just recently we realized that just touching her arm hurts her. Its like she is very sensitive to everything. So I stroke her arm and she cries cause it hurts. So I think that is why I am frustrated. Not much to do to make her feel better. My Aunt and brother want to do nice things for her but everything we try my sister doesn't like or it hurts her. I do try and take are of myself but these past few months have been hard. And Friday my kids grandma (their dads mom) passed away. Yesterday was viewing and today was burial. I went to viewing last night but couldn't bring myself to go to the burial today. I could hardly take being there last night, all I could think about is soon it will be my sister in that casket, on top of being sad to see their grandma in there, but I had to be strong and be there for my kids. They are older, 19 and 24 but my 24 year old son wears his heart on his sleeve and wasn't doing real well. I know they know that my sister is next and I am just hoping that its not anytime soon!
Tonight is rough as she is crying a lot so the bipap makes that noise - the alert - constantly. Do you all have that as well??