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Erika

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My mom has been sleeping most of the day since september 15 after a crisis with secretions and saliva where we used the coughing assist. She was able to stay awake for about the time when my brother came to visit about 10 days ago. :) But every day after that, its harder and harder for her to wake her self up. She didn't remember wether she said bye to him the day he left or not.

She's showing signs of confusion, disorientation, agitation and visual and auditory "hallucinations".
Phisically, all she has left is a little movement of her left thumb and pointer but almost no strength. She can move her head. Her bottom continues to be a concern for bed sores. Two tiny spots of skin begin to look a bit raw. The weekend nurse went to see her today to see of she needs bandages to help stop the skin from breaking .

Her speech is so very hard to understand. Just the other day, she told my sister we both used to understand her,* and later only she could and now even she can't understand what she says. She cried. We all did. This is by far the hardest part, since she isn't able to use the tablet because of dizziness and just too tired to focus on the words and letters.* So we use her cell phone to spell out the beginning of words sometimes , but it's mostly a very frustrating guessing game.* Her tongue has gotten smaller and seems to only be able to move the left side when she tries to speak.

And when she cries, there is no sound to her pain/frustration/sadness. I feel like screaming to the top of my lungs for her, like that care taker in the movie,"You are Not You". Her lips and facial muscles are weaker too. And yet, when she smiles, she lights up the whole room. I cherish those moments when I see her in that smile. ♡

Her digestion seems to be coming to a stop. Shes only taking 1-1.5 jevity fomulas a day at 30-35cc per hour. Twice, her formula has come up and given us a scare as she almost choked in it. Both times, have been before her firt formula of the day, which can only mean she's not digesting as well a not at all anymore.

Also, her breathing is shallow and at time it seems like her windpipe collapces and she can't breath. This one is so scary, especually for my sister who is there 24/7 and is the one to see her lips turn blue and her eyes so scared in the middle of the night. We just pray this isn't the way she goes since it is her worst fear. Pneumonia is also a concern, so we are extra aware of any changes that may point in the direction.

I hate seeing her*like this!! I wish i could make all this go away.....

I've been putting off writing/venting about her progression. It's as if writing about it will "jinx " whatever time we have left with her. Also, I*wasn't* sure how or where to begin, with soooooo many things and and emotions going on as you all know. I hope it make sense.

Thinking of you all and wishing you a restful weekend.
-Erika
 
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affected

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I'm really sorry Erika, it's a hell disease xxx
 

pittsburghgal

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I am so sorry, Erika. It is truly unbearable to see someone we love go through this. Wishing you comfort and strength.

Sharon
 

Narrowminded

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Erika I'm so sorry for what you are facing right now. Is she using a bipap? Some could be related to a build up of CO2, but most is probably just the disease progress. Praying for you.
Hugs,

Sue
 

Nikki J

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I am so sorry. This is so very hard. Just concentrate on loving her. Hugs and strength
 

soonerwife

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So sorry Erika. Watching this disease progression is horrible.

I love how you said even with your mom's facial muscle weakening, her smile still lights up the room. This make me smile.

Your post made perfect sense, I can hear your pain as I read it.

I am praying that your mom finds comfort and peace and no suffering.

HUGS friend!
 

Erika

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Yes, we think it's her co2 as well Sue. The RT has been here to adjust and teach us how to adjust her bipap a few times. Shes been great. But mom just doesn't feel any benefit and only becomes more agitated when she tries it. We had reminded her of it and when she felt air hunger would ask for it. She never used it for more than 5-10 minutes. Now we don't even try to have her use it, because it only stresses her out. So we keep her comfortable with the morphine and lorazepram. Lorazepram seems to be what is helping the most right now.
 

affected

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Keeping her comfortable is more important than how you do it - whatever is a comfort and not a cause of more distress is the best strategy. Many hugs to you all xx
 

4tloml

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Heartbreaking to hear the pain you are in. The love you express is as palpable as the pain, though, and that's the best and most pure thing you can give your mom.
 

Erika

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She hasn't fully woken up today. She didn't have any formula last night and this morning only water. She said she felt it going up her throat and to wait a little while. She seems a little agitated/uncomfortable at times but for the most part she'd just resting. At leat she isn't in any pain....
-Erika
 

affected

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I'm glad there is no pain.
Her digestive system is probably shutting right down now.

Lots of love and whatever meds she needs, and I hope you can find peace being with her xxx
 

soonerwife

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Hugs Erika! I hope your mom is comfortable and you all can just be with her.
 

Erika

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* She just had another phlegm/coughing crisis. She's doing better but is already so weak and tired....how will this episode leave her?* :( Each time it's harder and harder to help her clear out those secretions even with the cough assist and suction machine.

I hate not being there to help. My daughter and I are trying to get rid of a sore throat and cough ourselves.* I just wish I could be there more.* This attempt to balance family life and "fill-in" care taker is overwhelming sometimes. Especially when I feel like I'm not doing either one right.
At least I'll see her again tomorrow ♡ Thank you all for your well wishes and words of encouragement. :)
-Erika
 

Narrowminded

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Praying for you Erika. Many huge hugs as you go through this.

Hugs,

Sue
 

Erika

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CALS
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My mom hasn't been hungry for a while now. But this past couple of days, she has been saying that she wants formula because she's hungry. She also says she wants to be strong for when my brother comes this weekend. We're afraid she just wants milk because she thinks she will feel stronger, but she isbasically no longer digesting and the milk comes up her throat and chokes on it. What should we do? We hate to think she really is* hungry so we have spread her one can into tiny amounts throughout the daybecause she can't take more a day. This morning she said she wanted milk but she's also feeling dizzy and nauseous. We're afraid if we give her too much milk it will only make her more uncomfortable and will cause her to throw up and risk aspirating or choking on it any suggestions?

Moments of air hunger and confusion continue to increase, we'll see what today brings.
-Erika
 
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