Erika
Distinguished member
- Joined
- Sep 21, 2016
- Messages
- 175
- Reason
- CALS
- Diagnosis
- 06/2016
- Country
- US
- State
- Arizona
- City
- Mesa
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
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
Last edited by a moderator: