Things have been tough lately. Mom's troubles with swallowing is worsening. Her balance is off and if you hold her hand you can feel the muscles deteriorating. I hate ALS. Now that I am not working, the disease is effecting me. I want to be happy for one whole day, that's all but this disease fills you up with anger and sadness. Now this is coming from a caregiver, not a patient. I can't imagine how my mom feels. I see her tears, I listen to what she says but what she thinks about is beyond me. This morning she showed me a video on her phone of a beautiful sunset on her way home from the Mayo Clinic recently. In the video she heard herself speak and she cried, so hard. It sounded much worst than she does in person I must say but I can imagine how she feels hearing herself. She sounds like a different person. Before I forget, I mentioned how she had to visit the Mayo Clinic. She had issues with her feeding tube so they replaced it and not even two days later she had to go back up because the tube got clogged with her medications. Otherwise, mom has been doing well with eating. Not great but well. I would love to see her consume more.
I apologize I haven't written as much. I thought this would help me but it just upsets me more. I want a cure. I want a miracle.
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