This weekend was heartbreaking for us

I’ve been trying to think about what to say about this weekend but my heart is hurting. Seeing someone diminish so much between visits is hard. I was just there in January and 4 months later the changes are enormous. M has gone from being at home and being able to talk and to move some things to 2 months in an ICU ward with a trach and only able to move one foot a little.

I can lip read some people and I’ve been getting better since I started to go deaf myself. I’m coming to realize after this weekend that maybe I’m not reading lips as much as being sensitive to their surface thoughts. I could hardly read M at all because she was so shut down and angry. Of all of us she was the most extroverted and talkative. And now she is confined to a bed flat on her back, dependent on people for even scratching an itch on her nose. She gets mad and frustrated when we don’t get it and I don’t blame her. I’d be mad too. I also think she was mad because we were out and doing and she was shut in a hospital because Di and I were trying to show her pictures of around their property and of the gardens we went to and she was shutting her eyes like she didn’t want to see them.

ALS is the worst disease it has been my misfortune to encounter. With my parent’s dementia and other ailments, they weren’t mentally there and could move if they wanted to. With my brother’s cancer, he went quickly and had all his faculties, even if seizing to death as a lot of Gliomablastoma patients do but ALS robs you of everything but your mind. That to me is the cruelest thing of all.

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