Feeling sad about my ALS patient - page 4

by ekramona 5,901 Views | 33 Comments

I have a long-term care patient with ALS who is paralyzed from the neck down and on a vent. He is very particular about his positioning and has a lot of requests. He does not have a speaking valve, so to understand him you have... Read More


  1. 1
    Thank goodness for you. Truly.
    ekramona likes this.
  2. 1
    Ah als is called motor neuron disease in the UK. Know I know what you mean. Very hard for the person.

    Sent from my GT-I9300 using allnurses.com
    ekramona likes this.
  3. 0
    I just logged on recently after not being here for a while and I had no idea so many of you responded to this post. Thank you so much for your insight and encouragement. I am still caring for this patient and things have leveled out fairly well for all involved. I received criticism from my coworkers that I was "spoiling" him, but I kept my head down and continued to provide compassionate care for him. Eventually the CNAs got used to him, and stopped complaining as much.

    Although I tried my best to keep him comfortable, I found that it was not always practical to attend to his every request. One day I was very busy and he became angry with me that I wasn't helping him to his satisfaction. I stopped and had a conversation with him, explaining the perspective of the nurses and CNAs. I told him honestly that I wanted to help him as much as possible, but that I could not offer him a disproportionate amount of my time. He began to cry and admitted that he was very scared.

    He has learned to trust us and we have all learned to communicate with him. We alleviate his fears as much as possible by talking to him and reflecting our understanding of how he feels and what he needs. On days when we are working short or are very busy we let him know that and ask him to work with us by only asking for the most important things. He cooperates with us, trusting that when we have the time we will attend to his other needs as well.

    One thing I learned from this is that it is important to work with my CNAs. I didn't like their attitude and they didn't like my approach, but we both kept doing what we were doing and somehow met in the middle. If we had fought about it this would have turned into something much more difficult.
  4. 1
    How blessed he is to have someone like you sticking up for him.
    ekramona likes this.


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