Feeling sad about my ALS patient - page 3

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,... Read More

  1. by   Destiny'skid
    Perhaps going in the room with the cna when she is doing his care and talking about what you do that works would help her... perhaps you have already tried this. It seems unfortunately there are some who don't have a very good attitude no matter what.
    I know its much easier for me to give higher need patients my time when we are properly staffed so I don't know if this is a factor as well.
    I'm glad there are nurses out there like you, keep up the good work!
  2. by   MomRN0913
    I took care of a patient with ALS in the ICU. He was there a long time before he died. He was one of the most difficult patients to take care of and not many nurses wanted to take care of him. His mind was there, he was trapped in his body, on a vent, orally intubated so there wasn't even lip reading.

    I took care of him a lot and he needed his pillow just right else he wasn't comfortable. He couldn't move ANYTHING. He trapped in his body. I learned to read his eye movements to get his positioning just right. Not many nurses had the patience to do that. Most would just fluff the pillow and walk away knowing he couldn't talk or ring the call bell. I just couldn't.

    It's probably one of the saddest diseases I've seen.

    Yes, him and his wife were " demanding" but for good reason. I just couldn't imagine.
  3. by   08RNGrad
    Such a terrible disease. You sound like such an empathetic nurse and I commend you. It would BREAK my heart to work with people who acted so heartless. I know it is hard work, but they are PEOPLE who have been cursed with one of the worst conditions out there. They have absolutely no control. As other's have stated, and inservice is needed...badly. Bless you for what you do.
  4. by   Spidey's mom
    I agree that more education is needed.

    We've cared for ALS patients as well. There is assistive technology in the form of computers where the patient can actually talk and communicate their needs. Also, surf the net!

    One of our patients was so delighted to be able to function, to ask specifically for her needs, and she loved to play cards on the computer not to mention follow the daily news.

    She got her computer and program from the ALS organization.

    In the "search" line of the link below, write "computer" and see what comes up.

    Homepage - ALS Association
  5. by   PinkNBlue
    Thank goodness for you. Truly.
  6. by   ayla2004
    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
  7. by   ekramona
    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.
  8. by   blondy2061h
    How blessed he is to have someone like you sticking up for him.