Feeling sad about my ALS patient - page 3

by ekramona 5,958 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. 4
    I have had a lot of experience with quads, ALS, etc. I dread them, I find out as soon as I can what things they are picky about and how they want "it" done, it meaning everything, and whether or not they have autonomic dysreflexia and how it manifests for them if they do. (That's really important, don't put a dude on pressors or fluid overload if their bp is normally very low.) Then we work hard and try to get things done. What I've discovered is that you can't care for them without listening, comfort is almost more important than health, and scheduling appointments and laundry lists work for most of them. As in, I'm coming back in 1 hour, when I come what do you want me to bring? and write it down.

    One of my pickiest laundry list patients ever was just a little short, fat, cardiac cripple who the staff always took turns caring for. I wrote the laundry list in my pocket notebook as she said it. Then went to the whiteboard and put "long term issues" up and out of the laundry list, wrote all the things I could not get done in one shift. As consults were ordered or whatnot over the next few days, we checked off items (in that we addressed them, not that they were resolved) and as I did items that shift, I checked them off. The morning came and I showed her I was done with her short list, and we were good. She was so pleased that I had her two more nights. In that time, I had my first dying patient, my first hospice patient, (not the same thing unfortunately for one of them) and a buttload more work than I could reasonably do. The third night this patient and her sister made me sit down, demanded to know what was wrong, and I told them the essence of it without really getting into the details. They told me stories and tried to make me laugh. In the morning, the patient got up, bathed herself, and did her care for the first time in a while. I would not have believed the laundry list would be so powerful a tool as to make people feel you really are trying to help them, when for me it was only a way not to lose my mind.

    Let's see. Also for the patient who wants you to drop your nursing task mid-stride and fluff the pillow: I tried telling that patient that we get to take turns. If I'm carrying narcotics when I walk in, I get the first turn to do my things then I will do the things you want me to do. If I'm not carrying narcs, you get the first turn. For some folks it works really well. Again, I came up with that idea so I don't put the vial or ampule in my pocket, lose it, or break it while trying to accommodate the patient. Also if it's pain or anxiety med, the nurse and the patient benefit from the med taking effect sooner, especially if dressing changes or moving the patient will occur soon.

    Another thing I like to do is remember that if it's difficult for me to move the patient one handed, it probably hurts them like dickens, so work with my coworkers to get help for those things, along with trying to get the patient a bed that assists in turns whenever possible. I have all sorts of tricks for these folks and basically it means the staff works themselves to death, and sometimes there is a bond, sometimes not, and it usually feels like a bad marriage when you keep taking the patient back just because you know how to handle them well.
    blondy2061h, girlmeetsworld, GrnTea, and 1 other like this.
  2. 0
    For some people, I think that it's very hard to remember that you have a real person with feelings lying there. Or, I think people choose to ignore that fact, and instead just get frustrated about all of the demands that the person has. They don't stop and think, of COURSE this person has many demands, wouldn't you if you were lying there helpless and couldn't do a darn thing for yourself?? I don't know why people do this, but most do. I mean, I can honestly say, if a person like that were in my nursing home, a person who couldn't do anything for himself and asked a LOT of the staff... I think more of the staff than not would express mostly frustration, not empathy. I'm just speaking what I believe to be the truth. I don't believe most people are heartless... but there's SOMETHING that causes them to respond to such a resident in frustration. Maybe it's some sort of self-defense mechanism in the brain; to truly understand the sadness regarding what this poor man is going through, the magnitude of the situation, is too much for some people. Or, it's the fact that nursing home workers are simply burned out, suffering from compassion fatigue, and therefore they don't have the capacity right now to empathize for this person.

    Myself, I think I would try hard to be empathetic, but some nights I believe I would get frustrated as well.
  3. 3
    ekramona, I'm will be starting nursing school this August. It's nurses like you that inspired me to become one myself. I hope to be like you when I am a nurse. God Bless you!
    ekramona, tewdles, and PinkNBlue like this.
  4. 0
    how you are feeling is the way we should feel as nurses. I too feel very sad about patients who are like this, I can't imagine how horrible it must be to lose control over your body. Of course, we must have compassion for the other HC workers who work with these patients as well. The CNA's have a hard job. And I see it as a part of my job to help them to be more understanding to the needs of the patient.
  5. 1
    I think before assignments are given for CNAs, the amount of work associated with someone who has that many needs and personal preferences should be considered. If there is a heavier assignment, that patient shouldn't be on that assignment. I worked in a facility (SNF) who had a Resident with ALS and would spend hours in his/her room. That isn't easy to do in skilled nursing, but the other Residents were fairly easy to take care of on that assignment, and moving the ALS Resident around to toilet and transfer was physically tough.

    Never once was I mean or impatient with the Resident, but if the assignment were heavier that may have stressed me out a lot more.
    tewdles likes this.
  6. 3
    My grandma was pretty recently diagnosed with ALS....she is 83 years old and until about a year ago she ran on the treadmill every night, played basketball with us, mowed 2 acres of grass by herself most of the time...this diagnosis has taken her very hard and it's so sad seeing her deteriorate. She is gradually losing her strength especially in her hands, having a lot of difficulty swallowing. I don't think you ever really understand what it's like until you see a loved one go through it or especially until you go through it yourself. I love my grandma dearly but I can't help but wish she would die from another cause (something quick and less heartbreaking) before she becomes a prisoner in her own body.
    tewdles, 08RNGrad, and leslie :-D like this.
  7. 0
    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!
  8. 3
    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.
    tewdles, Amnesty, and leslie :-D like this.
  9. 0
    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.
  10. 2
    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
    blondy2061h and tewdles like this.


Top