Feeling sad about my ALS patient - page 2

by ekramona 5,849 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


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    I agree with what others have said. Perhaps the other staff needs a reminder that even though they get to go home at night, this is the patients life right now. If they take the time, as you have, to learn about the patient and his needs, then caring for him will be easier. That is why continuity of care for this type of patient is so important, especially if your are in a LTC. Of course that doesn't mean you should have him every time you work (you'd get exhausted!). But at my job they have formed "core" groups of nurses that have good rapport with more difficult patients and it generally works out well.
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    I had an uncle die with ALS quite a while back and basically what the doctor told us was take him home, let a fan blow on his face so he can feel something and he'll die pretty soon...this was IN UNCLE A's presence.Reading that even now I want to scream.

    My experience is a little different in that it was a high quad not ALS. At the time our hospital had say 400 beds available to general patients. He had burned out every single staff on all of them but ours-so we got him. The first thing we did was stop him from (I don't know the term) phpblttttt every few minutes when he wanted attention. We turned his bed diagonally so he could see who was passing by. Then God stepped in and sent us "A" whose daughter had died result traffic accident. She had all kinds of equipment that could be handled by turning a cheek, nudging with his nose. Then another happenstance he coughed out his trach tube. The tech with him had a child who needs to go to the Scottish Rite hospital and she saw plenty. she held her hand over the trach and said do you want this in or out. In the next few seconds he said VERBALLY SAID. Blankety blank no. The resident came up right away and she had him repeat it. From that day on no trach. An accidental empowerment or God's hand?

    I'm not going to go into all the rest, but we kept him there and happy with us for another 5-6 months. He got a Passey-Muir, one of the donated equipment was a telephone dialer. He became a "feature celebrity" on the country station. He got to go the funeral of his brother thanks to the volunteerism of w GREAT LPNs. He go to see the sunshine and the trees and feel the breeze.

    Before he left for the house built for him he was saying please, thank you, using our names without a preamble of you#$%^.
    I don't know if this parallels your ALS patient, but I suspect it might.
    GrnTea likes this.
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    I agree with Leslie and others who have commented that your nonprofessional staff are in need of some inservicing on these diseases and how they affect their victims.

    The aide currently providing most of his care DOES need to have him transferred to another caregiver if she is being too rough with him in her compassion fatigue.

    These are very difficult and troubling cases which need a fair amount of expertise and skill to achieve the goals of care. We can only help these patients if we are willing to be selfless, responsive, and compassionate. The patients are not always right, but they are always entitled to their opinions and perspectives. Their POV is valuable and is totally different from the POV of the care provider.
    catlvr likes this.
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    Your patient is lucky to have you.
    It would take the patience of a saint not to feel aggravated by that level of neediness in either patient or family (sometimes both). You have felt what your coworkers felt, but managed to do the right thing anyway.
    Vespertinas likes this.
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    OP I completely understand how you feel. I, too, always had great empathy for paralyzed residents that were deemed" Annoying" or "demanding". The resident would love me but hate my co-workers. It was hard trying to maintain a relationship with my co-workers and patient as I didn't want to be seen as siding with the patient. One day I did talk to some of the aides who always complained about the resident and explained the disease and how frustrating it must be for the resident to not be able to stratch their nose. They try to control the things they can like the care they receive.
    It is important to set limits with the resident if they are abusing the call light or being extremly rude, but it is equally important that the aides are patient and empathetic.
    I, too, was sad but when I know I've made they're day a little easier by going the extra mile or spending an extra two minutes to listen to their concerns my sadness turn into happiness.
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    The poor man has little control of his life, and is therefore "picky." I work in hospice and we recently had an ALS pt. Regardless of the diagnosis, anyone facing a terminal illness feels a definite lack of control over their body and circumstances. It can be frustrating for caregivers, but think of the poor patient. Our discomfort is of little importance if it means they can have power over whatever area of life they have left. Remember, it's about the pt and family - not the nurse.
    tewdles, GrnTea, and leslie :-D like this.
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    IMHO by far one of the WORSE diseases to have

    It sounds like you're doing a wonderful job for him and just be pleased that YOU are sensitive to his situation and he recieves that
    Kind of care and compassion from you. Bravo to you for keeping the quality of a real nurse alive
    tewdles and GrnTea like this.
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    I am still in nursing school but was fortunate enough to spend our first semester on the Spinal Cord unit in a Veterans Hospital. We were able to care for patients with varying degrees of care. Some of our patients were total care. Unfortunately, most of the patients had no family that were there regularly (if at all). We, as students, we able to get to know them over the course of the semester and some were a hoot! One day, I had a total care patient that we had been told had been fed by the outgoing shift. When I went in to do AM care for the patient, he stated that he hadn't eaten yet. My preceptor and I assumed that he had forgotten but still fed him. Later, we learned that the CNA had put the patients food in the snack room to be heated up but never fed him. This really upset me! This was a patient that could not scratch his nose if he wanted to. Later that same day, a different patient wanted cranberry juice to drink and the nurse brought the patient orange juice.... She could not understand why he was upset and voiced her displeasure with him being picky. There was cranberry juice in the snack room, she just grabbed the first thing she saw in the frig. Knowing this, I brought him the juice that he wanted. Being a student makes it harder to know when we are allowed make waves with seasoned nurses. Instead I found a way for her to see how the situation might stink for the patient. It was a crazy day and she had been unable to run and get a drink to go with her lunch. I offered to get her a drink and she told me what she wanted. I did get her a drink but not what she wanted. When I brought it to her I repeated exactly what she said to the patient "That's all they have". She knew that I was full of it and said "Point well taken". I worked with her a few times that semester and she was a great nurse. Even great nurses can have moments of not seeing the situation through the eyes of the patient. Hopefully, I can preserve my way of seeing things from both sides of the fence as I progress through my career.
    blondy2061h, pseudomonas, GrnTea, and 1 other like this.
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    I've worked w 3 different college students with afflictions in the MD spectrum, all wheelchair-bound with very limited use of their forearms or hands. The first one I worked with, I just thought she was picky and it took me a while to get used to how she wanted every speck of anything cleaned up (drops of water, a speck of powder from her drink) and thought she was OCD/neurotic. I learned to just go with the flow, and soon learned how she wanted everything to be, and even anticipated her requests and act on them before she'd even ask. Then as I worked w the other two, I realized that this picky-ness was a recurring theme with individuals w quad limitations. I can totally relate to the person earlier on this thread who said that the pillow had to be JUST right... I could not believe it made a difference if it had to be moved one centimeter over, and then two millimeters back because I went too far! I was actually thinking, "Really, kid? You messing with me? Playing around to see how much I'll tolerate?" But no, it's just like when able-bodied people get comfortable for bed, we make tiny adjustments to our bodies all the time and don't realize it. Helping people use their voices as their muscles is a noble purpose in life. It takes lots of patience to get used to serving that function for a person who has lost all control of their bodies, but it's such an incredible gift to give that person, to help them cheerfully. Maintains their dignity.
    blondy2061h likes this.
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    I think that all nurses should read Bed Number Ten by Sue Baier! It was a requirement to begin my nursing program. It really opened my eyes to the needs of helpless patients.
    tewdles, Spidey's mom, and GrnTea like this.


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