Feeling sad about my ALS patient

[ekramona]

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 to read his lips or use a speaking board. When I first started working with him I felt frustrated at times, but I remained patient and helped him until he was satisfied. Now I know him pretty well and I can usually understand him and anticipate his needs. I do spend a lot of time with him, but he is always grateful when I help. He is very needy, but he is also very pleasant in my opinion.

What is making me sad is that the CNAs and some of the other nurses complain about him a lot saying that he is too picky and impossible to please. He expresses that they are too rough with him and that they don't take enough time to make sure he is comfortable after care. The CNA who attends to him most often told me that she wishes he could be transferred from her assignment because she is tired of all of his "ridiculous requests." I think I'm doing an ok job of communicating with the CNAs to get his needs met, but I am starting to feel upset that they aren't showing any regard for him.

He and his brother explained to me that he started getting sick about 6 years ago when he began to drop items or have trouble turning keys. The disease progressed and he started to lose the use of each limb. Two months ago he lost control of his trunk and was placed on the ventilator with a trach. This guy is A&Ox3, and he is trapped in the prison of his body! He can't even swallow his own secretions, he relies on me to come in regularly to suction his mouth. Plus, since he is newly vented he is still acclimating to his current level of function. Sure, I might end up taking my break a few minutes late some days because a speaking board takes more time than talking... but I didn't go into this field for the breaks, I became a nurse so that I could help people. Anyway, now that he and I have a good rapport, if I occasionally tell him I am very busy he is understanding and does not take too much of my time.

I understand that this type of thing happens all the time in nursing, and I do think I am handling both my relationship with the patient and with my colleagues well, but I just feel sad about the whole situation. I felt the need to express myself about this in the hopes that some of you might understand.

[tewdles, RN]

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.

[RNperdiem, RN]

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.

[BSNbeauty, BSN, RN]

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.

[kat7464]

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.

[Rnicutee]

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

[PalmHarborMom]

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.

[CloudySue]

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.

[Shiner50]

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.

[Indy, LPN, LVN]

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.

[NurseCard, ADN]

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.

[Tinker88]

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!

[Geslina, BSN, RN]

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.