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.

[emerjensee]

That must be so hard for you to juggle...

I had an ALS Resident as well that was just as sweet as pie but she was by far the most difficult physically to care for. She understood this fully and I always was patient with her. I think the biggest thing that you can do with staff is educate them.

I've ran into so many instances that my CNA's would be frustrated or upset with a resident for something but when I sat down and explain and taught them about it, they were much more patient and understanding..

Best of luck! Thank you for all of your care and compassion, that patient is very lucky to have you!

-emerjensee

[anotherone, BSN, RN]

That's awful. I feel sad for pts like that too. People dom't realize what living like that woukd be like. Unable to do anything and trapped i your body. A lot of employees comain about any pt that isn't a walkie talkie who doesnt get any meds and just hang around.

[Vespertinas]

Let your satisfaction with your own work be your reward.

Not everyone will have same the same rapport with each patient. Your CNAs are clicking with and uplifting other patients whom you may be overlooking. I like to think that we're all doing our special part somewhere.

[jennilynn]

I often feel this same way about paraplegics/quads. At first I thought they were an ever loving PITA, having to micromanage, down to the millimeter, where the pillow goes. I thought they were very controlling, and I am ashamed to say that I was one of those nurses that would eye roll at their requests. I had a pt that wanted his water jug filled 3/4 with coffee, 17 sugars, 1/2 carton of whole milk, then nuke it for 49 seconds. He was also quite the story teller (read liar). While I was caring for him, a lightbulb went off.....these people have no control over anything that is or has happened to them. They are unable to urinate, often times have a colostomy to avoid having to wear a diaper and risk worse skin breakdown than they may already have. So, if it makes them feel in better control to tell me where to put a pillow or how they want their coffee, so be it. I can't say I wouldn't be the same way. I would rather volunteer to take these patients than some of my colleagues because it is heartbreaking to hear how they are talked about by the other staff.

[ekramona]

Vespertinas, You make a very good point and I think you are right. Different staff members click with different patients and each of us is doing the job that God intends.

[ekramona]

I'm glad that you can all understand this experience. I try to be as caring as I can, but sometimes I get emotional. I have only been a nurse for a few years and over time I think it will get easier to have a balance. I just hope I don't get burned out and lose that sense of compassion.

[NurseDirtyBird]

I often feel this same way about paraplegics/quads. At first I thought they were an ever loving PITA, having to micromanage, down to the millimeter, where the pillow goes. I thought they were very controlling, and I am ashamed to say that I was one of those nurses that would eye roll at their requests. I had a pt that wanted his water jug filled 3/4 with coffee, 17 sugars, 1/2 carton of whole milk, then nuke it for 49 seconds. He was also quite the story teller (read liar). While I was caring for him, a lightbulb went off.....these people have no control over anything that is or has happened to them. They are unable to urinate, often times have a colostomy to avoid having to wear a diaper and risk worse skin breakdown than they may already have. So, if it makes them feel in better control to tell me where to put a pillow or how they want their coffee, so be it. I can't say I wouldn't be the same way. I would rather volunteer to take these patients than some of my colleagues because it is heartbreaking to hear how they are talked about by the other staff.

This, except for the specific patient, is exactly what I was going to say!

[leslie :-D]

it really is true that our neediest/demanding of pts, are the most challenging to care for.

i agree that the cna's (who are frustrated) need an inservice...

detailing all the devastation their disease has reeked on their body and functions.

that having things 'just so' is critical in retaining a modicum of autonomy.

if you can make any of the aides sympathetic, you'll be ahead of the game...

as will your pt.

thank you, for being you.

leslie

[RNitis]

When I had patients like this, I would always leave the hospital feeling sad for them, but at the same time, grateful for my own life and those I care for (I would leave crying-at least the first few days). I didn't like how some people spoke of them, like you stated "they have ridiculous requests". I would usually ask one of those people to assist me with that persons care and show them how I treated the person with respect and patience. Then as we left the room, I would try to share my point of view with them. Sometimes you could see the persons face "melt" with compassion as they realized how selfish they had been acting. Once you sit and really think of how it would be if you were in that situation, compassionate people tend to want to help to the best of their ability. Others go about with their narrow-minded attitudes and think of how inconvenienced they are by these patients. By the way you speak, I don't think you have it in you to "not care because of burnout" overtime. All we can do is treat these patients to the best of our abilities and try to teach others to do the same.

[beckster_01, BSN, RN]

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.

[P_RN, ADN, RN]

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.