Working with an ALS patient

[Njlpntomsn]

I have worked with 2 ALS patients. my experience has been both a learning experience and a dreadful experience. I am interested in listening to other nurses experiences working with ALS patients.

My whole reason for becoming a nure was to make a difference in someone's life. Make their comfort level excellent. My first ALS patient was very demanding and had a high libido. He wanted the nurses to help him masturbate. (I refused to do) He had no movement from the neck down but comm. through the computer or eye board. He was almost always yelling at the most simplest things. As a home care nurse we would only get paid for the 12 hours, but his wife would come in late or would want to do a bed pan at the exact time I was leaving. This happ. Everyday. Nothing I did felt like I made a diff. To him. It is very emotionally and physically draining. It's different in home care bc your with this patient in one room for 12 hours.

My second ALS patient is the same way except she doesn't ask nurses to help her maturbate.

She's never happy, talks about suicide, always mad at little things. She can't speak but she expects nurses to know exactly what she said the first time. She starts yelling. I have other non ALS patients and its like night n day. Soooo different.

Anyone experience the same thing?

Thanks for listening, I can go on n on but I wanted to do topic that will help other nurses asst. ALS patients in home are.

[nurseprnRN, BSN, RN]

People are people. Some, when living with a horrible present and knowing an unthinkably worse future awaits them, act like the suffering, frightened, bereft, powerless people they are. This should not come as a surprise to anyone.

Pain, fear, and powerlessness do not make people saintly. "Suffering is not inherently ennobling" has been my mantra for a long time. If you can't learn to deal with suffering and do what you can to alleviate some of it, try to find another patient population to work with.

[HouTx, BSN, MSN, EdD]

Psych support/consult should be part of the care network for anyone experiencing the horrible trauma of a terminal diagnosis. We (nurses) tend to try to take on everything and blame ourselves when something is just beyond our skills/expertise. Seems like the case in this situation.

[chrisrn24]

Definitely a psych consult to see if there are underlying issues.

When patients get difficult I try to understand things from their perspective. Imagine being a perfectly healthy adult to totally dependent on others in a relatively short time period. It helps give me a little more patience. That being said, it doesn't excuse yelling at staff, being abusive, asking staff to provide inappropriate services etc.

[jadelpn, LPN, EMT-B]

ALS is a very difficult patient population. They are the patients who have complete loss of control, of varying degrees of movement, are completely and utterly helpless to do most anything by themselves, can have absolutely no independence, but an active and alert mind. Therefore, they are very demanding due to this complete loss of control. I would think very frustrating is an understatement.

The male patient, I would think, needs some boundries. Nurses are not prostitutes. I would think that he and his wife could use some counseling to discuss sexuality and the patient's condition.

The female patient would definetely benefit from a psych consult. When patients start talking about suicide, that is a serious issue.

ALS robs a patient of everything they know but their mind. Which remains as sharp as a tack. Heartbreaking.