Keeping my patient's dignity intact? Please help me!! (long but urgent)

[KateyBug]

I am nurse and caretaker to a partially mute male, 14 years old. He has failure throughout his body, including problems with digestive and nervous and vital systems, and I must tend to him.

He has good skills and intelligent and mentally independent. He can do and enjoys doing puzzles or hand activities, but can only do so much due to low coordination. He understands language and he can make noises that resemble words, however does not speak much. He prefers to make sounds or be silent.

I massage his belly to bring about eructation (burps) and flatulence and to improve digestion. I also massage him daily to help with digestion and circulation and to soothe him.

I handle hygiene and intimacy. I give him physicals or check ups once a week. I bathe and groom him regularly and take good care of his skin. I diaper him since he dislikes bed pans or catheters. Not to mention he does have sexual insecurity, even with puberty, so it is even worse on that part. I occasionally administer enemas or laxatives also.

We've agreed that it is acceptable for me to spoonfeed him, since he has poor coordination. Often he can feed himself but requires assistanxe. Although I do respect him and I assure meals are satisfying.

I do talk to him kindly and considerably. I communicate with him and make sure I know what he needs or what he wants me to know, even though he has difficulty replying or talking. He cannot communicate easily but he is very intelligent and he has a very active mind. Even though his body cannot function correctly, his mind and feelings are still working fully. So I am concerned. He does enjoy the care. He likes massages and such. He knows he can trust me and that I can help and comfort him. He knows I will respect him and do what he needs.

However, things can be too overwhelming, like my "full control" or his overdependence. I feel as if I invade or put too much pressure on his will.

Please help me. How can I keep his dignity intact? How can I help him yet allow him to not feel like he nothing?

[KateyBug]

Answer what you can. Thank you all in advance.

I have some questions about my patient's safety and comfort. I would like to be a great caretaker, and I'd like to improve each day from my learning.

I'm going into my second year of caretaking in a few months, and I've had this patient for 7 months so far.

Note, he has failures through his body, nervous, digestive, respiratory, etc. I've gotten to know him but not completely because he can not communicate clearly.

So some questions I'd like personal opinions on that concern safety and comfort.

1. Should I keep my hair up all the time?

I tie my hair back during check ups or medical procedures and hygiene affairs. However, could I leave my hair down for common visitation or should I have it tied up? He has nervous system malfunction, so he often has spasms or he jerks around when he has anxiety. He also has impulses and sticks things in his mouth, and he might attempt to swallow. What would be alright?

2. In opinion, is some machinery even necessary?

My old professor as well as my supervisor have insisted upon breathing assistance and pulse monitors and all these annoying tubes. But if he is properly breathing, etc. when I check, do I HAVE to hook him up? It's a lot of stress for us both. He doesn't need it much, but sometimes my supervisor will be on me about it when my patient doesn't need it and I don't have him hooked up. Can I go my own way, if I monitor my patient often? Or is it not any risk to take? How do you all feel?

3. What bath temperature is suitable? They did not teach me this, surprisingly. But what would be comfortable for my patient and best for him? Would it be body temperature or higher? Also anything in the bath I should avoid in general?

4. What about eating? They did not cover much about this in my classes, either. They only covered medical and aide wise. But what about feeding positions? I spoonfeed him or I allow him utensils to eat with assistance and supervision. How should I sit or lay him for best support? Should I prop his head to open the throat or is it not necessary? Also, when spoonfeeding him, he usually cooperates, but once in a while his gag and tongue reflexes say otherwise. Any advice?

Extra. Should I assist him with speech? He can make sounds and mutter and hum and grunt but cannot produce words or properly speak. There's not much of a broad system here, and many therapies are not available in the area we're in, unless you have convenience. So should I help him with speech and talking and communication method? Or is it best to just leave him as he is and not let it be too much of a problem?

Sorry. I am kind of still new and struggling a bit to get with the program. Also, we don't have much of a good education system where I am. I doubt some things and I'd like some assurance and help.

Again, thank you.

[nurseprnRN, BSN, RN]

1. Should I keep my hair up all the time?

I tie my hair back during check ups or medical procedures and hygiene affairs. However, could I leave my hair down for common visitation or should I have it tied up? He has nervous system malfunction, so he often has spasms or he jerks around when he has anxiety. He also has impulses and sticks things in his mouth, and he might attempt to swallow. What would be alright?

If you are asking whether he might not do well if he swallows your hair, you're probably right about that. Tie it up all the time and forget it.

2. In opinion, is some machinery even necessary?

My old professor as well as my supervisor have insisted upon breathing assistance and pulse monitors and all these annoying tubes. But if he is properly breathing, etc. when I check, do I HAVE to hook him up? It's a lot of stress for us both. He doesn't need it much, but sometimes my supervisor will be on me about it when my patient doesn't need it and I don't have him hooked up. Can I go my own way, if I monitor my patient often? Or is it not any risk to take? How do you all feel?

I think this might be a gag, right? No? OK, I'll play it straight. No, you may not make these decisions. You aren't knowledgeable enough to know whether he needs it or not.

What bath temperature is suitable? They did not teach me this, surprisingly. But what would be comfortable for my patient and best for him? Would it be body temperature or higher? Also anything in the bath I should avoid in general?

Try this at home-- wipe yourself down with a washcloth in different temps. Does room temp make you shiver? If the water is really hot, does it hurt? If comfortably warm, is that nice?

Yep, thought so. Be sure you cover all parts that are not being washed at the moment-- it gets chilly out there being damp and naked. Wash, dry, cover, move to next part.

What about eating? They did not cover much about this in my classes, either. They only covered medical and aide wise. But what about feeding positions? I spoonfeed him or I allow him utensils to eat with assistance and supervision. How should I sit or lay him for best support? Should I prop his head to open the throat or is it not necessary? Also, when spoonfeeding him, he usually cooperates, but once in a while his gag and tongue reflexes say otherwise. Any advice?

If you had to take CPR, you remember that the airway is at its most open when the head is tilted back. This is another thing you can try on yourself at home. Sit up, and tip your chin down towards your chest. Swallow a bit of water. Now tip your head back and try it again. Repeat both while lying down (use a straw). When you finish coughing, you'll have your answer.

Never force oral feeding on anyone. People are entitled to refuse. If this is a concern, ask your supervising nurse what she suggests.

There's a gag reflex for a good reason.

Should I assist him with speech? He can make sounds and mutter and hum and grunt but cannot produce words or properly speak. There's not much of a broad system here, and many therapies are not available in the area we're in, unless you have convenience. So should I help him with speech and talking and communication method? Or is it best to just leave him as he is and not let it be too much of a problem?

The basis of all human interaction is communication. So what you're basically asking is, "Should I let him know that I care what he's trying to say and doing my best to guess, or pretty much ignore him and treat him like an inanimate object?" What do you think? What if it were you, or your grandmother?

I think you might be from another country where home caregivers don't get too much assistance or training. Do ask, though, and keep asking. Meanwhile, until you learn a LOT more (like, you have completed a nursing education), don't change a patient's routine or equipment unless you ask the RN whose responsibility he is first, and then ask if she can explain why, so you can learn more.

Good luck.

[KateyBug]

For 4 (about the feeding), I forgot to mention that his gag reflex and his tongue don't cooperate because he has nerve issues. How can I overcome this?

For 5 (about the speech), I know he would like help. But I have two concerns. First, he would not be used to efficiently speaking and it would be very difficult for him. I don't want to make him feel insecure or upset about it. Second, I am wondering if it would put pressure on him. All this time adjusting and being adapted to sounds, then jumping to big words and processing letters. I think he already has a lot of stress on his plate, so I don't know if the pressure is going to hurt him.

[BuckyBadgerRN, ASN, RN]

Wow. #2. Wow

[JustBeachyNurse, LPN]

For 4 (about the feeding), I forgot to mention that his gag reflex and his tongue don't cooperate because he has nerve issues. How can I overcome this?

For 5 (about the speech), I know he would like help. But I have two concerns. First, he would not be used to efficiently speaking and it would be very difficult for him. I don't want to make him feel insecure or upset about it. Second, I am wondering if it would put pressure on him. All this time adjusting and being adapted to sounds, then jumping to big words and processing letters. I think he already has a lot of stress on his plate, so I don't know if the pressure is going to hurt him.

Unless you are a qualified, licensed speech &'language pathologist you are out of scope as a caretaker. There are alternative methods of communication such as photos, gestures, yes no questions.

Do you have a clinical supervisor/nurse overseeing your work?

The equipment issue you are not qualified to assess or determine what may or may not be needed. Follow the instructed plan of care or be derelict and possibly negligent if not using equipment prescribed by a licensed medical professional.

If you were not oriented by a nurse or speech pathologist in safe feeding for a patient with neurological issues and dysphasia you should not be feeding the patient. In the US,"nerve issues" such as cerebral palsy are considered neurological issues. How have you been caring for this man for 7 months without proper orientation, education and training in how to safely care for him?

[KateyBug]

I am not sure what category this would would in, but I need help please.

How can I keep my patient's dignity intact?

I am nurse and caretaker to a mute male, 14 years old. He has failure throughout his body, including problems with digestive and nervous and vital systems, and I must tend to him.

I massage his belly to bring about eructation (burps) and flatulence and to improve digestion. I also massage him daily to help with digestion and circulation and to soothe him.

I handle hygiene and intimacy. I give him physicals or check ups once a week. I bathe and groom him regularly and take good care of his skin. I diaper him since he dislikes bed pans or catheters. Not to mention he does have sexual insecurity, even with puberty, so it is even worse on that part. I occasionally administer enemas or laxatives also. Once in a while he will have vomit or spit up.

We've agreed that it is smoother for me to spoonfeed him most of the time, since he has poor coordination sometimes. Once in a while he can use utensils with assistance and supervision. Although I do respect him and I assure meals are satisfying.

I do talk to him kindly. I communicate with him and make sure I know what he needs or what he wants me to know, even though he has difficulty replying or talking. He cannot communicate easily but he is very intelligent and he has a very active mind.

Even though his body cannot function correctly, his mind and feelings are still working fully. So I am concerned. He does enjoy the care. He likes massages and such. He knows he can trust me and that I can help and comfort him. However, things can be too overwhelming, like my "full control" or his overdependence. How can I keep his dignity intact? How can I help?

[BuckyBadgerRN, ASN, RN]

What do you mean you "give him physicals or check ups" once a week? What is your licensure level?

[KateyBug]

He is 14 years, which is considered a minor in my area, just to let you know.

I have had education and I have license post passing my training.

I do not know what it is like in the US, but you seem to have a complete education. Here, we must get two degrees for medical career, then a year of orientation and 2 for training if you want to be a caretaker or if you want to house and tend to a needy patient. You also sign for supervisor for the first 14 months, who will stop by every so often to check up on you.

Here, we are specialists in either one small subject or a broad yet simple setup. I am not a speech therapist. Rather I am personal to my patient and communicate by learning his body signs and eye contact and facial gestures.

We usually have it pretty smooth, actually. Once in a while I just wonder if I'm doing things right and I worry that I do things wrong.

My patient has problems throughout his body, however I mean "nerve issues" as in the nervous system being in distress or not functioning, from failure to disorders.

[psu_213, BSN, RN]

What do you mean you "give him physicals or check ups" once a week? What is your licensure level?

I was thinking the same thing...

To the OP, try to protect his independence. Allow him to do things he can do himself and encourage him in his attempts. For example, if he is capable of doing some of his feeding himself, help him as needed, but allow him to do as much as he can. Only "take over" if he is totally failing in his attempt to feed himself.

[KateyBug]

Second response.

He has problems functioning throughout his body.

My supervisor says I actually do a proficient job.

He has failure throughout his body, including problems with digestive and nervous and vital systems, and I must tend to him.*

He has good skills and intelligent and mentally independent. He can do and enjoys doing puzzles or hand activities, but can only do so much due to low coordination. He understands language and he can make noises that resemble words, however does not speak much. He prefers to make sounds or be silent.*

I massage his belly to bring about eructation (burps) and flatulence and to improve digestion. I also massage him daily to help with digestion and circulation and to soothe him.*

I handle hygiene and intimacy. I give him physicals or check ups once a week. I bathe and groom him regularly and take good care of his skin. I diaper him since he dislikes bed pans or catheters. Not to mention he does have sexual insecurity, even with puberty, so it is even worse on that part. I occasionally administer enemas or laxatives also.*

We've agreed that it is acceptable for me to spoonfeed him, since he has poor coordination. Often he can feed himself but requires assistanxe. Although I do respect him and I assure meals are satisfying.*

I do talk to him kindly and considerably. I communicate with him and make sure I know what he needs or what he wants me to know, even though he has difficulty replying or talking. He cannot communicate easily but he is very intelligent and he has a very active mind. Even though his body cannot function correctly, his mind and feelings are still working fully. He does enjoy the care. He likes massages and such. He knows he can trust me and that I can help and comfort him. He knows I will respect him and do what he needs.

However some things stop me when I wonder.

[KateyBug]

What do you mean you "give him physicals or check ups" once a week? What is your licensure level?

Physicals or check ups to make sure everything is working alright, his heart and lungs and such.

And what is the term "licensure level?" Is that a US term?