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

Specialties Private Duty

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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?

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.

That is usually how it works. I can tell by his body language whether it's going to be his mission or if I'm going to have to step in.

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Specializes in HH, Peds, Rehab, Clinical.
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?

Are you a nurse? RN? LPN? personal care worker?

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Specializes in HH, Peds, Rehab, Clinical.

I handle hygiene and intimacy. I give him physicals or check ups once a week

What does this mean? You handle intimacy? May I ask where you are located?

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Specializes in Emergency, Telemetry, Transplant.

1. If you are concerned that he will have a spasm and grab your hair, then, yes, tie it up for your safety. (For his safety too if you think he will try and swallow it.)

2. I'm not sure the role of your supervisor or of yourself. However, if it is ordered by a doctor, then hook it up. I am also not sure of what the "machinery" is, but it does not sound like you have the authority to determine if it is or is not needed.

3. Immerse your arm in the bath water. Is it too hot, too cold, or just right? Also, judge his reaction to it. Is he shivering? Grimacing? Those are indications that a change in water temp. is needed.

4. Sit him all they way up, neck midline. Any signs of choking, stop the feeding--don't overlook the gag reflex.

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Are you a nurse? RN? LPN? personal care worker?

I am an educated nurse, a year's experience as well.

I have gotten traning in basic caretaking, training in medical aid, training in social and personal care, and training in medical equipment.

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I handle hygiene and intimacy. I give him physicals or check ups once a week

What does this mean? You handle intimacy? May I ask where you are located?

I handle intimacy, including hygiene and private or personal care.

Physicals and check ups are to make sure his circulatory and respiratory and such is still going well.

I am in a small, confidential nation near the US state of Hawaii (if that's how you spell it). I am Caucasian and speak English naturally.

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1. If you are concerned that he will have a spasm and grab your hair, then, yes, tie it up for your safety. (For his safety too if you think he will try and swallow it.)

2. I'm not sure the role of your supervisor or of yourself. However, if it is ordered by a doctor, then hook it up. I am also not sure of what the "machinery" is, but it does not sound like you have the authority to determine if it is or is not needed.

3. Immerse your arm in the bath water. Is it too hot, too cold, or just right? Also, judge his reaction to it. Is he shivering? Grimacing? Those are indications that a change in water temp. is needed.

4. Sit him all they way up, neck midline. Any signs of choking, stop the feeding--don't overlook the gag reflex.

Thank you.

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Specializes in Complex pedi to LTC/SA & now a manager.

Are you a licensed nurse or a home health aide/caretaker?

As far as communication, words are not required. Google assistive or alternative communication for nonverbal children. Some sites for parents of children with autism have low cost, low tech communication methods that can easily be implemented.

Your description sounds a lot like a child with a complicated neurological condition. There are many parent and caregiver resources online and even Facebook. Lots of ideas for adaptive activities that are easy to implement.

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I have received a nursing license and I have had experience. However I am settling down and doing caretaking.

And I have never heard of the communication technology. There are techniques but what about the Google part now? Does Google have that?

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Specializes in Med/Surg, Academics.

The only two things I will comment on are the ones that concern me the most.

1) You must "hook him up" to whatever monitors the doctor has ordered. If the patient does not like the monitors, is upset or impeded in activities by them, and does not feel they are necessary, I would encourage you to have his parent or guardian talk to the doctor on the patient's behalf to see if the monitoring is necessary. Until changes are made to the doctor's orders, you must do them each time you check your patient.

2) For feeding your patient, he should be upright during feeding. His head should be at least vertical or with his chin tucked slightly when he swallows. He may need to swallow more than once for each bite of feeding. Go at his pace.

It is obvious you are not in the US and that you may not have had the education and resources that nurses and caregivers have here. However, I am impressed with your commitment to doing a good job for your patient, and your desire to increase your knowledge to give the best care you can.

Good luck to you!

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Specializes in Complex pedi to LTC/SA & now a manager.
I have received a nursing license and I have had experience. However I am settling down and doing caretaking.

And I have never heard of the communication technology. There are techniques but what about the Google part now? Does Google have that?

Google as the search engine to find the resources not google as the resource.

Assistive communication is the usual terminology.

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