First and foremost, I apologize if this has been posted in the wrong forum. I looked at all of the available forums carefully and this seemed to be the most appropriate area to express my concern. I do not think there is a quick way to express this. I try to be as curt as possible though, especially in regard to the events that transpired before this happened to us.
I am the mother of a 24 year old male-to-female transsexual who was admitted to the hospital three and a half months ago after experiencing back pain that developed into very severe leg weakness that quickly prevented her from even being able to carry her own weight. Her condition worsened for another two weeks, her legs were paralyzed completely for almost two months, she lost upper body coordination, experienced a great deal of pain, and developed very severe continence issues. Within just a few days of her admission many causes were ruled out and the diagnosis as it stands now is 'idiopathic transverse myelitis.' It goes without saying that this is very much for us to handle given the circumstances. The only real solace we have right now is the word of the doctors that there is still a significant chance of her making a full recovery. We can only all hope that things turn out for the best and do what we can to help her recover at this point.
Between myself, my husband, and my older daughter, we were able to remain very involved throughout her recovery to this point. My workplace was even so permissive as to allow me a month off now that she has been discharged. I will also be working shorter hours when I do go back to work, which is worrying but I feel I have no choice for now. In the three weeks that she has been back home with us however, I have begun to understand that this is going to be more difficult than I even could have ever imagined. While she didn't suffer mentally(emotionally is another story...) for this at all, she is still having to learn how to take care of herself all over again. She is capable of repositioning herself most of the time in bed(with the aid of a trapeze looking device), but she is not yet capable of transferring to a wheelchair or from one. She also suffers from a very significant amount of neuropathic pain on a regular basis. The medication the doctor prescribed does help her with it, but it also seems to make her drowsy and ambivalent. She is almost entirely without control of her bladder and bowels. Catheters have been necessary to drain her bladder at times and she often can not tell whether or not she has to go to the restroom. She wets herself in varying amounts everyday, but the bowel movements are much more irregular. The first week she was back I just tried to put a towel or a big underpad we had left from training our dogs(it looked just like what they had at the rehabilitation center after all). It became evident that wasn't going to be an option quite quickly, as her clothes were still being soiled, and it made her extremely averse to even letting me take her outside around the block to get some air for fear of embarrassment. We've since put her into diapers to manage the problem, which is difficult for a number of unique factors that lead me to the concern which spurred this topic.
While she has been living as a woman with little to no incident for the last two years, she is still anatomically male down there. Otherwise, she looks, and sounds feminine on account of(according to her) her having started at such a young age. She was even about to be able to finish her bachelor's studies and had been working for some time in an environment where she was known as female. This did not post a big problem in the hospital, but she did tell us a few times that she was insensitively referred to as a man by people who were helping her with her hygiene needs. She did seem upset about this but at the same time she has expressed that she had developed the ability to cope with it from past experience.
When I return to work, even part time, it is going to be absolutely necessary that we receive some sort of help in order to take care of her needs. She is still attending outpatient rehabilitation in addition to the other things mentioned, so it is necessary that somebody is available to help her when we can't. As far as I know, there are many home healthcare services around here that are willing to provide this kind of care. What worries me so much is the amount of trust that we are going to have to place in whoever we hire to do this. This is somebody that will be coming into our home and will very much be in charge of her well-being for many hours at a time. In addition to that, I am not sure that I can trust the word of the consultants who say that there will be no issue with her status. Long before I ever imagined myself in this position, I recall reading horror stories of negligence on the part of caregivers in relatively normal circumstances. I am afraid that we will end up with somebody who says they are okay, but at the same time fail to carry through on their promise. Though we probably live in the most liberal part of this state, we're still in Texas and this makes me worry a lot. I have lived here all of my life and I know that it's in many ways a culture that can manage to be polite for appearances, but not much else. I just hope to God that we can look back on this situation and be in a better place in a few years.
I want to hear the attitudes and opinions of those in the nursing profession about this situation. Have you ever been witness to any form of discrimination affecting patient care and/or would you feel uncomfortable caring for certain kinds of patients yourself?
I apologize for the length of the post, the truly pertinent information is that we are concerned that her anatomy will affect the care she receives.
The issue here WILL NOT be the quality of care, as your daughter is able to direct the care itself. The issue here WILL BE PRIVACY. Despite all the HIPAA regulations in the world, people talk.
You must emphasize to any agency that you AND THE LAW expect utter and total confidentiality and privacy, and you will be vigilant in that expectation.
Tell them that there will be NO reason to tell anyone who is not in direct contact with the patient (or other need-to-know personnel) ANYTHING about your daughter, and should you ever find out that anything was revealed about her, you will be seeing a lawyer.
Again, I believe that your issue will not be the care, but the confidentiality.
I think in a perfect world, it shouldn't matter if a nurse is gay/straight, male/female, whatever color/nationality/religion. And it makes me mad sometimes trying to cater to things like that. But if it's going to be a long term assignment, which a lot of home health ones are, then it can be better for the nurse if they fit into the ideal mold that the patient wants.
We've got a frequent flyer that when his name comes up, one nurse ALWAYS has to bring up that she thinks he's gay. This goes along with her regular random musings on how she loves the person but hates the sin of being gay. Drives me batty. Now she might love the person, she might do all the skills right. But if I was charge and assigning a gay patient, I'd probably not assign them to her just because no matter how much you try to cover up your prejudices, they tend to always show themselves in the end.
I understand what u are saying but no one can have the ideal mold they want a nurse to be. There aren't that many nurses to go around.
Thank you all very much for the feedback. It does make sense that home health services would be easily tailored to the individual, and in all reality we should have much more control than we had when she was in inpatient care. I think I am still dealing with a considerable amount of unresolved fear since this happened.
In regard to communicating her needs, my main concern is that she isn't always sure what she is feeling on account of diminished sensation. The depression is eating her alive on top of that. Some days she has it in her to be highly involved. On the other hand, there are some days where she barely feels like speaking and it takes a lot of encouragement to even get her to put up with us while we help her with her exercises. I can only hope that gets better as we all adjust more and even more hopefully as she gets better! I understand that a nurse is trained to deal with this, but I'm still worried that there is some room for negligence.
CountryGirlRN:
We definitely have many doctors appointments ahead of us, and I do understand that this can be managed in a way that is more comfortable for all of us. We already have a referral and plans to meet with a specialist in another couple of weeks. The issue now is that in our burgeoning city of over a million, we seem to be very underrepresented in this area, so it's taking time. I thank you for the information and I will make sure to ask about the treatment you shared.
smartnurse1982:
I am not certain that your comments are in reference to our situation. We are primarily concerned about the quality of care she receives. At the same time, I would think that 'to do the job right,' you would be highly concerned with making the patient feel comfortable. As long as the person is willing to demonstrate respect for our home and our daughter the same as they would anybody else, this is all that matters. If the person can truly keep their feelings to themselves, that is fine with me. But, my stomach turns even thinking about somebody walking out the door and airing it to their little gossip circle.
mamamerlee:
You are right, privacy is extremely important. I will indeed make sure to emphasize the points you highlighted, and I thank you for that advice.
Specializes in Management, Emergency, Psych, Med Surg.
I have cared for many transgendered and transexual patients and have never felt uncomfortable doing so. This is something that you will need to discuss in your first intake session and it will be important for you to make clear what you and your daughters wishes and desires are. And you might want to ask them if they are comfortable with those expectations. You will then have to defer to your daughter to see how things are going. I assume that she can speak and make her needs be known. If she has any difficulty at all, it should be reported and discussed at once. And do not be afraid to speak up. You are paying for these services and you have a right to expect that your daughter be treated in a professional, respectful, caring manner.
My very best to you and your family. We all understand what a trying time this is for you right now and how hard it will be for you to leave her in the care of others. Please keep us posted. We are here to support you.
mamamerlee, LPN
949 Posts
The issue here WILL NOT be the quality of care, as your daughter is able to direct the care itself. The issue here WILL BE PRIVACY. Despite all the HIPAA regulations in the world, people talk.
You must emphasize to any agency that you AND THE LAW expect utter and total confidentiality and privacy, and you will be vigilant in that expectation.
Tell them that there will be NO reason to tell anyone who is not in direct contact with the patient (or other need-to-know personnel) ANYTHING about your daughter, and should you ever find out that anything was revealed about her, you will be seeing a lawyer.
Again, I believe that your issue will not be the care, but the confidentiality.
Best wishes