Parents controlling an adult child with chronic/progressive disease - page 3

I need advice and input, so here I am, at my most favorite place, with my most favorite nurses! :) OKay, I have this patient and for hippaa reasons I won't get all the way into the dx and... Read More

  1. by   sissiesmama
    Hey - Wow! That's the kind of patient that I HATE to care for, not due to the patient herself, but due to the family members. Usually the patient in this position are very sweet, and appreciate the things you do for them. I don't ever mind doing anything I can for them. The family, on the other hand, well, you know what I'm getting at...

    I understand that a lot of parents ect. have a lot of anger, or they are in denial about their family member's prognosis. But, like in the case of this patient, the family member not wanting you to give her narcotics, especially when she really sounded like she needed it and you gave her the relief she needed to get a little rest.

    I agree with Firestarter, I'd bring in my nurse manager or someone. That is the kind of situation I would hate to get into - you know the patient is hurting.

    I'll get off my soapbox - I hope things get worked out with them.

    Anne, RNC
  2. by   sissiesmama
    Quote from Magsulfate
    Oh yes, and patient is of sound mind, there is NOT a POA filed at the hospital,, and the parents keep treating her like a child, even though she has been an adult for a long time. Like I said, this is a chronic progressive disease that ends in death 100% of the time,, so, narcotics will need to be given or this person will be in a living hell for the rest of her life.
    I am glad the patient has someone like you there to help her and try to make her comfortable, or as comfortable as you can. I just can't imagine being in her situation and not have an advocate - someone in her corner to assist her in that. We know we can't change the facts of the case, when will she die, or the fact that she WILL die, but we ought to be able to do some of things we can do - make them as comfortable as possible for the time they have here with us.

    Anne, RNC
  3. by   Magsulfate
    I am just sooo tired, I cannot explain it. Having to deal with this for three days throughout the weekend. Let it be known that my documentation was the best that it's ever been this weekend and the powers that be were all notified of this complex situation.

    Sooo many other things were going on with this family/patient and I wish that I could explain it all to you all.

    I am just so emotionally drained right now. I wouldn't be surprised if my hair turns gray when I wake up in the morning.

    I've heard about these kinds of situations before but I've never had to deal with it first hand.

    I'm glad that I have four days off now and maybe when I go back they won't be there.

    Thanks for all the replies and advice.
  4. by   sissiesmama
    Mag - That kind of thing will just drain every ounce of energy you have. As if we don't work hard enough and get tired physically, that just adds to it. I hope you do get some rest and can recharge before going back.

    You can tell what a good nurse you are, even just in your words here, and a good human being. You try to do everything for all your patients- and that's not something just every nurse has these days.

    Get some rest and try to just prop up and relax! Anne
  5. by   Magsulfate
    Quote from sissiesmama
    Mag - That kind of thing will just drain every ounce of energy you have. As if we don't work hard enough and get tired physically, that just adds to it. I hope you do get some rest and can recharge before going back.

    You can tell what a good nurse you are, even just in your words here, and a good human being. You try to do everything for all your patients- and that's not something just every nurse has these days.

    Get some rest and try to just prop up and relax! Anne
    Thank you sooo much Anne You are great
  6. by   Batman24
    Does she get 24/7 home health care or do her parents do all of it?! Just curious.
  7. by   Magsulfate
    She gets daytime care from what I understand. I think the biggest issue that needs to be dealt with is denial.

    Denial of this huge decline in health. Denial that his daughter won't gain that health back,, won't ever be able to do the things she was doing ever again. Big denial. BIG.
  8. by   Batman24
    Quote from Magsulfate
    She gets daytime care from what I understand. I think the biggest issue that needs to be dealt with is denial.

    Denial of this huge decline in health. Denial that his daughter won't gain that health back,, won't ever be able to do the things she was doing ever again. Big denial. BIG.
    Is she actively dying at present or is it a condition that will just have her continue to deteriorate?! Would you say she has months, a year, etc. left to live?!

    I fear that when she's at home they will bully the nurse and this poor thing will die in pain. I hope your manager has a spine and gets on it tomorrow while she's still a patient so perhaps this can be dealt with. Maybe if a group gets together and is firm but kind in that this is going to get worse and she is going to die and says it until they start to get it it would help. Maybe a member of their clergy being there if applicable could help as well. My main concern is them not getting her pain meds and the agony she could face without all of you to help her now.
  9. by   Magsulfate
    Update.... we've got dad forcing tube feeding down her g-tube even after doctor ordered no feeding because of vomiting and aspiration last night. Xray shows worsening of pneumonia. Nurse pulled out 1100 cc's of tube feeding 4 hours after dad fed her yesterday.

    We tried to educate the father,, and he yelled... "I KNOW EXACTLY THE CONSEQUENCES AND I WILL FEED HER!! I WILL BE RESPONSIBLE IF SHE SPITS UP!!"....

    oh my goodness.. it never ends.... I have told the manager a few weeks ago that I would not be assigned to this patient anymore. I don't want to be placed in this situation and have my license on the line.

    As time goes on, the father is getting more and more beligerant and uncooperative with treatment. He doesn't want her to die, he just wants to treat her how HE WANTS to treat her,... he doesn't want the doctors and the nurses to have a say in anything.

    I know that he is doing the opposite of what the doctors and nurses teach him,, on purpose.

    What do you do with people like this?? Hide in a closet and scream into a pillow?? I don't know what else to do.. the nurses will often come to me for advice. I tell them to make sure and document, in quotes, the education they are doing,, the response from the patient and father,, and follow up with quotes and facts.
  10. by   Jolie
    It's time for the hospital attorneys to get a restraining order.

    He has progressed from interfering with his daughter receiving necessary and appropriate care (which is bad enough), to actively engaging in behavior that endangers her health and well-being. This amounts to neglect, at best, and abuse, at worst.

    He needs to be kept away.
  11. by   RN1982
    I agree with Jolie. The medical team and social work and risk management, ethics committee all need to get involved as well as the legal department. Why are people just putting up with this man's behavior? If I found him doing that, I would have called security. Seriously, what's up with the co-workers. Doesn't your manager know that this man is a danger to his own daughter?


    The next time your co-workers ask you for advice on how to deal with this man, tell them to call security and have him removed. Yes you can do it, you have every right to. Don't be afraid to do it, stand up for your patient.
  12. by   justiceforjoy
    That poor father needs a counselor. It seems to me that he is trying to control whatever he can, since he has lost control of the most important thing to him (his daughter's life).

    Maybe it's easy for me to be on this side of the computer saying this, but I feel terrible for him and hope that he can get the help he needs so he can properly deal with the grief he's likely pushing aside and replacing with these actions.
  13. by   AlabamaBelle
    {{{{{Hugs}}}}} Watching things like this situation is what makes nursing so hard sometimes. I truly understand the toll it takes on you, Mag. We've had so many children in our unit kept alive -- the parents won't let go and we are "doing" interventions that are painful and ultimately useless; reasoning with parents is also useless. And on the other hand, we had a set of parents who wanted child to be in ABSOLUTELY NO PAIN OR DISCOMFORT. Mom wanted another 50mg benadryl 1 hour after 50mg given for "itching". If I so much as touched the child's gown, she'd howl in pain. She was on a dilaudid PCA, fentanyl patch and had PRN IV pain meds. Better be quick about it - the mom timed us on when asked and up until delivery of med.

    Keep on with the excellent advocacy for this precious one. Dad needs help quick!

    Cindy

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