I am concerned about a resident at my dad's Nursing Home. What can I do?

You are so kind to be this active due to the distress of a stranger. I'm touched by how much you care. I can also see why you are horrified!

Maybe this woman is too far along with the prolapse, but I do know that there is something called a pessary that can generally be inserted to hold the organs in place. I'm surprised this wasn't done long ago for this woman. The nursing home maybe didn't have care of this woman until it was too late.

You seem to be doing everything you can, and you're right in not wanting to get the nursing home in trouble since they aren't the problem. Contacting the urology department of your local hospital may yield some results. Perhaps there's a program for people who are in such dire situations. Please let us know what happens.
Take care,
Carol

I'm suprised they were at liberty to give you even that much information, and what you were does not even sound right. I would think Medicaid would cover medically necessary surgery, this is not just cosmetic by any means. Nursing home ombudsman would be an option for additional contact to voice concern or complaint.

I am back again to ask about this issue. First I would like to voice that I don't have a problem with knowing about this woman's plight because she is in a great deal of pain 24 hours a day, 7 days a week. If I ever left my loved one in this condition, I hope someone takes notice and calls authorities on me.
Now the situation has gotten to this place and I am asking for more advice but if I don't get any that I feel addresses the urgency of the situation then I am going to be disappointed. I'm sorry, but I really have a problem seeing someone live in unnecessary excrutiating pain every day because some adults don't want to deal with it. I am angry.
Anyway, poor Sue, who is in end stage dementia still lives each day with her organ hanging out of her body. I am outraged about this. The nursing home tried 2x to take her to the dr who agreed to see her pro-bono. I can imagine her experience going on the nursing home bus as she is forced to sit on her uterus over each and every bump and movement because this dr wants her to come to his office instead of agreeing to see her at the NH. Now of course you can't complain when he is willing to take her on but point is, just because she is in dementia doesn't mean they shouldn't take her condition into consideration. I guess this is my first exposure to medicaid or medicare not covering a procedure because it isn't in their formulary. I'm sure the nurses and caregiving staff have seen it all so pardon me. I feel that I came into this situation for a reason and the nurses at the NH thank me profusely.
ANyway, The third time she was sedated and made it to the dr for the exam. What did he say? He referred her to another dr. :\ So, of course that seems like a small request but for someone like Sue, it is an obstacle. In the meantime, the family finally makes an appearance (I don't know nor have seen them) and they want her to have help only if it is paid for by medicare or medicaid. Nice huh?
Sue's dementia is increased by the fact that her cervix which hangs toward the bottom of her organ- is infected and of course, when uric acid touches it, she goes off the charts. So, what does the family do? move her to hospice for end stage dementia. I found out about this a couple of weeks ago and put it out of my mind because I figured it is the families business if they want to put their loved one in hospice. My concern is this: If a person's dementia is increased by an infection that cannot be eradicated due to the condition that caused it, can you assess that the person's dementia is really end-stage or could she be doing better with treatment. The second part of the question is, if someone is in hospice, should they have to live the way the family decides they should just because the family chooses to put them on hospice. The whole thing reeks of abuse to me. I am at the point of calling adult protective services and asking them. I don't care at this point if the NH gets in trouble or not. This woman should never have had to live this way and the family is to blame in my opinion for not making the effort to impact her condition. Now the dr on staff and the family both of whom did not treat this woman's condition have placed her on hospice and we know hospice does nothing but make you comfortable. The whole thing just seems morally wrong to me. You can say what you want but when you see someone who walks around doubled over from a condition that is so easily treated(surgery) and you realize that she is suffering unnecessarily, you might think differently. The nurses are always pulling me aside to tell me thank you and to keep pushing be cause they can't do anything other than send her out to hospital and they just send her back. SUpposedly pain meds help but this is just a sad testament of a family who apparently don't care enough to be involved unless the procedure is free to Sue. I get it, we are all strapped but if it were my parent, I would be at the medicare and medicaid office every day until they did something. Then if they didn't, I would make it known. Most of this is a rant but I would like some feedback if you all have any about contacting APS about this. Most likely they will side with the drs or family? whaddyou think? thanks. sry for my curtness, I am just p.o.'d

Wow Butterflygrl I would be upset too! I'm just repeating some advice I've already seen given here so I personally haven't done this, but I've heard that contacting your congressional representative can get some action. This is a truly shameful situation and someone like a Rep. or Senator might be willing to act. Healthcare is such a hot topic right now in this country that might make it even more likely that they would intervene. Also calling APS makes sense to me though I suspect now she's in hospice it does make everything more complicated. Still the amount of pain she must be in seems to require that something be done beyond her just getting strong pain meds. She's lucky to have you on her on side no matter what happens.

oh also, I didn't mean to say anything about Hospice not doing anything. I meant that they do palliative care and don't treat conditions.

I'm thinking something like a hysterectomy might count as treatment of a condition, so maybe they'll just treat the pain of the condition and leave it at that? Also she's got to have a defined amount of time left to live or she couldn't be in hospice right?

There is a defined procedure for disputing a Medicare or Medicaid denial of coverage. The steps to take appear on the form denying the coverage. I went through that appeal process several times on behalf of drugs for my husband. Do you know if anyone pursued that on Sue's behalf?

It is so critical that vulnerable adults have an advocate! You are certainly doing your best to play that role. But without some kind of official connection to Sue you are not privy to what has already been done, why or why not, and what your next steps could be. This is heartbreaking!

Yes, I agree that she needs an advocate. Esp with a family like this who seems to be either uninformed or unwilling or unable to effectively do it.
The Dr who is over the nursing home care is the one who has neglected to treat her. He is probably the one recommending hospice. My understanding is that the hospice is based on end stage dementia. I thought there was no time limit for dementia. That they don't know how long it can last. I can see how her family wouldn't want her to live like she does with the dementia. Perhaps they feel they are doing the loving thing and getting her out of her misery in this way. It's heartbreaking. thanks for the support!

My husband was on hospice for end stage dementia. His actual cause of death (as is often the case in dementia) was pneumonia and pulmonary embolism. The brain controls all functions of the body, and when key functions start to fail, the person moves closer to death. No one's life expectancy can be predicted precisely -- not with cancer or COPD or dementia. But it is often possible to determine when someone is in the end stage.

I hope that Sue's hospice experience is as comforting as ours was. The hospice nurses were very creative in keeping pain and mental anguish to a minimum. It was a blessing to have the medical help come to us, and not to try to take my husband somewhere for treatment. I wish I'd enrolled him in hospice sooner, but I am very thankful for the five weeks we had of it.

There is only so much you can do with the HIPPA laws but If no one will do anything and it's put off as Medicaid won't pay for it. I think the first thing to do is have one of the staff talk to the administrator, social worker, then if nothing still isn't done I would contact adult protective services if that didn't do any good It's time to pull the governor into it.I would think something would be done at that level because politicians can't have bad press and that's what everyone I spoke with in an attempt to get this lady help would get. I believe in giving a chance to rectify a problem but a prolapse hanging that low is inexcusable I don't care if the lady does have dementia. She can still feel pain and deserves to be treated properly and with dignity not just given pain medicine.

onlychildslave- I agree and I wonder if I should tell the nursing home that I feel obligated to contact someone. Perhaps that's why they put her on hospice?? do you think they might have done that so that in case nothing gets done, they can just say- "well, she was on hospice and all you can have is palliative care." I don't know but I find it odd that the family who has been uninvolved (according to the aide) just all of a sudden ups and puts her on hospice. Then they state that they don't mind if she has the surgery but only if the state pays for it. I can't believe the detachment they are showing toward her. Maybe there is stuff I don't know but it doesn't sound like they care if it's done or not. I swear if I could show you video of how much pain she is walking around with it would make you cry. She makes the noise you make when something is raw/ stings. oh, it sends me to tears. The staff all feel the same way but no one can seem to do much. I guess I'm just now finding out how prevalent prolapse is. I never knew about it before.

Yes, go to APS to report this. I don't know if that will work, but she is an elder who is suffering from neglect.

When all this is over with my mum I have vowed to start a war if i have to over elderly care in NH. Tougher prison sentences for anyone who abuses a frail ill vunerable person.
Heaven help the NH that we choose for mum I will creep around in the dark at night like a NINJA to make sure she is taken care of as we all should be!

thank you!

This is a july post, whats going on , did she get help. I wont even sleep tonight thinking of this, how horrific! Call APS, Call anyone, just do it and interfere , be an advocate for that poor woman no matter what, and thank you!

Actually, the answer to this is unfortunately no. Her family has decided to place her in hospice with end stage dementia. As we all know, that can last an undetermined while. The nursing home is being guarded with me about it now as they want to keep me placated about it. In other words they tell me they are doing all they can and not to worry about it, they will handle it. I have not dropped it off of my radar although honestly in discussing it with others, it seems as if I can stir up quite a bees nest in terms of calling APS. Who knows how APS would hanlde it? blame the nursing home, blame the family and then ultimately be told by medicaid that they don't cover it and nothing can be done because of hospice. I don't know at all how the system works and I don't want to get my father's nursing home in trouble if they are simply following the wishes of the family. What to do, what to do........

Well, one thing to be aware of that might seem counterituitive; hospice bundled payment is supposed to cover everything related to the hospice diagnosis, but insurance typically pays for UNRELATED things that need medical attention. This case just seems backwards. She's in hospice for dementia, but the prolapse is causing the most pain and it is not related to the hospice diagnosis and should be a covered condition. I can see the nursing home being close mouthed with you because of HIPAA, but really, I don't get it either. If the famiy refuses to consent I would think they are who APS would have to approach about it, not the nursing home, who can't legally take her in for care that the famiy does not agree to. I could have it wrong somehow, but that's from a web site www.nhpco.org/sites/default/files/public/regulatory/FY2014_Proposed_WageIndex.pdf that says " hospices are required to provide virtually all the care that is needed by terminally ill patients” (48 FR 56010 through 56011). Therefore, unless there is clear evidence that a condition is unrelated to the terminal illness, all services would be considered related. It is also the responsibility of the hospice physician to document why a patient’s medical need(s) would be unrelated to the terminal illness.” and you'd think this would be easy enough to document as unrelated. Just my $0.02.

It probably is that the surgery itself would kill her. She would die on the table or her dementia would increase so much being taken from her surroundings. Hospitals can cause delirum in the healthiest elder, much less one with end stage dementia. It is the nursing home's fault that the area isn't cared for properly that it isn't infected, and she is free of pain. If it is so painful, would a catheter help, or at the very least a salve to lessen the pain. Doesn't the NH have a Doctor on call? I would report the NH. Something is not right here.

good points. I don't know the answer to all of these things. I do know that they family said they didn't "mind is she had the surgery done" as long as it was covered by medicaid. I thought as well that the surgery might be too risky but that is true for anyone. How can they justify denying someone surgery to relieve a condition by saying that it might threaten their life. It's so confusing to me. Last time I went to see my dad, I couldn't bear another visit with her so I stayed away instead of checking on her and hugging her. It just distresses me and I don't mean to make it about myself at all. I just am frustrated with the whole thing. She is pretty much a healthy person aside from the dementia. She walks around visiting and talking albeit sometimes doubled over in pain when having a rough day. The nurses aide says that she tries to get to her as soon as she can after she pees to prevent her from going ballistic. I have seen her after this time once and she ran into the hallway screaming. The aide says she tries to prevent her but can only get her there so fast. Please keep her in your prayers, her name is Sue. thanks so much.

I think the best route at this point is to call APS for neglect/abuse and also call state representatives offices to push for one form of treatment or another (either a uretroplasty {sp?} or a hysterectomy) to effectively treat Sue's condition.

Although Sue is on hospice and they are most known for palliative care, they will still treat other conditions. The requirement to get into hospice is that the patient (or family if patient is incapable of signing or making their own decisions) signs a DNR order (Do Not Resuscitate order). DNR does NOT mean "do not treat", it simply states that they do not want extraordinary efforts applied to save their lives at the end (no CPR, no defibrillation, no implanted pacemaker, no intubation, etc.). Taking care of this prolapsed uterus is going to improve her quality if life for the duration of her life. I also believe that once she gets this rectified that her dementia may improve a bit since some conditions are capable of causing a decline of mental function. Even a person without dementia would have difficulty at times with word recall, short term memory, etc. since the pain associated with the condition can make you less focused on your surroundings and more focused on the pain you are experiencing.

I also think the next time you are at the NH you could suggest to a nurse that they talk to the doc about placing a Foley catheter for urinary diversion away from her sore uterus/cervix and allow the irritated/red/infected part to recover. The doc should also prescribe an anti fungal cream to use on the red/irritated/infected spots to help them heal.

Good luck in your endeavor to help Sue get this badly needed treatment to get her organ back to its proper location. You are a great advocate! Keep us updated and maybe if someone is in the same state they could call the state officials as well to express concern over Medicaid coverage (or lack thereof!) for restorative surgery of an ill fitting ( ;-) ) body part.

Wheelie :-)