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My father was moved last week to a different Nursing home in a secured unit. My father is a separate issue as he has his own issues that could fill a book.
My concern is this:
Within the Memory locked unit, there is a woman named Sue. She is very thin and She has dementia. She seems like a very nice woman even if she walks around crying at times and the first time I saw her, she hugged me very tightly and the aide said, well Sue is a hugger. I said it was no problem.
Sue keeps touching herself in her private area and making sounds like she is in pain there. One of the staff said that she has a prolapsed uterus and that medicaid will not pay for the surgery.
I was a bit outraged as it appears that she is in a bit of pain and walks around like this all the time. This angered me so I "planted" a gripe at gripevine.com. This website is a nifty place that allows you to voice an issue and the site contacts the entity to inform them about the gripe and tries to get resolution to the degree that you indicate. So, I planted a grip for the Department of aging and disability in my town. I was not so much blaming them but blaming medicaid who I was told, refused to pay for this surgery. I wanted to see if Dept of aging and disability would look into the issue.
Ok, so I went .to visit my Dad today. While waiting for a nurse, Sue came out of her room with only a short on and was throwing a blanket in the hallway. Through the glass doors I was able to see her from the back and my mouth dropped in horror. The situation that this woman is living in is horrific. Her vagina is so prolapsed that she looks like a man from the rear.
I almost want to cry thinking about it. I told the aide that I was going to contact someone as I consider this abuse. The aide said that she had been trying to let the medical team know how bad it is but that no one can do anything for her. This is a terrible and abusive way to live. The caregiver said that the tip of the uterus is red and irritated. So is she has any incontinence, she immediately goes out of her mind.
I need to contact someone but the problem here is not the nursing home as they are trying to take care of her the best way that they can. Apparently it just isn't on the medicaid formulary as something that they will cover. I have thought about trying to contact a Urologist to see if they might donate their services to take care of her. Anything to help this poor woman. I would love to report it to APS but then the nursing home would come under scrutiny and they are as frustrated as I am.
Does anyone have any good suggestions? My heart is bleeding for this poor lady. She cannot ever sit down because of her condition. The only way she can deal with it is to stand or lie down. This to me is a serious quality of life issue. Please help me figure out what to do. I can go whatever route i need to. I could publicize it to the police or press if I thought it would help.

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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
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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.
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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.
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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
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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.
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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?
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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!
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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.
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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!
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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........
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