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I have a very strange situation. I am trying to help my uncle from long distance as he is being bounced around from nursing homes to hospitals. It seems
with HIPPA no one shares info. Strangely, his maid called and told me a nurse had ripped out one of his tubes and he almost died. When I confronted them they did not deny it but wanted to know who told me so they could fire them.

My uncle was being treated for a broken arm from a fall. He had a somewhat successful operation but there was a mixup on his dialysis routine. I called his dialysis doctor and asked if he could go to the nursing home and get my uncle admitted for emergency dialysis. I was caught off guard by his response, " I do not go to nursing homes!" I got his primary care doc to get him admitted for emergency dialysis but his behavior changed and they tagged him with dementia. He had another complication which I don't understand, he started having trouble swallowing. So they put a feeding tube in his stomach. He then started yelling for water as his mouth was dry. They pointed to the dementia and started drugging him.

When the doctor completed his plan of care he stated my uncle he was going into pallative care and he and the dialysis doctor signed a DNR order. When he was transferred back to the nursing home the social worker called about this DNR order as my uncle had instructed her when he first arrived
that he wanted the opposite of a DNR. When I questioned the doctor he said go ahead and rescind it and I am now his guardian and need to relocate him
since no other specialist in the area will see him as they are in the same dialysis group.

I stated he could not make me guardian and I could not move him. So the alternative was removing me from the contact list and they would be getting a guardian. Adult Protective Services(APS) may be getting involved. I got voicemail that my uncle was on deaths door and when I called they charge nurse said no he is being transferred back to the nursing home. This has happened twice.

Are there non-profits that know how to deal with APS, guardians and healthcare agencies. Lawyer wants to start reporting everyone to some medical board and we just want some one in charge to oversee that my uncle is having some quality of life. Any ideas greatly appreciated. Thanks.

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It is next to impossible to try and manage care from a distance. I had a HORRIBLE experience with my mother, and basically resorted to cursing an admissions director out on the phone before I got the answers I needed and was able to relocate her to my city. Bottom line is that someone needs to advocate for him in person. I hope you can make that happen.
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Why can't he relocate to a place near you, where you can visit him and make sure his care is nice?
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If your uncle is in a skilled nursing facility (nursing home), there is an ombudsman assigned to his building. I find a big variation in the competency of ombudsman. Some areas have paid professionals with master degrees and some areas (usually rural) have volunteers. Their job is to be your uncle's advocate and it's a no cost to you service so it's work a shot.

I also agree with others that say hiring a geriatric care manager might be a good option. If you're in a resource rich market, you'll be able to hire one between $75 - $150 an hour (ball park). I know the cost can seem crazy but a GCM will be able to give you honest recommendations. Since your uncle's medical condition is a bit complicated, a registered nurse would be a good choice.

Good luck, you have your hands full!
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I was a part of the medical community (no longer, thank heavens) so I am going to tell you exactly how it is. Your Uncle has multiple health problems if he is on dialysis and may also have dementia. He is being transferred from place to place probably because of reimbursement and his medical condition. It is very difficult to oversee someone from such a great distance. Not your fault - just the way it is. The sad truth is if you do not have someone advocating for you at your bedside, the ill family member is at the mercy of the health care providers. The doctors are burned out on the case obviously. They are not family members. You are really asking the right questions - I just don't know what the answers are in this case. It sounds like you Uncle does not have long to live. My prayers are with you I can see you are trying to do the best in a very difficult situation.
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I worked for a hospice a few years ago, though not in a medical position. We were non-profit and took anyone regardless of their abiity to pay. They had a multi-discipline team, social workers, medical, and spiritual. They were very good at sorting out all the legal, family and medical issues. Their #1 goal was the best interest of the patient, and they loved nothing more than getting someone stablized to a point that they didn't need hospice and could be released to the appropriate facility or even home.

I don't know if all hospices are as good as the one I worked for, but it might be something to consider. A DNR would indicate that he might meet the hospice admission standards, keeping in mind sometimes people get better when they are not over medicated. Hospices can be VERY knowledgable about the appropriate levels of medication. A they can be a great buffer to protect the patient.
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You don't have time to litigate. You've got to focus on his care. Just blaming people is not going to get you where you want to go. Like every other massive, complicated, and imperfect aspect of our massive, complicated and imperfect society there's an element of corruption and a large dose of craziness but it's hard on everybody in it. Nobody just wants to kill their patients. Even something like sedatives is born of a no-win situation: if a patient starts making noises and keeps the patient in the next bed awake all night, the family of the patient making noise can get all upset if the doctors give him sedatives and the family of the patient next door can get all upset if they don't -- and either way, both patients need the sleep. I'm not defending anybody, I'm repeating that it's complicated. You've got enough to do finding solutions. It's just so easy and understandable for all of us to confuse "Find a way through this maze" (which is useful) with "Figure out who to blame and blame them" (which is frankly not).
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Don't know what state he is in, but in CA there is no protection for any one over 79 (Men) and (80) women due to a California law called MICRA. Limits all injury claims to $250000 - but even if you have case - when they go to actuarial tables any man over 79 and woman over 80 is considered "dead" already. So even if you are 65 there would be little to recover and no lawyer is going to take case as a result. (Cost to litigate $50000 + experts ($5000+ each) - no profit
left when "award would be prorated to $-0-.
Look for the Department of Consumer Affairs in his state - re:medical problems.
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Also maybe try to call the Institutes of Medicine. They will let you know who doctors report to and may be able to help you find non-profits to aid your situation.
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Get an elder care lawyer - immediately.
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Wow, sounds exactly like what happened to my mom. They misdiagnosed her then drugged her up so kill her so we wouldn't have a case against (FL doctors are covered once the patient dies and only survivors are adults, who have no legal recourse against the hospital, doctors, nurses etc.). But there is more than one way to skin a cat. You seem to be able to at least contact the medical personnel so did some family member or your uncle put your name down as emergency contact? We drafted a letter and added names of people who were allowed to discuss my mom's medical issues (immediate family lived 800-1200 miles away). We then had it notarized and submitted it to the care facility. So you don't necessarily need to be a guardian, just a statement saying you are the "go-to" person for all the information. I say good for your uncle's maid for alerting you to his one situation. Does she have any authority to submit your name? The best thing is of course power of attorney, but if they are drugging your uncle, he won't legally be of sound mind to sign anything. We didn't have POA with my mom and it created a host of issues that we never recovered from, at least yet. The biggest is obtaining our mom's records. The idiots who were negligent, refuse to give us her records even though we have the right paperwork. So we have to get a lawyer in on it. Maybe consult a lawyer to see what steps you need to take before jumping into anything. There's no process to help family members get through things like this. It's all in favor of incompetent medical personnel. I wish you much success and peace of mind.
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It sounds like you are up against the stark reality that someone has to be in charge and advocate for your uncle. It's not strange, and the doctors are not necessarily being evil or evasive. They, like you, are dealing within the norms of a very complicated and in many ways out-of-control system. Everybody has their niche. A guardian or care manager is the closest thing to a person with an overview, and even that is not the same as having the power to make everything happen. If you can't be the guardian then you are asking the right question -- how to get one. Good for you for recognizing that reporting people to medical boards is secondary right now, finding someone to provide oversight is where it's at. You said you're long-distance, and the answer to your question is going to be specific to where your uncle lives. So look up the local department of elder services in your uncle's town (google, or call city hall). APS is a resource (= not just an additional problem!) Google "geriatric care manager" in that town. Not knowing where he is or what the financial constraints are, we can't say more specific that this for now. Good luck
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Does he have other relatives? How's about a geriatric manager? This is non-profit site that may be useful to you caremanager
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