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I am 81 years old, and am primary caregiver for my 62 year old daughter who is under hospice care in my home for the past eight months. She has end stage COPD and CHF. Her disease has rapidly progressed to where she is now totally bedridden, unable to walk or care for herself. She is on a Trilogy Machine for her breathing. In the past two months, she has developed dangerous behavior problems. She has a strong will, and can be very overpowering when she has these events of being not in her right mind. She accuses me of trying to kill her with medicines, refuses her medications, screams at the top of her lungs for help when I am not even near her, and I am honestly very afraid of her. I spoke with hospice and they tell me I cannot "quit" being her caregiver. They say I am her legal guardian just by being primary caregiver and I can be charged with the crime of abandonment if I refuse to keep her with me. She cannot be placed in a nursing home due to Medicare guidelines on her trilogy machine, cannot have respite care for the same reason. I am at my wits end and seriously afraid for my safety. These "events" are becoming a regular pattern of every two to three days..mainly at night time hours. I had no idea this is what I would be facing. What are my legal rights or obligations? I thought I was just helping out my daughter, but it has spiraled out of control and is very scarey. Any ideas or input?

Talk to the Social Worker or the Nurse that you have through Hospice.
They can try to find other arrangements.
Most Hospice will have an In patient unit where they can place patients for one of several reasons.
1. Respite ..You can tell the nurse or Social Worker you need Respite. Medicare does provide this as part of the Hospice Plan.
2. Symptom Management.... This can be for pain, aggressive behavior where your daughter could be of harm to herself or to you.

And you do have another option. If you are her legal Guardian you can petition the court and say you can no longer be an effective Guardian and the court will appoint someone. Tell the court that you fear for your safety and that you can no longer fulfill your role
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Reply to Grandma1954
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Thank you all for advice. I have contacted hospice today..had very good return on call. They doubled the dose of medicine to calm her..and are expediting efforts to get her permanently placed in a trilogy/vent qualified facility. She is first on wait list in one, and they are actively searching for other facilities. They want her to be where she can have proper nurse care around the clock, as well they recognize our limits and our need for relief.
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Reply to ABCaregiver
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Countrymouse Dec 15, 2018
I am so relieved for you. Hope things happen very fast.
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Having an obligation to not abandon her - meaning you can't just take off and leave her without any other care arrangements - does not make you her legal guardian. This hospice group sounds like a bunch of worthless boobs who are doing nothing more than the bare minimum, the others have given you some good advice.
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Reply to cwillie
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She is on hospice and on the trilogy. Medicare won't pay for trilogy in a nursing home? Is that because trilogy is extending her life?

I would call an elder law attorney for help on legal issues. I understand the abandonment part, kind of. But, what I do not understand is that she HAS to be kept in your home. I would be looking for another place to live. A psychiatric hospital would do an assessment to help find meds that help her behaviors. Then refuse to take her home.
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ABCaregiver Dec 15, 2018
No. Medicare will pay, but only if a qualified P/T is on staff for trilogy. Just received word she is first on a wait list for a trilogy/vent bed in a qualified facility.
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Try calling 911 if you are fearful of her. Tell them you are rescinding the hospice and DNR orders. Once in the hospital then tell them you will not take her back for fear for your own life. The will have to restart the hospice orders and place her in a facility.
It sounds like you were bullied because of the Trilogy order that no place will take her. That machine is complex like a ventilator and users need to take competency exams. You probably should have told them to keep searching for a place on their own.
IF that does not work, Then pry the legal route
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Reply to MACinCT
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Escalate this with your hospice provider = keep asking for the next person up the food chain until you get sensible answers.

I expect this is to do with a further decline in your daughter's brain function, though I'm only guessing. If you don't get anywhere with hospice, abandon hospice and call whoever px'd the breathing apparatus.

In any case: the role of hospice is to ensure the comfort and peace of mind of people who are dying. Your daughter is suffering mental torment. So - where are they? Disgraceful, their response to you has been.

When you say you are afraid for your safety, is that because of the mental and emotional stress you're under?
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ABCaregiver Dec 15, 2018
No, in answering your question as to being afraid for my safety. When she has the behavior issue, she is getting more combative..and is much stronger than i am. I am afraid of what she might do
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Great! Not that your old...but at 81 you can't do what you did 10 yrs ago. The strain on anyone is not good.
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peggy40 Dec 15, 2018
I'm 62 and being poa for 81 year old mom is way more than I can manage and mom is in an excellent nursing home. The emotional side of her care is hard enough even with her being in the nh.
Please take care of yourself and let others help you care for your daughter.
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I’m not sure. Maybe you could call a different hospice company and discuss your daughters situation with them?
Have you spoken with her doctor?
I suppose you could also check with Adult Protective Services If you fear for your life.
I’m sorry your daughter is in this terrible situation. I hope you find help.
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Reply to 97yroldmom
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ABCaregiver,
What I'm about to say isn't truthful but it can get you out of the situation.
Make up any physical ailment (heart/chest pain, fainting, etc) and call hospice. Tell them you're going go to the Emergency Room. Then, tell them your daughter is alone at home on the Trilogy. See what they say. Then GO to ER and, when you've checked in, tell the hospital Social Worker about her too. I guarantee something will be done!

However, if you can control her aggressive behavior with medication, better. As an old hospice nurse, your hospice should be able to give you medications to keep her calm (benzodiazepines like Ativan, Valium, etc.). If you see her becoming agitated, give her one. If it doesn't sufficiently calm her, call hospice to increase the dose. It's not unusual for end stage COPD patients to get agitated.

You need to do what you have to do to keep her relaxed and you safe. I'm sorry for you both. God bless you for doing this hard job in your 80's.
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Reply to SueC1957
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Added to original post...forgot to say...i have no power of attorney, no guardianship, nothing signed in hospice papers so how can it be a legal issue?
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