She is on a feeding tube, catheter, colostomy bag, and ventilator/trachea as a result of an auto accident. She suffered a broken neck, broken hip, broken nose, etc. in the wreck. When admitted to ICU, she had to be put on a ventilator. She also has to be restrained as she will pull out the ventilator/trachea if loosened. She suffered a stroke about 5 years ago and does not understand to leave it alone. The facility (Regency Hospital) says she is stable and needs to be in home care and I can be trained to take care of her needs with the equipment. I am over 70 yrs old and in and out of the hospital myself with diverticulitis. I have been her caretaker since her stroke and cannot take care of her any more on any longer. She needs 24/7 care with all the equipment/hookups. I can not give that. The Regency says no facility, rehab, nursing home, etc. will take her with the restraints so I have no choice. I do not know what to do. Is there any facilities that will take restrained patients. I read the codes/laws and it appears that restraints ARE allowed with a written medical plan to treat and wean off restraints and is medically necessary. This is definitely necessary as she will harm herself to a point of death if she removes the tubes. I don't know why all of the medical staff say restraints are against the law--there are provisions for restraints in the law. The CEO, doctors, nurses, and staff at the hospital recommend I sign a DNR to let her pass. She has an alert mind and she recognizes family and friends and is not ready to die. I just do not know what to do: I thought the elderly were supposed to be cared for in this country but Medicare and her supplemental BC/BS insurance has ceased although they still take her monthly premiums from her social security check deposits. If they don't pay anymore why do they continue to charge? Something is not right with all of this. Are there government agencies that can help out in my situation?
I for one would not want to be fed on one end and waste removed by tubes two ways on the other end. She can't even breathe on her own. She has to be restrained to leave these in place. Me? I'd be pulling those out to end my life naturally. If I can't breathe and eat on my own, I don't want to keep going. I would have a minimal quality of life staring at the ceiling, and I'd rather be in heaven.
With an advanced directive on file, I would not have had those interventions to start with. I would want my family to realize the auto accident was the cause of my death, not them deciding to unplug a machine or withdraw my restraints so I could remove these things myself. Making a decision to unplug the machines would be very hard on who ever makes that decision to unplug her machines. However, I would hope the docs would give me an anti anxiety med and maybe morphine and allow me to unplug myself. I don't want to be kept alive by machine.
One way to avoid making these decisions yourself is to ask that the state take over her guardianship. They will then make decisions for her care and you will not be responsible for anything that happens.
Can your Mom qualify for Medicaid? The hospital social worker should be working with you to qualify your mother and help you find a placement. If that's not happening, maybe you need to contact council on aging.
I think you should also take a deep breathe and really consider your mother's status and future. On the one hand you state your mother needs to be restrained because she cannot understand not to remove the ventilator/trachea tubes because of a stroke she had 5 years ago. You also state she "...has an alert mind and she recognizes family and friends and is not ready to die." Although those statements are somewhat contradictory, they can both be true. But maybe they reflect what you want to be more than what reality is.
Is your mother still able to speak? Or does the ventilator prevent that? Why does she still need a ventilator 9 months after the accident? Will she require the ventilator indefinitely? Have you been able to ask her if she wants a DNR?
If Mom's mind is alert then she spends her days with a good view of the ceiling? Unable to read a book or even watch TV because of the restraints? Unable to enjoy a meal or a conversation with visitors or nursing staff?
I know how hard it is to even consider letting go, but letting go is not giving up or discarding your mother. It would only be an acknowledge that the accident took your mother's life in slow painful pieces. It could be freeing her spirit from the constraints of a failed physical body.
I think the hospital people are probably giving you their best advice, but I also understand they have a vested interest that might make it difficult for you to accept that advice. I would encourage you to talk with a minister or engage a councilor. If you have a cousin you could talk with that might be even better. I have found that cousins know the family culture but are not as emotionally invested in your parents, so they can see things more objectively.
God bless you for the five years of care giving you provided your mother following her stroke and your loving concern during her long hospitalization.
Medicare, like all insurances, has a maximum benefit period for hospitalization. Apparently she has exceeded that, which is why they've stopped paying.
Have you looked into getting Medicaid for her? That would pay for long term care.
Start by calling the local Area Agency on Aging and ask for their help.