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My sister, who lives with me, has late staged Alzheimer. Recently I have begun to worry about what I should do if she just stops breathing. I am her legal guardian and I know that she does not want CPR, etc. What should I do when she passes?

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Oldersister, you are very kind to take care of your sister. Some things to consider are whether your sister has medical power of attorney (POA) paperwork naming you as the POA, whether she has a do not resuscitate (DNR) in her living will and whether your sister is under any in-home care, such as hospice or visiting nurses association. These questions need to be answered first because a funeral provider cannot come to the home without a coroner being notified on a home death. If a visiting nurse is involved, they can call the coroner and notify the funeral provider, otherwise, you should call 911 to call the coroner to let them know your sister has passed away. The coroner would then come to the home and release her to the funeral provider.
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if your sister is that late stage tell her doc to get hospice in there. my mother is drawing her last few short breaths right now and 4 days ago hospice brought a continually inflated comfort air bed and liquid comfort meds. hospice can walk you thru many facets of end of life care to include advising you on legal matters. hospice have been a pain in the ass at times but overall they have end of life down to a science if not a thing of beauty.
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Other posters have answered the question to the best of their abilities BUT the law and regulations vary from state to state and even county to county.
The most important thing is to make sure there is a DNR. Have the patient or their representative sign it well ahead of time. Make several copies and post them in prominent places around the home.
The next step is do not panic or allow anyone else to. A death in the home that is expected and has a DNR in place is not an emergency. Having Hospice in place will ease the burden. I can only speak for my part of NYS but a hospice RN can pronounce a death in the home and call the funeral home when the family is ready and I do stress when the family is ready as many times they will want to wait several hours for a distant relative to arrive. The hospice RN will notify the patient's MD and the funeral director will take care of obtaining the death certificate.
Having friends who may have to deal with an at home death without hospice I have suggested that they wait an hour before calling 911 and when the ambulance arrives inform the EMTs the actual time of death and show them the DNR and hopefully they will respect the family's wishes. Unfortunately the police will be called and the medical examiner will have to confirm death before the funeral home can be involved.
How do you know when someone is actually dead and not just in a deep coma. all I can tell you for sure is you just know. Check for a pulse in the neck, listen to the heart, if you don't have a stethoscope just put your ear on the chest and do the same with the belly. People who are sensitive to psychic or spiritual matters may just feel the life, soul or however you want to describe it leave the room. Some people even open a window so the soul can leave. Most home deaths are very peaceful and quiet but I can't guarantee that. Even in an unconscious state some loved ones want to die alone and wait till everyone has left the room. If that happens please don't feel guilty and wish that you had stayed a few more minutes. Others will stay alive against all odds for special reasons, like waiting for the birth of a new grandchild or a son to get home from the military. Death is a part of life and we leave this earth in different ways just as we come into it. death itself does not seem to be frightening it is the events leading up to it that makes people fearful so try not to do it alone and you will be doing the most loving thing you can do for an elder to let them die at home with dignity.
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In our state, ARIZONA, we were able to get a HOME DNR paper....from Dad's physician. It's printed on bright orange paper, and is signed by the doctor, and the patient if possible. We wrote in my Dad's description and could even include a picture of him. The form assures that if you call 911 and emts come, they will only provide comfort measures and will only transport to the hospital if you want them to do so. So for example, there is a fall and stitches are needed...but that is all....they may recommend emergency room treatment. The orange form has followed Dad to all hospitals and each of the 3 memory care facilities he's been in so far. I do agree that it may be time to have hospice involved at home. Start by asking the MD about it. There is a lot of both physical and emotional support provided to both of you by having hospice involved. They would likely have staff show up and help you with making the calls and getting you through that adjustment period. From my perspective right now, though....I say the FIRST thing you should do is get on your knees and THANK GOD that she was able to be in her own home or her own bed when it was time to leave this earth! That seems to be what nearly EVERY elderly person wishes for! I had promised my Dad that we would never place him....and it was terrible when it came to facing that we could not avoid it with him. He seems rather lost where ever he is at....but no longer can even remember his home. I don't think he would know he was home if we brought him home now. In his mind, other places from way back when are 'home' now.
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My SIL was living in our home (in Florida) when she was diagnosed with stage 4 liver cancer. When she came home from the hospital, my husband and I were terribly inexperienced at end of life care giving. I tried to get hospice involved before we left the hospital, but the Oncologist said she wasn't ready for hospice. This was within an hour of the nurse telling me to gather her family, because she maybe had two weeks. I had a meltdown trying to get the morphine prescription filled (she was on medicade), so I called hospice anyway. They were incredible. My SIL could not walk (cancer had spread to bone marrow in foot). The hospice doctor and nurses came to visit her daily. She did die, in her sleep, within two weeks of returning home. As soon as she passed, we called hospice and a funeral home. Hospice came to the house and then the funeral home came and took her body. No DNR posted on the door ( I guess possibly hospice had gotten one when they started, but I was to shellshocked to remember) no cororner, no ambulance and no additional trama. The hospice personnel were angels from heaven.
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I think of this every morning as I walk down the stairs. I pray she dies in her peaceful sleep, but NOT YET!
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Call 911 ...Make sure you have her DNR with you when they come and make sure you are listed on her health care proxy... They will bring her to the hospital and then you can call whatever funeral home you want to bury her...
I am so sorry you are going through this, my heart aches for you both..
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As hard and awkward as it seems to admit it, it will happen. There are good and bad things about it happening at home...if it does, you want to know what to do and that is totally appropriate even if it feels weird or macabre to think about. I like the Consumer Reports checklist the best - go to their site and search for "What to do when a loved one dies." You take a few minutes for yourself first, and then you get on the phone...hugs.
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My BF is an MD who is called frequently by the local police to pronounce someone as passed when it happens at home. So depending on where you live, if hospice is not involved, an MD or coroner has to pronounce the person as dead before a funeral home can remove the body. Just make sure, as said before, that you have a DNR, not the same as a living will, signed so that noone will try to resuscitate her. I agree, though, to call her MD and see if she qualifies for hospice and then they take care of that part and all you have to worry about is the funeral home. Good luck. Kuli
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If hospice is involved, you contact them. If they are not involved, call 911 for the paramedics and an ambulance. As mentioned before, have the DNR ready for them. Most will respect it. Some EMTs are even able to declare death. One consideration for someone dying at home is getting the death certificate signed. Having the remains removed from the home without going through hospice or a hospital can cause problems in settling insurance and the estate. These times are difficult. Figuring out how it will be handled will take much worry off of your mind.
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