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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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My son died at home after a long illness. We called friends and relatives first to invite them over if they wished to say goodbye. That was at 3 a.m. and they all came. When people had finished saying goodbye and we all did whatever we felt was necessary to let him go, we called the undertaker to come pick him up. That was about four hours later.
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I believe in some areas an autopsy is mandatory if someone dies at home when they aren't under hospice care. It's confusing what to do beyond calling 911 ir you don't have hospice. Paramedics in some areas can declare someone dead, but not in others. Transporting them to the er for a declaration seems a bit much, but you have to have a name on the death certificate. Dying is so complicated in these modern times.
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I think the whole police investigation is just normal procedure Book. Even if someone is known to be seriously ill that doesn't rule out that their death wasn't hurried along in some way, hence the investigation.
I would caution against calling too quickly, especially if you don't have the DNR instantly available. I know of someone whose mother was resuscitated by the EMS and lingered several days in hospital, a nightmare scenario.
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My bedridden mom wasn't in hospice care. When my siblings realized she died and her body was cold, they called 911 but not immediately. After sis answered the questions on the phone, 911 sent an ambulance and police. My sibling told me it was embarrassing because it wasn't just one police but several. It seems my sibling who found mom dead couldn't persuade my other siblings to come inside the house and verify that mom died.. .until an hour later. In their panic an hour later, they dithered on what to do. Finally, they called 911 anither hour later. It took them 2 hours after discovering her dead to make the call. Hence the multiple police cars sent along with an ambulance.

The coroner called me at work wanting to interview me about mom. After asking me some general questions (mom's history), he found out that I wasn't even home when mom died. He wanted to interview in person the person who initially found mom died. In the end, he didn't do an autopsy.

Whatever you do, don't do what my 5 siblings did - wait 2 hours before calling 911. I don't know if the 911 dispatcher would have sent a police if my siblings had just called immediately. But it sure made things look suspicious by waiting - if you're not under hospice service.
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Wherever you live there will be a protocol for an expected death in the home, you can probably find out from your doctor what is required in your area. Where I live we will call our nursing provider, who will in turn call the doctor/coroner and release the body to the funeral home. All of this is set up and signed for in advance.
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If you do not have hospice or a home care agency coming in, and you just suddenly find a loved one dead, you simply call 9-1-1. They will then help you walk through all you must do. Call family to be with you right away too....and be sure that you have any legal paperwork, like POA, Trustee, Do Not Resusitate orders etc, all present, so that when the emergency personnel show up, they know what all the wishes and desires are. If you've preplanned burial and funeral, have those papers handy as well, as they may help determine where the loved one is to be taken after pronouncement of death. If you believe that you are approaching this time, you might want to just put together a binder that has all these papers in it, so that it's easier to just find that one item too. If any agency is involved and providing caregivers, they will help you.
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I only know the rules for NYS but when a patient is with hospice the RN can certify the death and call the funeral home who will then come to the home. it is all very simple and the body may be left in the home for several hours often to await the arrival of other family members. If the loved one is to be embalmed the funeral home will want the body as soon as possible.
Hospice will instruct the family always to call the RN on duty and not 911. The nurse will come to the home and determine what further action is necessary or if she deems the patient needs emergency care will call or instruct the family to call for an ambulance.
It is not necessary to have police or medical examiner involved for hospice patients.

To the person who had respiratory failure listed on the death certificate, this is a common cause of death. That is what happens, whatever the cause at the end of life along with multiple system failure, heart, liver kidneys etc all stop. many times a death certificate will read "Multiple system failure secondary to cancer or what ever the patient had diagnosed for hospice admission. Does not mean anyone killed them.
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No police involved when Mom's DH was picked up. Onlyu morticians came to fetch his body, and we made phone calls to Hospice office, the funeral home that was to do the cremation [in his case]....Can't exactly remember if I went ahead and called the Non-Emergency Sheriff's line or not--I might have made a courtesy call, to let them know the mortuary was picking up Mom's DH, and that he'd been a home-hospice patient for 3 months. They write a report. They never came to the house, because everything had been planned ahead, paperwork and all.
Only if a death is deemed 'suspicious', unplanned, and/or has no pre-planning, no recent medical records of disease process and conditions. IF it's a dead body, with no known records, no health care track, and patient has not been seen in about a year or more, and/or death was "unexpected", then likely, almost guaranteed, police will get involved.
So important to plan ahead!
Make sure someone has a DPOA to speak for your care, etc.; make sure you fill out and have on file, and your Doc has it on file too, whether you want to be resuscitated, or if you want extensive measures used to keep you alive..or not.
Make sure you have medical trail of records, and have been seen by your Doc, tracking your health conditions, at least annually.
If one is seriously ill, and life expectancy is shorter, it is helpful to hook-up with Hospice. They really do help handle official processes, home health care, medicines, etc.
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If I die at home one thing I DO NOT WANT is for the police to be involved.What is the best way to prevent their involvement?
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...Oh--AND, I also called hospice, to let them know the body was being picked up and when. That is part of the process. All parties need to communicate clearly, so things keep on track.
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As soon as Mom's DH moved in with us for care help, we contacted hospice, and got him linked into their system.
They got a POA and a DNR form signed and on file, talking with Mom to help her understand why and what needed done.
Mom & I talked it out, and she chose cremation.
I located one that was affordable--at that time, American Creamtion and funeral charged about $700 [that was several years ago].
I took her to an appointment with them, to sign papers ahead of time, and I paid them in advance.
We kept the phone number for them on the refrigerator, easy to find.
When DH died, Mom wanted to sit with him for a time, and to wash the body. It was not hot weather, so allowing a few hours lag-time was fine.
I called that number, they contacted the mortuary, and the mortuary came to fetch the body and put the cremation in process.
I took Mom to pick up the ashes after the few days it took.

One glitch we had: our place is tiny.
There was no way a gurney could get in, so the 2 guys from the mortuary wrapped him in a sheet and a body bag, and carried him out that way.
While they did their work, Mom sat in the livingroom while i supervised the process--so they knew what they could take, making sure they didn't trip on things. Then I sat with Mom for some time.

It helps to discuss the grieving process ahead of time--again, hospice workers are helpful with that, too. Hospice nurses will come to the home to talk with the surviving spouse, if wanted---i recommend it.
Somtimes, elders do not process grief very well, and it comes out worse in their behaviors later, if they fail to do that adequately.

Details can vary a bit, but that is prety basically how it could go, just about anywhere, as long as paperwork has been done ahead of time.
Hospice helps greatly--they kow what is needed, and can often connect families/caregivers with services they need.

IF paperwork has NOT been done, officials require autopsy, unless a Doctor can certify the person was headed for death, and what conditions existed that would cause death.
If no paperwork exists ahead of time, there is delay between picking up the body and getting whatever mortuary processes need done. During that wait time, the body remains in cold storage at the mortuary.
This can add cost to the estate or the family.
OTH, family might -want- an autopsy, to learn exactly what caused death--even if the person was in hospice for known disease process.

No matter what, getting basic paperwork & plans done ahead of need, is best!
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Thanks for replies, which motivated me to contact her doctor about getting hospice care in place at home. I now have peace of mind that there will be someone to help me if my mom passes at home, which is likely at this point. They also had the DNR form for me to sign, so that is also taken care of. It is so good to have this site to get answers from those with experience in these matters.
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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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Spelling error: Correction.
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Spelling error: Corection: resuscitate.
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Most people DO die in a hospital or care facility, however, if your loved one should die at home, CALL 911.
Two reasons: 1) They may be able to recusitate. 2) They may pronounce the person expired. They will take the person to a hospital where the person will or may be classified as a DOA.
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God Bless you for doing this for your sister. We brought my mother in law to her home to pass and she was only home 12 days but it was the best thing I had ever done. I always felt guilty when she was in long term care but I couldn't take care of her in that point of her disease. We also had hospice so I was able to make sure that every need was taken care of and we gave her care that she could not get anywhere else. Also she had alzheimers but she knew she was in her home. The hospice nurse was in the tv room with her when she was passing but our dog realized there was a problem and he got me up in the adjoining room. The hospice nurse was sleeping also. I was able to awake the family and I got in bed with her and held her while she was joining our Lord. It was beautiful and I will keep you in my prayers. With the look on her face, I know she is in heaven waiting for us now. Mom also had more lucid moments than usual during those last couple weeks. She told me so many things I never knew and she also confirmed how much she loved each one of us. She knew what was happening and she was ready. God Bless you again for giving this gift to your sister.
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My father is 98 yrs old and even though he is failing, he continues to do most things as usual. In saying that, when I don't hear him in the morning and even thoughout the day I wonder is 'this the day' when he will pass on. I try to go over in my head as to what I will do first, who will I contact after calling 911 etc. Then I hear him...........
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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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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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I wondered the same thing. My Mom is also in stage 7 alz, but this stage can last years also. I did get a DNR but how do we know if they are really gone and not in a deep coma. I hope its that easy that they go in their sleep! I hear they get pneumonia or some infection and go that way, I have no idea.My Mom cant talk or walk and has problems swallowing, but she can laugh and understand a few simple things. God Bless her, I try my best keeping her laughing, clean, comfy, and full.
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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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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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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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The laws are different per state, so you may need to call 911 if no hospice is involved
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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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Your sister is so blessed to have you caring for her. I know it can't be very easy. But as far as when she goes, hopefully it will be peacefully in her sleep, for her sake and for yours. vstefans gave you excellent advice. God Bless you both. You are storing up treasures in heaven.
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Do NOT call 911 - there's too much of a chance they will try to revive the person regardless of whether of not you have a DNR. Call the funeral home. Generally they will ask when you would like them to come get the body. Some people like to have a bit of time to spend with the deceased for saying goodbyes, etc. There is no need to call 911 for a dead person...
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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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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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