Dear Barbara, my mother has progressive cancer. She has refused hospice because she wants to go to the emergency room if she needs to. We’ve had hospice for two other family members and they were wonderful. I am so disappointed she won’t accept their help. I need their help. She lives alone. I live several hours away from her. Currently I am driving those hours (each way) 2 to 3 times a week. Her condition is deteriorating. She has strongly told me she does not want to go to a nursing home or be “put in the hospital” yet she will not sign an advanced directive. As hard as it will be, I see moving in with her at some point to take care of her. I will honor her wishes. My question is when the time comes and she dies in her home, who do I call? 911? Will they try to resuscitate her?
I am so sorry your mother has put you in this situation. From what you have described, I don't suppose it would make a difference if you said, "Mom, I can't do this alone. I need help and hospice can give it to me. I want you to be able to stay at home but I need help to do that for you," but give it a try.
Tell her honestly what you are feeling and ask for help. Just FYI: she can sign on for hospice and if she felt she needed to go to the emergency room, you could just call 911 and revoke the hospice benefit from the ER later. (We don't always have to play the rules.)
What about considering Palliative Care? It is for patients and their families when cure is challenging and a person is not ready to stop pursuing treatment. There isn’t financial help for palliative care like there is for hospice, but if you can afford it, the supportive guidance can be a huge help. Palliative Care would be able to answer your questions about what to do when she dies.
As to who you should call when your mom dies, each state is different so I can't give you an answer. Do an internet search of "what to do when someone dies at home from a natural illness (put in your state)" and see what it tells you. You can also call the funeral home you are going to use and ask them what to do. Or ask your physician. You can even call the Health Department.
Another option is hiring an End of Life Doula who can support both you and your mother, beginning now before you have to move in with her. The Doula could be a daily touch point checking in on, visiting with, and observing your mom. She would be your eyes and ears while you are so many miles away.
When it is time for you to move in with your mother, the Doula would be there to guide and support you much like a hospice would (again, without the financial assistance Hospice gives). Your mom might be more receptive to this one person instead of an agency. An End of Life Doula would be able to be with you when your mother is actively dying. She would also know who to call.
This is the “precious time” you can have with your mom but you need help to give her your best.
Something More... about What Do I Do? Mom Has Progressive Cancer and is Refusing Hospice
When caring for someone facing end of life, you need to know the signs of approaching death so that you may provide the best care possible for your special person. I encourage you to keep my booklets close at hand. Particularly the guidebook, By Your Side, A Guide for Caring for the Dying at Home. Here is a recent review:
"Sent to friend whose dad was dying, she was a first time hospice experience. This book was incredibly helpful to her in this last journey with her dad. I am so grateful to have this as a resource to send to friends and family who are walking this path for the first time and by themselves. Thank you Barbara, you are a gifted healer." -Lee T.
4 comments
BK Books
Doug, thank you for sharing. Blessings to you in the work you are doing. Barbara
Doug, thank you for sharing. Blessings to you in the work you are doing. Barbara
Jayne Reed
Do they have Home Hospice where the writer is? My mother did that, and it was wonderful. She had 24-hr nursing coverage in addition to her aide, which meant that I didn’t have to move in until the last month, although I don’t live far and was able to spend the night frequently.
At first we had the charge nurse visiting once a week, then we had a nurse during the day, and then 24-hour nursing coverage.
To tell the truth, my mother was out of it the last couple of weeks and wouldn’t have been able to get to an emergency room. This meant that the hospice nurses spent most of their time explaining things to me like what was happening, what I should do, etc.
For myself, I have a horror of being found decomposing in my apartment only because my neighbors complained about the smell. Even if I had to go to a facility for hospice care, I would rather that!
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BK Books replied:
Thank you Jayne, for sharing your ideas. Blessings! Barbara
Do they have Home Hospice where the writer is? My mother did that, and it was wonderful. She had 24-hr nursing coverage in addition to her aide, which meant that I didn’t have to move in until the last month, although I don’t live far and was able to spend the night frequently.
At first we had the charge nurse visiting once a week, then we had a nurse during the day, and then 24-hour nursing coverage.
To tell the truth, my mother was out of it the last couple of weeks and wouldn’t have been able to get to an emergency room. This meant that the hospice nurses spent most of their time explaining things to me like what was happening, what I should do, etc.
For myself, I have a horror of being found decomposing in my apartment only because my neighbors complained about the smell. Even if I had to go to a facility for hospice care, I would rather that!
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BK Books replied:
Thank you Jayne, for sharing your ideas. Blessings! Barbara
Rahab
This is a difficult time, the daughter knows what is best for herself and her mother. The ball is in her court in a sense. She needs help, get help. Her mother will respect her taking charge, knowing it is in her very best interest, she must trust the process, that at some point, a sense of release is needed so that she can relax. Place her life now into the hands of a loving daughter and a loving & caring medical assistance provider {hospice} who offers comfort care and support for the “family”. Calling hospice is not “the end”, its apart of transitioning from one lane on the freeway to another…someone has to drive, you both know the destination, but no one knows how long the trip will be. If you pray and God sends help, that’s an answered prayer. Help is lifting the load, if it’s heavy enough then you say “thank you” for the relief.
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BK Books replied:
Thank you for your comments. Blessings! Barbara
This is a difficult time, the daughter knows what is best for herself and her mother. The ball is in her court in a sense. She needs help, get help. Her mother will respect her taking charge, knowing it is in her very best interest, she must trust the process, that at some point, a sense of release is needed so that she can relax. Place her life now into the hands of a loving daughter and a loving & caring medical assistance provider {hospice} who offers comfort care and support for the “family”. Calling hospice is not “the end”, its apart of transitioning from one lane on the freeway to another…someone has to drive, you both know the destination, but no one knows how long the trip will be. If you pray and God sends help, that’s an answered prayer. Help is lifting the load, if it’s heavy enough then you say “thank you” for the relief.
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BK Books replied:
Thank you for your comments. Blessings! Barbara
Jennifer Schwarz
Talking with Mom and her PCP about a POLST could be really helpful if Mom doesn’t want life prolonging measures. Here, in Hawai’i it can get sticky with the police if someone dies at home and Hospice is not involved and there is no POLST. The Medics would try to revive the person, and if they are called too late for that, they will not be happy. Knowing the legal procedure in your state can save the grieving loved ones some real heartache in the moments after death to avoid having to convince the police that there was no foul play. Our local Hospice is ok with going to the ED at the hospital and then re-enrolling with Hospice services after coming home. That too seems to vary community to community. Caring for our Moms at end of life is one of the hardest and most rewarding times. My heart is with you.
Jen
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BK Books replied:
Thank Jen for your comments. Blessings! Barbara
Talking with Mom and her PCP about a POLST could be really helpful if Mom doesn’t want life prolonging measures. Here, in Hawai’i it can get sticky with the police if someone dies at home and Hospice is not involved and there is no POLST. The Medics would try to revive the person, and if they are called too late for that, they will not be happy. Knowing the legal procedure in your state can save the grieving loved ones some real heartache in the moments after death to avoid having to convince the police that there was no foul play. Our local Hospice is ok with going to the ED at the hospital and then re-enrolling with Hospice services after coming home. That too seems to vary community to community. Caring for our Moms at end of life is one of the hardest and most rewarding times. My heart is with you.
Jen
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BK Books replied:
Thank Jen for your comments. Blessings! Barbara