How do I know when she’s serious about “wanting out”?

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My mother and I both believe in the right to die and have had several talks about it. My problem isn’t that she may want to die before dementia takes everything away as it did for her mother but that I won’t understand that she is serious when the moment comes. This is something we should have discussed years ago but we didn’t and now it just hangs in the air. What to do? What to do?

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I wrote an entire post as if you were talking about assisted death. So I'll snip that and just post the important part here:

This is what my province's (BC, Canada) rules are about consent in assisted dying. I would imagine they're similar to other places that have assisted dying:

"Medical assistance in dying can only be provided to persons who can give consent. Consent through an alternate or substitute decision maker or through a personal advance directive is not applicable. (If a person is capable of providing informed consent but is physically unable to sign a request, another person may sign the request under the patient’s express direction)."

source: https://www2.gov.bc.ca/gov/content/health/accessing-health-care/home-community-care/care-options-and-cost/end-of-life-care/medical-assistance-in-dying


But then I realized maybe you were talking about life support or life saving treatment, once your mom has dementia. All I can say is that I just (literally, last Monday) decided to stop my mom's dialysis and let hospice care take over, which is basically a choice to let her die a natural death from renal failure.

Everyone said I'd know when the time came, and I didn't believe them. But I do know, it turns out.

It came when she stopped getting any enjoyment out of anything. When I told her my brother was coming up to visit and she barely reacted. When I asked her how she felt and she stopped saying, "A little bit better today," like she always does. When the doctor told mom and I (last Monday) that dialysis wasn't really helping anymore and mom just looked at me. I just knew. (What I SAID was I had to talk to my brother before deciding anything, but I must have known even then, because I made the case to him that it was time.)

I worried about knowing when it was time, for ages. But now that I KNOW I know, I don't worry that it's the wrong time anymore.
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Gremlin Aug 19, 2018
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Be VERY careful Gremlin. You don't want to be accused of killing your mother!

Get a living will, ASAP, stipulating her wants. I had one done for my father and we stated in it that if he was asked if he wanted a medical procedure done, and he was unable to answer, don't do it! And I had it notarized! You don't need the state accusing you of euthanasia!

Also, stipulate that at some point in time, your mother wishes to stop all medications.

My dad decided to stop dialysis and I called Hospice immediately - they came out and interviewed Pop the same day and we discussed everything while he was still able to communicate. Without his medications and dialysis, he was allowed to pass peacefully 5 days later.

But get it all in writing! Cover yourself.
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Gremlin Aug 12, 2018
I wasn’t questioning weather I should have a hand in her demise but the seriousness of what she was saying. It’s a pointless curiousity now. She waited too long and can no longer make the decision for herself.

Plan ahead people . . .you never know when you’ll need it.
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Hopefully you have her financial and Medical POAs. My Moms medical POA stipulated what she wanted and didn't want. So that was pretty much her living will. A DNR was in place. Each hospital and facility had a Dr. sign a new one. (NJ now has its own form) So always make sure the EMTs and hospitals, rehabs and nursing homes have a copy. If Mom has Dementia/Alz I suggest never allowing a feeding tube. My RN daughter says once inserted very hard to have them removed. She has said a feeding tube has prolonged a life that should have been let go.

I read ur previous posts and you say Mom is declining. If you don't have Hospice you may want to consider it. They will evaluate Mom and if she meets their criteria, she will be kept comfortable.
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Reply to JoAnn29
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Dori, I don’t know if this will help any. I’ve always considered myself fortunate to have kidney disease. If I reach the point I am on dialysis I know that I will always have an out. The ability to stop my dialysis. My dad had kidney disease and liver failure. He refused to go on dialysis except for a very brief period towards the end of his life. After two weeks of dialysis he ended the treatment and died peacefully six days later. I believe if you know your mother is ready to stop treatment there is no problem. I know from what you’ve written your mother has had a long journey and it may be time to let her pass peacefully and end her suffering.
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Arleeda Aug 10, 2018
I definitely agree, Becky. My aunt refused dialysis after about three years on it and passed away quite peacefully and on her own terms. Another group of people who can go out when they choose are those with insulin-dependent diabetes, which a close friend did by not taking her insulin. My husband had a stroke and refused a gastric feeding tube, which seems to be peaceful for the patient although long and difficult for the family and friends. My plan is to stop preventive care for heart attack and stroke and hope and pray I will die from one of those before I get dementia! I have already stopped the blood pressure drugs and intend to stop statin as soon as current prescription runs out. ..I hate to waste anything! BTW I will be 81 next month, live alone and am fully mobile. I would like to die at 85 or before I develop dementia, which runs in my family and I have one copy of a gene that increases my susceptibility to Alzheimer's. My RN daughter has my POA for health care and knows my wishes.
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You have gotten many excellent answers from this site! I would agree that you should have Hospice come and evaluate her condition. I know personally when the dying process begins they lose interest in most everything, plus lose their taste and appetite if they are slowly dying. We healthy ones feel good if we’ve forced them to eat or do an activity because we think we’re helping, but in fact may just be prolonging their death.
Loving her to death has a different meaning when the end is near.
Hugs to you and you dear mother, and may God guide and comfort you.
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Does she have an Advanced Directive stating her specific wishes? Compassion and Choices has a Dementia Provision she can sign before she has dementia that if she is unable to feed herself, she wants not to be fed or hydrated.
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Gremlin Aug 12, 2018
Unfortunately the situation made itself quite clear over the last twenty four hours. Although she hasn’t been diagnosed yet there is no doubt that she has dementia. Even if she had been serious she simple can’t or won’t be able to make the choice anymore. Now it’s a matter of when my father will come to his senses and admit she needs more care than we can give.
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Very good advice from everyone here. I do think RayLinStephens' response that you need to document your Mom's wishes NOW is so very important. Even though you know your Mom's thoughts from prior conversations, having something on her wishes in writing and signed by her will provide you with clarity, and also protect you. I strongly agree that you should NOT take any action (or non-action) that will stop medical interventions if that has not been put in writing clearly as your Mom's wishes.

Fortunately, our family was lucky enough to have Mom's long-term family doctor bring up a DNR. My Mom's dementia diagnosis had occurred that year, and the doctor brought up the DNR form as a "must have" in a follow-up appointment after one of many hospitalizations. After giving Mom time to ask and answer questions about the latest hospital stay, the doctor took it on herself to tell Mom it was time to complete a DNR. She explained in simple terms that this was being done to let her wishes be made clear to the "medical folks" on what Mom's wishes were on measures to keep her alive going forward if her heart or breathing stopped.

She asked Mom a few simple questions about CPR, initiating use of a respirator or feeding tubes, then stepped out and returned with a basic DNR form. From Mom's answers then and prior conversations they'd had, she completed the form and had my Mom sign it before the end of that appointment.

I'm not sure if this answers your exact question, but 3 years later when paramedics were called to my 92-year old Mom's home by the night caregiver, I was very glad to have this form to answer their questions on the phone to me. The main question was about CPR and whether my Mom ever talked about her wishes. I was extremely relieved to have the clear DNR and to have had the family dr bring up this form when I was not able to.

Best wishes to you and your Mother.
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moecam Aug 11, 2018
I hope you thanked that dr because this is what will keep them doing that sort of help for others
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Has she completed her advance directive/living will?
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i am in the same situation my mother in law refuses to take her medicines she has been in and out hospital and rehab and has been released from there because she refuses to walk which she can she had a stroke 3 years ago sound mind all she does is sit in wheelchair all day we are now at the point all help is gone she has made this choice for herself not to help herself and refuses all the help and taking her medicine there is nothing more we can do rehab at our meeting had agreed that we can’t help her if she don’t want it She does have a living will so we are doing nothing to help her get up and move I will bathe her feed her and that’s it she has chose to do nothing to help herself we can’t force her after our meeting with the drs and staff the decision where made when she gets ill again there’s nothing we can do it’s a cycle with her and she knows what she's doing she has been to many specialist and the only issue was a stroke she does have high blood pressure reason for stroke but she refuses to take medicine she can walk and do for herself but she don’t
she was like this before her stroke and she continues to listen to help herself I sure don’t wish this on anybody
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I agree gremlin she didn’t plan ahead until after the stroke so now she does have a signed and notarized advance directive after the stroke after numerous times in and out of hospital and rehab we are done she has made the choice not to help herself and that’s her wishes so now I being her caregiver I don’t have to feel quiltly anymore it’s her choice I have done all I could and to have that reassurance from dr and staff so I agree plan ahead i have done so for myself so my children dont have to deal with what I have been dealing with in the last 3 years
good luck to you
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