End of life care. Any advice?
My 96 year old mom is terrified of dying. How can I help her face this inevitable demise of all people ?
Some background; she’s very good at denial, and has been most of her life. Typically seeing only what she chooses or wants to see. Do I just let it be ? She goes to ERs so often, usually with no significant findings. Seems to me she is not facing reality. Someday she’ll “cry wolf” and won’t get the serious response that may be needed because of this history. All local hospitals have seen this pattern. BTW, she’s had extremely good health until the last two years. Now Failure to Thrive, recent mild MI, recent pneumonia, chronic kidney disease, marked anemia, depression, Macular Degeneration both eyes, recurrent UTIs, chronic diarrhea with incontinence, and more.
She still requests a “full code”. I have suggested changing this on her living will, but so far she has not done so.
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If she still says yes then you have to accept that choice, but as her medical advocate if she is incapacitated know that doctors will still look to you to make the final decision.
Yet she told me about having nightmares about dying.
Hospice became involved at the end, so she HAD a to sign DNR, and she did so.
She never spoke about her wishes for “after death plans”, for her body. When hospice or I even touched on the “possibility”, she went silent and withdrawn. At their advice, I let that be. And I learned that it’s not unusual for some people to never verbalize their “after death preferences”.
At the very end, she was not overly anxious. She gradually became less responsive over her last two days. It was relatively peaceful, but with some assistance of medication.
I appreciate all who offered any help. It’s now over. She died in May 2023.
I am enormously grateful that my parents didn’t fear death. They were at peace with death. Dad was 85 and mom was 95.
Wishing you peace as you continue forward.
I suspect OP’s mom has no religion/faith to give comfort at this point in her life.
For my grandmother, her ¨why¨ is that she has decided conversely that we would all be lost without her (but also says regularly that no one needs her) and that she must continue to stay for all of us. Much of this stems back to when my grandfather was very ill and I think she still (15 years later) harbors a great deal of resentment towards him for leaving her when he passed away. She stayed by his side in the hospital for a month and refused to leave. We all knew then that he didn´t want to go in front of her. And we also knew she wasn´t leaving for that very reason. His doctors begged her to go home just for a bit, I can´t even remember how they got her to home now. But as almost as soon as he knew she was away from the hospital it was like he was free to take his last breath. And I do think she has been angry about it ever since.
I think that's part of why she is afraid of death. She´s afraid we won´t be ok without her. Part of her is afraid of leaving her life behind - although she hasn´t lived much since he died. But I also think she is afraid of the actual process of dying. Sort of the opposite of your mom, she actively avoids doctors because I think she is afraid of what she will find out about her health. My mom has to force her to see the few that she will actually see, and if we have to take her to the hospital at any time I think she will fight us tooth and nail because we had to intervene and take my grandfather to the hospital that last time because they were actively avoiding it and he never came back home.
I think to some extent, fear of your own mortality is natural. I think all of us have it a little bit. On the other side of the spectrum, there is actually a fear so extreme, called thanatophobia, that is an actual anxiety disorder, where it interferes with every aspect of a person´s life to the extent that they don´t even enjoy their lives for fear of dying. So I guess there is a continuum like everything else.
It sounds like, based on the fact that she requests a ¨full code¨ that a big part of her fear is the process of dying in an emergency situation? Does she really know what that looks like? For a lot of people, all that they have ever seen is on TV, and people seem to bounce back really quickly from the defibrillator or CPR with a shocking deep breath and they are smiling and hugging their family and just on oxygen rolling out of the ER a few minutes later. What so many people don´t seem to really understand is what a ¨full code¨ can actually do to the body in the effort to save them.
I mean they are certainly necessary and life saving, don´t get me wrong. But during the process CPR can break ribs and cause severe pain. Defibrillators can actually cause damage to the heart muscle. It is exactly why doctors try to subtly talk to patients in the hospital, and their families, especially if they have certain illnesses, are terminal, are over a certain age, maybe are morbidly obese or extremely underweight, about the potential risks of having to take all lifesaving measures. Because in the process of trying to save their lives they can potentially do damage. And their oath, ¨first do no harm¨ indicates that they let people know that in trying to help they can actually do harm to you.
It is certainly her choice, but I wonder if she has the full picture of what she is asking actually means or if she has the idea that saving her life would bring her back to exactly where she is now. And doesn´t realize that in saving her life that she might not be returned to the same physical or even mental state that she began. There are always risks. I´m not suggesting you scare her, just that maybe she has an idealistic picture because she is scared of the alternative.
The way this occurred from your grandparents is VERY common. I’ve been present with a couple people who were very near death. Often, they waited until any one who was present stepped away. It seems like they want or need a little privacy for the very end. Hospice staff also confirmed to me that this is not unusual.
In my mom’s case, I was with her for most of her last day. Then I had to step away for a few hours. That is when she actually passed.
I think, no matter your personal beliefs, death, being the ultimate end for all of us...we still have a measure of the 'what's beyond this life?' and it can be very scary.
You can't give mom deep religious or personal beliefs this late in her life. But you CAN assure her that you will all be OK when she dies (don't say 'if' you die, as if they are going to be around forever)..that you'll always remember her and value her life and love, etc.
Telling her about the indignity of living a few more months or days or whatever after a 'full code event may help sway her, or it may make her more anxious.
In the meantime, maybe a very mild tranqilizer could help her to not carry that worry around with her.
My MIL is also terrified of dying. She has stated over and over that she has to live to '99-1/2' because her kids would not be able to go on without her. Believe me, her kids will be just fine when she goes. Neither my DH or his brother are in fantastic health and the possibility of them preceding her in death is a very possible scenario. She had them when she was 18 & 20, so they are in their 70's themselves!! She's 92 and the only 'health' problems she has are all mental issues. She takes one baby aspirin a day and her doc put her on a tiny dose of Valium b/c her anxiety was through the roof.
I recently lost my mom. She died without fear and I know that the day she died was one of the happiest days of her life. Knowing that sure made it easier on us kids. She had a DNR and went gently into that goodnight.
Other than reasuring her you just want what's best for her may be helpful in the long run. Hopefully when her time comes, she will be blessed with a quick and painless death. You can't worry about that now.
If a competent person wishes to be a full code, then that should be his/her right.
I don't know if you are the next of kin or the MPOA, but once things have gone to a place where it is no longer possible to prolong life without great injury/suffering the doctors will let you know this, and no matter what the advance directive says they with not do heroic measures that would injure with no likelihood of saving.
Otherwise, I would not speak of death overmuch to your mom. She is in denial. She may not, with the changes you speak of, be entirely in control any longer of all faculties, as well. She is made uncomfortable by the thought of death, and in this she is far from alone.
As to the frequency of hospital visits, at her age one hesitates to say "No, mom, there's nothing wrong with you; you can't go to the hospital". Because at her age, and with the illnesses you tell us of progressing, there may well BE something wrong.
Until you as her next of kin or POA are approached by medical to do something other than ignoring all this, I would leave this in your mom's hands. She may be having some dementia, she may be suffering from some form of Munchausen's, or she may simply be afraid of death and imagining the grim reaper to be round every corner. But whatever is going on it is unlikely to be something you can change while she is not considered incompetent.
I am so sorry for her worries, fears and anxiety. And for your suffering in watching it. I hope things will get better. Meanwhile I would allow her to speak, and attempt to agree with what she suggests is right for her.