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What is more humane - locking 96 year old mom in a secure facility and drugging her to the point that she can't function from deterioration of Lewy Body Dementia (hallucinations, delusions, paranoia, fear, etc.) having zero quality of life, or instituting the VSED method to pass peacefully with dignity? https://compassionandchoices.org/our-issues/vsed



This is where I am with her palliative care doctors. Mom's symptoms aren't just sundowning - she is daydowning and sometimes it's 24/7. If I can't help my mom in this regard, one thing I am going to do is make sure my wishes are met when my time comes. I am already displaying very early signs (same age that mom started - 72), and with more than 80% of my DNA coming from mom, I'm sure I will be facing this one day, but most importantly my kids won't have to make these decisions because I'm making them now for myself.



Thanks for the space to rant!

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A nursing home doesn’t mean she’s thrown in a dungeon and rendered comatose or insane. Hospice is what she’d need. Hospice doesn’t kill people. It’s to make a person comfortable and with as little mental or physical pain as possible. Seems quite compassionate to me.

Dying with pain management is hardly ‘without dignity’. I don’t see how VSED is any more dignified a death. If anything, it’s more like martyrdom. Suffering does not make one’s death more dignified.

If a person chooses to die via VSED, fine. Just saying it’s not the easy or less traumatic way out.
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I don't think you can make the decision for VSED your Mom needs to be able to make that decision. If the doctors take it upon themselves to hold back food or you and the patient is not actively dying, to me, that's murder. Now if Mom is actively dying, she can no longer swallow and her organs are shutting down, trying to feed her does more harm than good. This is allowing nature to takes its course.
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VSED chosen by an individual is their choice. Someone else instituting VSED for them is murder. It's your Mom's choice whether she wants VSED. Get her on Hospice if she is dying or needs pain control. A facility is not a prison and she will not be drugges to death.
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I agree that mom should make that decision. Hospice is much 'kinder', I think starving to death would literally be painful.

Curious as to how 80% of your DNA comes from mom?
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freqflyer Aug 2022
I also was wondering how 80% of one's DNA comes from one parent. Never heard of that percentage.
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Isn't VSED supposed to be...voluntary? If you're instituting it, then it's rather involuntary. If she doesn't eat, that's one thing, but it seems that you are suggesting that food and drink be withheld. Not sure would be legal, easy, peaceful, or dignified. Also, if she is so incapacitated by hallucinations, delusions, paranoia, and fear, wouldn't it be a kindness to offer her medications to alleviate those symptoms. It may be that hospice is the the way to go.

As for yourself, make it clear to everyone who is likely to outlive you that you that you wish no efforts in extending your life. You may want to discuss visiting one of the states in which death with dignity is offered.
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Thanks for all your answers - it was hypothetical question. I know mom would have had to choose VSED before her mind deteriorated. I only learned about it through her process. She does not qualify for hospice. She is in a hospital now, but can't be released back to AL because its not secure and can't put her in memory care bc she's on PRN meds. What??? Yes, they will drug her to keep her 'level'. As far as my ethnicity I share 29% and 52% of my mothers heritage and only 4% of my father's. Regarding VSED, it's not murder - it's legal and a choice everyone can make for themselves. I suggest reading (a pdf download) of Journal of My Mother's Death by Marcia Sloan.
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I am so sorry. What would be most humane would be access to an easy final exit. But it isn't available and isn't in most countries once one has passed into deep dementia and cannot express their wishes. Make yourself a good advanced directive expressing your wishes now (you can write your own addendum affixed to the document).
This is dreadful to see, but unless there is medical reason a person cannot sustain or take nourishment, there is really no way an MD can legally withdraw food and water. I know you will have heard the arguments about the slippery slope of families deciding when life sustaining measures are withdrawn.
My heart goes out to you and I hope Mom is soon at peace. My bro was diagnosed with early Lewy's at age 85. In all truth it was a relief that he died of sepsis before Lewy's could work its wonders. For him, and for me as well.
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Maggiemay1971 Aug 2022
Thank you! Yes I know it's too late for my mother to take advantage of VSED, but not for me. Unless someone experiences having a LO with LBD, they will not fully understand the psychosis (fear, delusions, hallucinations, paranoia and anxiety) that goes along with it. In researching I found that its not enough to add an addendum to your Living Will. It is suggested to make a video of oneself requesting VSED. We did make some strides yesterday - mom is completely off meds except for brain and pain and they upped her seroquel to an additional dose. I am so sorry for the loss of your brother and that he didn't go through the torment of LBD. Thank you again!
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Sad. So very sad. Hopefully some day we will evolve to the point where is will be legal to put a person like your mother out of her misery.
What a messed up world it is where every measure will be taken and no expense spared to keep an elderly vegetable with no life alive in a facility.
Yet some younger person who is poor or had lousy insurance will be refused treatment that can not only heal them, but restore them to a good quality of life.
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Maggiemay1971 Aug 2022
Thank you for your reply. So many posters seem to think I want to kill my mother. That couldn't be further from the truth. I want her to die with dignity in peace and not from an event where she is manic and could hurt herself or others. I agree with your wholeheartedly about the non-treatment of younger folks who need care but cannot get it due to insurance. We live in the upside down. God bless you and good luck with your LO.
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A point here VSED is by definition voluntary You can not initiate or institute it is has to be something that she does.
Placing her in a facility where she will be safe does not necessarily mean that she will be drugged up to the point she can not function. (It is possible that she may not be able to function due to the hallucinations, paranoia, delusions, fear...anyway)

For yourself.
You decide now what you want to do and what you want done.
Make sure your kids know what you want, why and while they may not like it they need to understand this is your decision now while you are mentally capable of making that decision
See a lawyer preferably an Elder Care Attorney and make sure all your legal ducks are in a row.
You appoint someone that will be able to carry out your wishes with no hesitation. If you are living in a state where medically assisted suicide is legal talk to your doctor. (If you do not live in a state where it is legal would you consider moving?..kinda kidding)

And I have to ask...why is mom on Palliative Care and not Hospice? I think there would be more benefit from Hospice. More care more options.
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Maggiemay, please note you get equal DNA percentages from both parents, thus 50-50. From your grandparents on both sides, you get 25% from each. And it breaks down even more for great-grandparents as there are 4 sets of great-grandparents.

Maggie, your early signs of dementia may be just exhaustion from caring for a parent who has dementia.
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