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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Monday, April 15, 2013

Why Not Suicide?

Washington DC
I’ve been surprised that the question of suicide has come up only once in this blog’s comments, even after the two recent posts on fear (here and here).  As I write there, I think that for me life will retain too much meaning to want to leave it early.  But given the attitude of most people towards Alzheimer’s, why don’t more choose suicide?

Certainly many think about it.  On seeing an Alzheimer’s patient (or any other person) lying terminally ill and comatose in a nursing home bed, almost everyone thinks, “I don’t want to die like that!”  Others will feel the same when a person can’t remember family or wanders babbling.  But when they gets to that point, they rarely suicide.  Why not? 

For some, of course, the first and overriding issue is that suicide is morally wrong and can’t be considered. 

Second, while people might want to commit suicide “before I get that bad,” very few people will choose suicide while their lives still retain meaning.  Some people might choose to kill themselves while they’re suffering greatly, but the prospect of future suffering is not enough of a motive.  If life is worth living now, we hang on to it.  We are, after all, attached to life.

Third, many people with Alzheimer’s lose their ability to suicide before they’re ready to go through with it.  The novel Still Alice depicts an intellectual college professor with early-onset Alzheimer’s who decides she’ll suicide when it gets “too bad.”  She places into the medicine chest a bottle of pills strong enough to kill her and writes herself a note with exact instructions on when and how to use the pills.  As she gradually declines, she gradually loses the capacity to remember or figure out what she meant.  Ultimately, she wonders who this person is who is trying to kill her by writing this note to her.

Fourth, the experience of the person with Alzheimer’s may not be as bad as we—who are looking in from the outside—think it would be.  When we get there, we may find no reason to suicide.  As unimpaired people or as people earlier in the disease, we project how we will feel in the future but, in fact, we have little idea what our experience will be then.  In the Comments section of this blog and in emails to me, I’ve read beautiful stories about the happiness of patients with very advanced disease.  Maybe most of them aren’t suffering much at all.

Finally, one values life differently as one gets sicker.  I worked for many years in a home and hospice for homeless men with AIDS.  Most of them were admitted when their symptoms were relatively mild; they’d see other patients about to die and vow to overdose before they got “that bad.”  As far as I know, none ever did or even tried to.  As we approach the end, to have a “meaningful life” requires less and less.

Human beings generally value their lives deeply.  We may think that when we reach such-and-such a condition, our lives will lose that value.  But, apparently, that’s very seldom true.  My understanding is that the suicide rate for people with Alzheimer’s is low.  I’m not surprised.

For my own part, I think I’ll be just too curious about what the future holds to consider walking out.

42 comments:

  1. Anonymous4/16/2013

    Very insightful, but one aspect you do not mention is that there is no legal way to commit suicide. You cannot discuss it with your doctor or prearrange assistance from a loved one. I want to be able to get a prescription from my doctor for the meds to humanely kill me, and make sure both my doctor and my wife understand the circumstances that I wish those meds to be used if I am unable to take them myself.

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    1. I'm no expert in this at all, but I'm quite sure that euthanasia ("mercy-killing") is still considered murder. If you are not AT THE TIME OF THE SUICIDE mentally competent to decide to terminate and physically able to swallow the pills or pull the switch or whatever, then no one can do it for you. In places where suicide is legal, other people can help you but only if you're mentally competent and physically able to take the last step.

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  2. Perhaps a DNR (with guts); otherwise most folks love a mystery and who knows what the enteric and cardiac brains might have in store after the cephalic takes leave? You only live once (literally, sorry after-lifers). A human being with gusto and curiosity ALWAYS stays to the end. Enjoy the moment. It'll be fine.

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    1. Thanks, Edward. I feel the same way.
      Just a doctorly note: The usual DNR (Do Not Resuscitate) only gives the medical people permission to stop treating when a patient's medical situation and quality of life is terrible. It is possible to make a "living will" and/or delegate another person with a "medical power of attorney" in which doctors MAY not continue to treat under whatever circumstances the patient decides. (This needs to be done very carefully, however, or some doctors will try to get around it.) But none of this allows the patient to actively kill himself or have another person do it. A DNR only says: "No further treatment."

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  3. What an incredibly insightful post. I also might add that for some, as Alzheimer's progresses they are less and less aware of their loss of cognitive abilities. My grandmother was most bothered by her memory difficulties when most of her mind was intact. She'd complain about getting "mixed up." Towards the end, being "mixed up" was a normal state for her. It was a blessing that during this time her mental condition didn't bother her. Only at the very, very end, was her memory loss disturbing to her, when she would be in one point in her life at one moment and then would mentally have moved 20 years into the past just a few minutes later. This was days away from the end, at which point she no longer had the ability to commit suicide, even if she had ever wanted to.

    Brilliant post. Thank you for your courage.

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  4. Thank you for sharing these points, David. I would add that we learn something every day from someone, like you, with Alzheimer's or dementia. That can enhance our lives by the sharing you do with others. Blessings!

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  5. My parents were members of the hemlock society and had all of the necessary items to commit suicide when the time came. But just like Alice, they waited too long. My dad was at home with hospice dying of emphysema and he began pestering my mother to fetch the drugs from the closet. She had moderate AD at this point and could not really help him. As soon as hospice realized what was going on my dad was dying in a nursing home. By the way I believe that one of Dr Kevorkian's first clients was a woman with early Alzheimers. I have too much curiosity to hasten my demise.

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    1. Thanks for your story, jmojo. We probably learn much more from stories than from didactic teaching.

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  6. David, I think you are very right in saying that we have no idea of what the experience is for the individual at the end stages of the disease. We can only look at it through our own filters and opinions (often flawed). In the same situation I would like to think that as long as I were feeling loved/cared for, I would prefer to have the experience of life - whatever that might be with Alzheimer's (and I wished we lived in a world where a patient and their family could make their own choices no matter what they were).
    Another insightful post. Thank you.

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    1. Thank you for your comment. One way of stating the purpose of this blog is to clear away some of the most harmful filters and opinions to allow us to be more open to what the reality is for the person with Alzheimer's. Unfortunately, not everyone is loved or cared for. I would think that that experience could be awful.
      But, again, that's what it looks to me now.

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  7. Hello again Dr Hilfiker,

    In regards to suicide, I think again of my mother's experiences. I cannot count the number of people whose lives have been enriched by meeting her in the years since her illness - and that is in addition to the people she knew when she was well.

    The lights may be dimming here - but they are not going out on your soul. That is true of my mother. I am certain that when all of us leave this world we will know why we lived and died as we did. And there will be no brain difficulties getting in the way.

    I am glad you are not thinking of suicide. You are already touching many, many people through this and all of it is good.

    Tim

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    1. No, I've been at some points in my life very depressed, but suicide never even came up as an option for me. I can't take particular credit (or blame, I suppose) for that, but life has simply seemed too interesting.

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  8. Hi David - I have just found you and intend to follow with tenacity -
    In her recent book "Keeper: One House, Three Generations, and a Journey into Alzheimer's" British author Andrea Gillies makes the point that a potential suicide must have a sense of self - and that is something that slips away as Alzheimer's Disease progresses.
    In my solo theatre work on the day in life of a caregiver and his dementia patient the caregiver notes " ... in contrast to her wish to have someone “end it all” for her when she had her faculties, as those faculties diminish, her tenacious will to live increases in equal measure."

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    1. Fascinating! Given the conversation here, I suppose I'm not surprised, but it's a intimate look at how it might happen. Thanks for your comment.

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  9. If we indeed "go backwards" in our cognition, then being the two year old child in our minds wouldn't be any worse than being a two year old 70 years ago. There is wonder in everything around us. And someone with the cognition of a two year old would enjoy things just as much as anyone. Sure, its hard on the people around us, but its not hard on us. At least with a two year old, there is joy in watching the child grow and mature. Its heartbreaking to see that child going down and down. But for that child, it is merely the day, and there are things to see and do. Watching a 3 year old picking a tomato is no different in awesomeness than watching an 83 year old pick a tomato with the same amazement. Someone with AD is just going the wrong way on the highway of life. But for them, its still the same highway. They experience love, caring, amazement, seeing wonderful things, happiness, just as anyone does.
    One time I was in the bathroom with a very confused woman, who usually trusted us to know what to do next. She had to be told to sit on the toilet, I cleaned her up, got her a clean Depends, we washed her hands, I gave her a hug. As we opened the bathroom door, her daughter was sitting there waiting, and had heard our conversation in the bathroom. And she gave me a hug and thanked me for treating her Mother as a grown up, answering her questions without impatience, etc. Even people with AD are still living loving humans. We may think that if we were in their situation, a black capsule of cyanide would end the problem. But as that person with cognitive difficulties, do they really think it is a problem? Or is it just life? They may have too much stimulation around them, they may feel they are being treated as children, they may feel alone. But other than that, why should we assume that its miserable? I see AD patients having an upsetting experience, but with the love of caregivers, that same patient acts and feels like a normal person. just a "bit" forgetful.

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    1. And as for an AD patient feeling alone, wanting comfort, and saying, "Nobody comes to visit me." (forgetting her daughter visiting every afternoon), its wonderful to see them perk up and be happy when reminded of it. If I say lightheartedly, "Diane came this afternoon. Do you remember (no , she probably doesn't)???? Because Diane brought you the piece of pie. And here it is right next to your plate." They again feel loved and wanted and not alone. Its all in how people treat them.

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    2. I've been saying throughout these posts that we don't really know what the person with severe Alzheimer's is thinking or feeling. But there are so many accounts, like yours Le An, that all tell the same stories. If even very demented people are not abandoned to made to feel outcast, if the receive love and attention, if they are included rather than abandoned they appear to their caregivers to be content with their place in life. So maybe we do know something of the inner state of those who have been well-loved and cared-for.
      It is harder for the caregiver to be sure, but at least with some very advanced Alzheimer's disease there is the possibility for great joy, too.

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    3. Everyone deserves to be treated with dignity and respect. That makes all the difference. This blog is giving me such hope!!
      One time visiting my mom in the nursing home, I got turned around as I was leaving and came around a corner and she saw me again. She lit right up and was overjoyed that I had come to visit her. Every moment for a person like this can be filled with surprises and joy. Jesus says we must be like little children to see and enter the kingdom.

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    4. Thanks, jomojo:
      What a lovely story! Thank you for sharing it. Dignity and respect. Yes. It does make all the difference.
      David

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    5. Anonymous5/18/2013

      "There is wonder in everything around us. And someone with the cognition of a two year old would enjoy things just as much as anyone."

      I don't think so.

      Alzheimer's patients are not infants. And there is no "wonder" in lying in one's own waste, unable to talk, to think, and even to know who you are. It is nothing but a living death. Assisted suicide for this kind of dehumanizing illness should be available to everyone, if they desire it.

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    6. Anonymous7/18/2014

      My father shot himself in the head July 12, 2014. He was suffering from alzheimers and was not able to do the things he used to could. he would get very upset and very angry at times. he had always told us he would never go to a nursing home and he didn't we are I shock but maybe it was a blessing in disguise he was terrified at times of what was yet to come.

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    7. My heart goes out to you. As much as we may "understand" a person's desire to commit suicide, it is often a shocking and painful experience when it actually happens and you are left alone.

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  10. jmojo, that's a cute story about coming around the corner and your Mom perking up. Isn't that just the way it is?
    Obviously not everyone has a wonderful experience every day. I have cared for a few Jewish people with tattooed numbers on their arm. And some of these actually live in the past, fearful and afraid. But I suspect they have lived in that fear most of their lives.

    So I think that how you live, is how you will go down that road of AD. I'm a really laid back type B person. I seldom get frazzled. And I hope that I will remain that way into old age.

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    1. One of the things I'm curious about is how much of the bad experience that some Alzheimer's patients have (although I've heard of almost none since beginning this blog) is a continuation of their experience before Alzheimer's. Is it the Alzheimer's that creates such terrible situations or the fear and depression with which people come to their disease. We have only anecdotal evidence about that (and, as a doctor, I don't trust anecdotal evidence), but it would sure be interesting for some researcher to take a look at that question. If we come in laid back and peaceful is that what happens for us as we sink into Alzheimer's.
      (If so, that might not be such good news for me as I've never been known as laid back. It's been Type A all the way.)

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  11. Dr. Hilfiker, I am finding your blog incredibly thought-provoking. Thank you for keeping this public journal! I have an editorial question: Why do you employ "suicide" as a verb, as opposed to the more common phrase "commit suicide"? (I think I know the answer, but I'm interested in hearing your reasoning.) I apologize if you've already addressed this. Thanks.

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    1. Allison:
      Actually, I have no ideological or PC reason for using the term suicide as a verb. Somehow as a writer, I like the active, specific verb rather the object of a vague verb. If you have some specific reasoning why I should or shouldn't, I'd be interested.

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  12. No, I have no reason why you shouldn't. My guess was that to say "commit suicide" implies judgement that it's a bad thing, like committing a crime. I like your use of it as a verb. (I used to know a person who used the phrase "committed sex"--I think it had to do with her extremely restrictive religion but I'm not sure. I always thought that was funny.)

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    1. I hadn't thought of the "committing suicide"
      / "committing a crime" parallel, but I think it works. Thanks.

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  13. Based on the trajectory of my mother's and grandmother's AD progression, and after loving consultation with family and friends. I "reserve the right" to end my life at a time and with a method of my choosing. I have no moral or spiritual issues with suicide, though I prefer to use the phrase 'end my life on my terms' as suicide implies despair.

    Of course, such talk is somewhat arrogant. I don't really know how I will die; it's just that I am lucky enough (yes, I consider myself fortunate) to know in advance of my fatal illness.

    Much depends on how my cognitive test results go over the next 2-4 years. I have been approved to take part in the Phase III trials for LMTX (goes after Tau protein http://morallowground.com/2012/10/30/taurx-lmtx-alzheimers-wonder-drug-enters-phase-iii-trials). I'll be on placebo or LMTX for 18 months, followed by 12 months of LMTX. If that trial is successful, well -- YAY!!!

    Yes, I am attached to life, but not to the extent that my attachment blinds me to the reality of this disease as it manifested with my mother and grandmother.

    MY future suffering or finding value or meaning in life is not what concerns me; I just refuse to spend the last 12-15 years of it with a vapid expression on my face, responding only to 'food' stimuli, staring blankly at loved ones. And frankly, I want what $$$ I have left to go to a grandchild's education, not to a nursing home.

    While I may not be in pain or confusion in those later years, I know my family/friends will be. I am not talking about the mid-stages of this illness (still have ability to talk/dance/sometimes recognize) -- I'm talking about the later stages (speech greatly impaired, unable to recognize, minimal response to stimuli). My own personal sense of integrity does not allow me let it get that far by a long shot.

    I have discussed this with family and they understand: I am not making this choice to avoid 'being a burden'. I am making this choice because of my own sense of integrity, of how I want to be remembered, of what I want my last interactions with this world to be. May family shared the last 12 years of my mother's AD -- and they understand and agree that I do not want to share those last years of my life with them.

    As to my ability to decide 'when', well "just the facts, ma'am": I know the markers on the various cognitive tests. When I hit those markers (prior to the mid-stage), out I go. The novel 'Still Alice' was great -- but it is fiction. I will not rely on self-assessment.

    Again -- this 'plan' may never happen if the LMTX trial works OR of I leave this life some other way. For example, if I were to be diagnosed with cancer, I would not seek surgery or chemo, nor would I end my life as a result of that diagnosis (my own pain is NOT a sufficient reason.)

    I have had, and so far continue to have, a magnificently joyful, painful, meaningful, boring, utterly fascinating and completely unremarkable life. Quite simply, I've decided Dr. Alzheimer's will not determine how or when it ends.

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    1. Well said, Megan. As you wrote, we never know what we will do until we get there. Nevertheless, you make a passionate, rational, moral, and aesthetic defense of ending your own life. We will each find our own way.
      Thanks for contributing to the conversation.
      David

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    2. Anonymous9/07/2013

      I relate to Megan's comments. The OP makes Alzheimers sound like a life adventure. Really? While some are sweet and dotty, this is not a truthful general picture of this cruel disease. I have seen the pain and exhaustion of family/loved ones associated with an alzheimer's patient. Not all are quiet and peacefully "laying there" as someone else suggested. Alzheimer's patients can be incredibly aggressive and violent with caregivers, biting, spitting, hitting, yelling, punching, swinging canes, throwing (or eating) feces... I see them asking for people they loved in the past who have died. Who the hell wants to not even know their child has died? Then the Nursing home takes all the money that person would have wanted to benefit their family.
      Presenting only a rosy, reassuring portrait is not truth. While we care for these patients with kindness, understanding and commitment, please do not try to make Alzheimers sound like it is not a brutal road to travel. We are none of us islands, we are part of families and most of us care tremendously (while we have capacity) about not putting our families through pain.

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    3. Thank you very much for your comment. As I've tried to write often, I am very early in this disease and have had very little contact with people with Alzheimer's who are further along than I am. I depend on people like yourself to provide a fuller picture in comments and emails.
      It is very clear from the comments and emails that I get (and should be obvious, anyway) that caregivers are the ones who suffer the worst consequences of the often brutal disease. Many who write me do tell of beautiful experiences with their loved one dying with Alzheimer's, but I suspect this is a selected audience.
      So I am grateful for your comment. It's important not to lose the full picture.

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    4. Anonymous9/09/2013

      Then God Bless you on your journey, may it be one of peace. Should it come to it, there will be those, your younger collegues and nurses like myself, who will lovingly see you and your family through what trials may (not necessarily will) come. Perhaps it is I am the "selected audience", perhaps it is my view that is slanted as I have cared for those who have most need of hospital level care. You sound like a good man, you are likely surrounded by those who love and respect you. Just as you would be there for them,so I do not doubt they will be there for you. I have seen it so often.
      I am truly sorry if I caused you any anguish.

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    5. Thank you for your consideration but (while, if I'm really honest, I never like critique) I had no anguish. I really meant it when I said I was grateful for your comment. The blog does need balance and you helped provide some of it.

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    6. Anonymous9/09/2013

      This is a p.s for you Dr Hilfiker, NOT for publication unless you choose to show it.
      I want you to know I was lashing out at Alzheimer's, not those who have the diagnosis, after a challenging shift. I should not have. It pains me to think I may have inadvertently struck at someone who deserves humanity's most profound gratitude and respect (your bio). No matter what course this illnes takes in your life, who you are will always be and will not fail. That self, that consciousness I believe will endure intact to the other side and one day you and all those you love will be together again. I am a woman of faith, I will be praying for you and your family. God bless you!

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    7. HI Megan-

      I am really curious about something you wrote about 'end my life on my terms' and family. "I have discussed this with family and they understand: I am not making this choice to avoid 'being a burden'. I am making this choice because of my own sense of integrity, of how I want to be remembered, of what I want my last interactions with this world to be."

      Was there no backlash from anyone in the family who thought you were crazy and needed to be watched? I totally agree with your wishes, but am wondering if I should tell anyone or just keep my own secret.

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  14. Anonymous4/26/2013

    Megan - you are extremely articulate and thoughtful. Thank you for your contribution. I would be interested in knowing, if I may, how you and your family handled your mother's Alzheimer's progression. This is a disease which, it seems to me, affects the inner circle of the 'patient' (the Marjas of the world) as much as it does the patient himself/herself.

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  15. I've had a great deal of personal exposure to both mental illness and AD, and I'm in total agreement with Megan. The well being of our caretakers is part of this equation also. I want my friends and family to enjoy their own lives, not spend time watching my decline in a noble effort to 'do the right thing'. The effect on caretakers can be devastating, and it's a guarantee that the stages of grieving will be experienced before the AD patient dies. We have a peculiar attitude in this country that death should be thwarted at any cost, but I think the emotional and financial cost of late stage dementia decline and care is too high, for any but the very well-off, to valorize.

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  16. Anonymous6/29/2013

    Just now reading your post. Granted that Still Alice is fiction, but it seems very true to life to me. The professor had her own view about what she thought would be the best life trajectory for her, and she was unable to carry it out because she waited too long. This is not an argument against suicide. This is a cautionary tail that, in the absence of a trusted, competent helper, it is necessary to act sooner, rather than later if you do not want to be helpless and taken care of in your last years. I believe the earth has more than enough people and this practice of prolonging every life to the final ultimate point is consuming way too many of the planet's precious resources.

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  17. Anonymous11/30/2013

    I've been playing catch up for some time on your posts. As I type this I already know from the notes on the main page that your diagnosis has been changed from Alzheimer's to something less. But, unlike many of the other posters (though of course not all) I would (and will, if it comes to that) have no problems committing suicide should I receive the diagnosis my father got. Why? Primarily because I do not want to put my loved ones through the grief and mental trauma that I've saw my mother go through, and to a lesser extent, my siblings. Mom ended up being the primary care giver for Dad until probably past the time where he should have been placed in assisted living/nursing care. It is probably a blessing in disguise that Mom passed away in the last year; she never could come to grips with how Dad changed to where he does not recognize anyone and is now dependent on everyone for everything. I have no wish to put my loved ones through that.

    I apologize for posting Anonymously, but I am not at all interested in the ease with which it is on the internet to find people and perhaps "do something about me" against my wishes.

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  18. Susan Hart2/24/2014

    I am NOT curious about what the end of Alzheimer's is like! I don't WANT to "experience" that! Are you people crazy? To have my life's memories stolen and ripped away from me would be like erasing the fact and meaning of my ever having been born. To put my loved ones through the
    hideous and anguish filled process of forgetting who they even are! The ones I've loved and cherished! No, I won't do that. Not to them and not to myself.

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