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Younger-Onset AD or Other Dementia
End of Life
Ok, so I’m going to put it out there. I’m going on a year with this diagnosis and have never had a more emotional time in my life. It has been rough, as many of you can attest to. I am trying my best to make the best of it and live my life to the fullest. Figuring out what I want is hard though, especially when the people in my life may not be on the same page. Anyway, I don’t want to get off topic-I’m trying to get my affairs in order and one thing is just weighing heavy on my soul and that is my end of life plans. I shouldn’t even be talking about this, I’m only 56. But none of us should be talking about this, should we? If you follow me.Anyway, I’ve really, seriously, been considering my “options” and one of them that I can’t dismiss, is the premise of choosing the right to die. I don’t claim to play God, nor do I consider it suicide, but I know how I don’t want this to end and I’m beginning to believe that I have a choice. I don’t want to be alive just because I can’t die. I don’t want to die, never before have I wanted to live more in my life. But I didn’t want this disease either.
Anyway, what are your thoughts for your life? Have you thought about this like I have?Anyone interested in sharing their “end of life “ plans? I know this is a very personal and delicate subject, and I hope I have not offended anyone by bringing it up.
Peace and love to all.
Thank you for posting this.
You say that choosing when and how you will die is not suicide. How do you define suicide? What is different between your brothers choice and yours? Their’s was , possibly, immediate and yours is in the future?
“… never before have I wanted to live more in my life. But I didn’t want this disease either.” None of us want the disease.
Those of us who live in a state or country where assisted suicide is legal have seen others choose that option. I don’t think, but don’t know, that it is an option for dementia.
That choice is not my option.
I think this section may be an opportunity for others to express their thoughts. Sometimes writing our ideas down helps either confirm or cast those ideas into doubt.
As each write their replies, please do respect others opinions.
All of us have a degree of control over our lives. A DNR is control. Refusing treatment is control. We can stop eating or drinking. Ending one's life is not exclusively "an action"
My husband's death has led me to think seriously about my own life and the end of it. I think about it almost every day. I have selected where I want to be placed should that come to pass. I have updated my living will and gone over it with those who will be in charge.
Conciously ending my own life with an action? I think about that too and it is a definite maybe.
Additionally working on burial/cremation., service or no and resting place.
I want my own choices and in doing the above my loved ones will not need to agonize over what I wanted nor will they need to argue between themselves.
Not a great topic but boy how important!
I told my adult kids several years ago that I would kill myself if I developed Alzheimer's and I reminded them again when I told them of my recent diagnosis. A friend recently told me that her grandmother said the same and yet Grandma is now housed in a facility. My reply was that, unlike her grandmother, I knew that I was at a higher risk for Alzheimer's years ago and had planned accordingly. Having the plan in place and the means to carry it out is half the battle.
I have been wondering where the line is for a couple years.
I was with my Dad as he died of Alzheimer's and a broken hip that became infected. We called Hospice and they were to ??? we thought they would be in attendance or more involved than they were. I never saw them in fact. They approved meds, not much more.
I spent the last 8 nights with him as he did no food no water. I learned we do not feel thirsty, we only know it because our mouth gets dry. After day 3 we were very relaxed. he could no longer speak so we communicated through facial expressions and a squeeze of my hand.
This is my alternative. It seems my local hospice will mostly help by being "on call" and covering for the 7 - 10 days to die at home this way which to me is letting nature take its course, not suicide. It may happen that I get another UTI infection and we just don't treat it. My mother died this past year from kidney failure and she was so tired, just slept and dozed for 3 days then passed in her sleep.
The loss of language does not equal the loss of thought, from what I have experienced. Pain is going to be a factor for me.
Having something to look forward to - even if there is little chance of it coming to pass - makes life worth it now.
Knowing how life is what happens while making other plans, I doubt I will have to be in charge of stating at the time "enough".
To me, stopping certain meds that I know are keeping me alive is not suicide. It's letting nature take its course. A case of omission rather than commission?
I will attempt to combine the 26 letters in front of me and make a few cryptic sounds in your language.
End of Life... By the force of Fate.
End of Life... Individual choice. Situational ethics. Courageous decision.
Because I do not know your personal history. And because I do not know your situation. And I do not know your religion. And I do not know your sociocultural norms. And I do not know your system of justice... To reply, it is very delicate.
As of this moment in Time, I do not live with a major neuro-cognitive disorder. I do not have a terminal progressive neuro-degenerative disease. My husband, may he rest in peace, did live with dementia/AD for 10+years.
From the moment of Birth, we have Death always sitting and waiting on the doorstep to knock on the door.
One fateful morning, my immortal beloved had a sudden heart attack at home. As required by law, I called 911. When the medical team arrived, I told them, "Do Not Resuscitate." It is my husband's will. I must respect his choice.
Thus, it was written. Thus, it must be done. Thus, it was done... Birth Certificate. Death Certificate... Final exit: Cardiac death... The force of fate at work + My beloved's choice at work, Do not Resuscitate.
My immortal beloved was a philosopher by profession. As a professor, he had spoken and written extensively about Life. Death. Being. Becoming. Peoples' Religions. Cultures. From ancient thoughts to post-modern thinking. I knew his mind before dementia/Alzheimer's. I knew his mind while living in the time of dementia. And, I knew his mind while dying of a heart attack nestled in my arms.
We were a community for 48 yrs. From the moment we met in university at the marvelous age of 20 full of hope until the moment he died full of wisdom at the age of 68, we nourished each other. We supported each other. We comforted each other.
We were from different cultures. We spoke different languages. We accepted our differences. We accepted our individual idiosyncrasies. We had to learn to communicate with each other. We would be part of each others history. It was our choice.
My life... I did not choose. It was given to me. A gift from the gods.
My existential courage to be... what, when, where, how, why, with whom... Daily courageous existential choices on how to sculpt my reality with every breath I take ... O choice, the choice to be, the choice to do. A gift to me from original Eve. Courageous Eve... Thank you, Eve. The taste of the fruit from the Tree of Knowledge, it is splendid.
Final exit... It would be my pleasure to lend a helping hand to Fate, at a time and place of my choosing.
Whatever the fates decide or whatever I choose... may it be done without despair, without fear, without doubt. May the final exit be done with courage and transcendence. Nothing to lose. Energy is being released to infinity.
Kisses and hugs, to all.
I too lost a brother to suicide. That alone is tough and has lasting effects. Your topic is a great discussion subject.
I decided when I was diagnoised with EOAD I did not want anything to prolong my life. So I chose no "best practices" to me it was a question of prolonging the inevitable?
So I still smoke, eat junk good and pretty much do as I please. I need to make sure my DNR OR NOW IT'S ADN ALLOW NATURAL DEATH HERE IN GA. IS STILL IN PLACE.
I want only pain meds. I like Alz+ worry about end of life pain. I say to each his or her oun.
TThanks fot broaching the subject.
Horse Lover- there the kicker! You have to be still "capable". When do you decide 'when'?
This disease sucks.
w/e- your writing is so beautiful to read- I am very sorry for your loss.
I am not a PWD (at least so far). I do have a Living Will. It seems to me being alive is not the same as living.
The way I look at it is I am not acting as God; I am preventing the medical society from acting as God with my body.
In answer to your previous question re actively committing suicide (immediate results) vs. letting nature take its course (long term.) I don't believe they are the same, but I understand there are similarities. Many of us have a DNR order on file. We don't want life support or a feeding tube. I have made a decision on when meds, other than for comfort, will be discontinued. Still sounds a distinction between active and letting nature reign.
I'm not arguing with you. Just attempting to put in writing where my thoughts are.
I was up all night peeing blood, ANOTHER UTI!
SO SHINGLES, recurrent uti's, can't see, can't hear, will be suffering from the these anti-whatever pills for weeks to come.
Since there is nothing I am looking forward except the outside chance I could hold my grandkids one more time...
called hospice nurse. this is brutal. I will write more later.
I do not consider letting nature takes its course to be suicide but it does make me want to speak to our Bishop asap. He rarely gets to town but that is going to be a major factor. His aunt died last year of ALZ and was in bed in a nursing home for 2 years.
distraught. great discussion. help me!
I was diagnosed in 2015 - I was in a Biogen study, so I know that it is AD. I am having more and more issues. End of life is on my mind a lot. We do not let our pets suffer, we should not make each other suffer either. Yes, I am Christian with a STRONG faith. I have discussed with my Pastor and have decided that, when time comes, I will take on last trip to Switzerland where added end of life is legal.
I would encourage anyone on this site, thinking of this, to look into the Swiss way of handling things. It will ensure that your loved ones left behind will not be attacked by our archaic legal system. Just google end of life and Switzerland.
Good topic. I don't want to be on display and kept alive on machines because my family can't let go. Don't want 100's of thousands of $$$ spent on keeping me alive when there is no hope which as some have already suggested is Dr's playing God. Religious beliefs are against suicide but also against judging anyone who chooses to take their own life. I am so sorry for your losses Obrien and Lisa!
Are your family members and loved ones uncomfortable talking about this subject with you? Mine are. Perhaps I should write them a letter about my last wishes and let them know I've done so?
If you leave a guideline for your family and assure that your medical provider has it, there is a clear path they can follow.