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I am looking to change the right to die laws in the US.
Michael Ellenbogen
Posted: Wednesday, May 25, 2016 8:25 PM
Joined: 11/30/2011
Posts: 4463


 I am seeking to find someone thinking of taking their life who is living with dementia in one of the states. Oregon, Washington, and Vermont, I have a legal team that will help in your case at no charge to you. With your help we will change the laws and open up the doors for other states to follow. I would have done it in my state PA but this is one of the hardest states to change according to my legal team.  Please feel free to reach out to me here on the site or on my website http://michaelellenbogenmovement.com/

It looks like I missed the state of California and Montana.


alz+
Posted: Saturday, June 4, 2016 5:05 PM
Joined: 9/12/2013
Posts: 3608


One of my friends with dementia had to travel recently to another state to be interviewed about end of life choices, to learn how to do it herself.

She has made it clear she wants to control the  ending of her life in her own way and at the time she wants.

I respect that and yet feel the dread of dementia to the point one prefers an "early" death a problem of uncertainty about help being available for us, being a burden, and endless suffering.

Another thing that comes up is "I want to die rather than have some one cleaning up my poop." Becoming helpless happens in almost any terminal  illness and yet many people say that is a reason to end their lives, to not be helpless.

The belief that staring into space, drooling, with bed sores is inevitable is such a grim bet.

I helped my dad die - he had an infection from a broken hip repair and am now foggy on how he went from that to Hospice. He was moved from the nursing home once the mrsa was discovered to a hospital and food and water were withheld.

I spent nights with him, low lights, thick foam pad on bed, kept him war, wet his lips, rubbed his back and hands. Laid by his side, drifting in and out of sleep together. It was incredibly peaceful and painless. Was that unmericful? should he have been slipped some drugs to avoid the dying process?

A high school friend of my Mom's had dementia and I visited her at nursing home. She had been there a week. We talked, she smiled, was sitting in wheel chair, very happy. She died in her sleep that night.

Could you suggest something for me to read about this? I want to be more supportive of my friend's choice while at same time letting people know dementia is not usually so awful a way to die they need to check out asap.

I think because I have been left for dead twice in my life and know the chemicals released make it seem like being in a painless dream state I am not worried about it as much as other people.

 Thank you Michael.


alz+
Posted: Saturday, June 4, 2016 5:16 PM
Joined: 9/12/2013
Posts: 3608


Found through Michael's link above

http://www.blogtalkradio.com/alzheimersspeaks/2013/10/29/life-or-death-with-dementia--the-taboo-conversation


http://www.becausehopematters.com/blog/dying-on-my-own-terms-giving-young-onset-alzheimers-a-voice/


a_step@a_time
Posted: Sunday, June 5, 2016 11:37 PM
Joined: 11/21/2015
Posts: 237


Alz+, I see both sides and feel the *option* for assistive death should be available.  It would be nice to have full paid counseling sessions under insurance to help people with terminal illness cope with end of life acceptance under either situation.
alz+
Posted: Monday, June 6, 2016 11:11 AM
Joined: 9/12/2013
Posts: 3608


agree that having this in place for those who suffer from fear of the hellish end is a compassionate thing.

at same time, I choose to be putting my efforts into changing the mindset about how this illness plays out that makes people seek suicide to avoid the hell they believe it is.

The intense worry of so many patients centers on "becoming a burden" or wasting money on a pointless life". Do people have this same sense of a "better to suicide" when someone has ALS? paralyzed people? Late stage MS? Children with seizures? Veterans with mangled bodies and minds?

Also I have suffered from severe depression and been suicidal with ptsd, some one helped me get back on my feet and live and I am thankful for it. Iris saved my life on

these boards after I was first diagnosed and my husband did not know how to help me. Her firm kindness and methodical way of finding life worthwhile has given me time to experience some of the happiest days of my life. And from afar and online!

So to be clear, I would not judge anyone's choice to end their own life for their own reasons, but my concern is those "reasons" then leak into sub quality care being given to all people who are helpless at any stage of their lives. Believe me, I have been in the care of people who really left me to die.

 I work to reduce the perception (self fulfilling) that Alz makes us irrelevant drains of resources better spent on those who do not have  the illness or to stop fixating on the future of economic disaster for the country because we live with ALZ too long.

My tone is pissy today because I am having to deal with my "family" working to make me irrelevant and deny me trust information I am legally entitled to. Having to fight NOW to not be cut off from what my Father meant to leave his children equally? This thinking is a worse sickness than anything I have.

Being clear - I hope Michael gets the laws changed to what he thinks is best. My work, such as it is, is to make life important and worth it for us PWD and our caregivers by opening the discussion to question the horrific nightmare scenarios that cause traumatic worry to patients...


PattyPollard
Posted: Tuesday, June 7, 2016 2:07 PM
Joined: 4/6/2016
Posts: 2


My husband has expressed his desire to end his life on his own terms, before he gets so bad he can't.

I am sure he isn't the only ALZ patient who has thought this.

Scares me as much as the ALZ does.

p

 


feudman
Posted: Tuesday, June 7, 2016 8:39 PM
Joined: 6/5/2014
Posts: 1591


A lofty endeavor, Michael, but I believe you will have your work cut out for you. In addition to religious groups and "sanctity of life" supporters, the medical community will push back hard against any such legislation. My state's Medical Society, in a statement that aligns with the AMA's, "strongly opposes any bill to legalize physician-assisted suicide or euthenasia, as these practices are fundamentally inconsistent with the physician's role as healer." 

I don't even know where the Alz Assn stands on this issue, but a variety of social agencies oppose it. There are problems applying the current Oregon model to the elderly and those with dementia. Dr. Joanne Lynn, director of the Altarum Institutes Center for Elder Care and Advanced Illness states "most ederly patients face progressive degrees of disability before dying, and are never offered a clear-cut diagnosis indicating how long they have to live." 

Consider these two scenarios: such an option could endanger vulnerable folks who may feel pressured with a duty to die rather than become dependent on (and a burden to) others. And since this would offer a much cheaper alternative to an indeterminate course of end-of-life treatment, pressure to "check out early" may come from shamelessly greedy heirs. I've read enough shocking threads here to know that is a realistic concern.


llee08032
Posted: Tuesday, June 7, 2016 10:08 PM
Joined: 5/20/2014
Posts: 4408


Alz+ I get what you are saying. I respect autonomy and others right to choose but at the same time saddened about the hopelessness and despair always being shoved in our faces.

Janet Adkins who had AD was Dr Kevorkian's first patient to be assisted to her death. She was 54 years old and in the early stages when she chose to end her life. 

It seems as though we also need to change the right to "live" laws considering that many have given up on the idea that the person  still exist inside a PWD. 


llee08032
Posted: Wednesday, June 8, 2016 7:19 AM
Joined: 5/20/2014
Posts: 4408


Michael,

I just wanted to add that I respect what you are trying to do and all your advocation for PWD.


The_Sun_Still_Rises
Posted: Saturday, June 18, 2016 10:38 AM
Joined: 7/24/2015
Posts: 3020


Anyone considering this as an option, should look up Final Exit Network.
alz+
Posted: Saturday, June 18, 2016 1:20 PM
Joined: 9/12/2013
Posts: 3608


To not want this myself does not equal that I judge other people choosing this option.


more info:

http://www.pbs.org/wgbh/frontline/article/the-evolution-of-americas-right-to-die-movement/

http://www.pbs.org/wgbh/frontline/article/the-shadow-side-of-assisted-suicide/

****

Michael's work on this has made think, and for that I am grateful. I would like my wishes to not pursue this option to be as acceptable and not think of this as in any way trying to deprive others of their choices.

Sometimes I see the expression "sanctity of life" like that, in quotes, and get the impression having spiritual practices for end of life being sort of bone head idea. 

A young person depending on even younger people to care for them, lack of financial resources, lack of any other place to go and live out a life are all very real deeply human problems.

I hold no judgment towards those who seek this aid. In my research I found about 60% of people who make these arrangements actually use them. For while they were alive, having this option made life bearable while nature was making other plans.

love and courage to all of us


His Daughter
Posted: Monday, June 27, 2016 4:41 PM
Joined: 6/25/2014
Posts: 2270


Michael,

Not sure this would help, but I just spoke with a man who's wife did take her own life because of this disease.  She, obviously, isn't here to talk with you, but her husband is still living in Iowa. 

PS Sorry I missed the states you were looking for.  But it certainly shows that it is happening all across this country.  I agree, let's make it legal and comfortable for all.

 

 


Michael Ellenbogen
Posted: Monday, June 27, 2016 7:24 PM
Joined: 11/30/2011
Posts: 4463


 Thanks but I have a husband whose wife took her life at 50. We just had our meeting with the lawyers today. They were brainstorming and there are a few paths they can take. Should know in a few months which direction this will go. The plantif may end up being a doctor or a AL. They may be coming from a whole different angle.

 


The_Sun_Still_Rises
Posted: Tuesday, June 28, 2016 7:07 AM
Joined: 7/24/2015
Posts: 3020


Alz+,

I think it is equal no choosing this as it is choosing it.  For me, it is like going grocery store...there are infinite possibilities what choose bring home an eat.  Each of us will make different selections at the store (an for very differing reasons).  While, of course, we are all MOST comfortable with our own decisions an our OWN reasoning...I don't see it is of any concern others WHAT food we get at the store or why. 

I think peop, like me, share our thinking an reasoning. for sole purpose that it is a subject worthy of coming up the light. 

Where I have a hard time, is when others choose do a thing called "judging others."

An, for what it is worth, I am an extremely spiritual person myself...so I think being spiritual can go both ways.  Granted, some subscribe religion which dictates for them what what.  I was, thankfully, raised Lutheran...but many other subset Christians (like Baptists or Prespiterians (in particular) have differing an competing views on end of life.  Normally, I would no think that the Prespiterians an Lutherans were much different - but there are on radically different sides of coin re end of life.  

SO...that just begs question of WHICH human (who crafted those religions begin with) was ultimately right?  While avoiding questioning the religions per se, I answer that with - "no human holds open the gates of heaven"...we can, at best, guess at what it takes get in there...an do the best we can get there...an hope we were right. 

I don't think there is ONE answer.  There is only a complex problem, each with unique peop...with their own unique thoughts, feelings, fears, beliefs...an their own resources.

I firmly believe that we are each doing the very best we can. 

For me, my choices end my life are no in completion my spiritual beliefs.

I think the dilemma is this...how well is anyone able keep their beliefs just themselves, verses how much do peop feel a need blanket others in their beliefs???  Does that make sense??? 

One person may feel it all wrong for them, make a choice like this...which is FINE, an perfectly understandable.  Other peop, feel it is a right choice them.  I draw the line at when others try say that because it wrong for them - that it has be wrong for others. 

An consider this...what if we were at the grocery store discussing instead whether we should buy an eat doughnuts???  How would that change the conversation????  Some are very against eating doughnuts...some love them.  Should those who love them force the gluten intolerant eat them??? 

It is also like abortion.  No everyone would choose such a thing...but it is very nice it available for those who do need it, an choose take the risks an consequences. 

Hope that helps.  <3 

Much Love