Gidget P on the Caregiver board responded to a query about assisted suicide.  I realize many newly diagnosed patients or suspicious patients immediately think, "If I have AD or other dementia, I'm going to kill myself before I get too bad."  That was a theme of the book "Still Alice".   

Well, it won't be happening.  Gidget P explains why in her post.  Here is a link to that post.  Basically the patient must be of sound mind in order to request  assisted suicide.  That may apply ot ALS or cancer patients, but not to dementia patients. 

http://www.alzconnected.org/discussion.aspx?tid=2147485259&g=posts&t=2147485253   

(scroll down.) 

Iris L. 

I have to admit that I have said for years ( long before my Dx of EOAD) after watching my mother and four of her siblings die from alzheimers. That I will not die from this disease. I am hoping that if somthing else doesn't kill me before I loose my ability to do it my self that I will take my own life. The way I see is that we are robed  of our person pretty early on in the disease. Before you know it we are someone else.

Being in the shoes of loosing family from this disease along with  having been the director of nursing in a skilled nursing facility I have seen the tremendouse pain it has caused the family member of these pt's. To me there is nothing worse than seeing a loved one die this way.I was also a hospice nurse fore 5 years so my decision is based on lots of experience/education and the one thing I don't want is for my family to have this experience. I have made the decision that I no longer want to be treated for anything but behavior and pain. That means no more coloscopys, mamagrams or anything like that. I will treat my EOAD but thats it. I have filled out my 5 wishes and my Dr and family have a copy so were all on the same page. I know this is a very controversial subject but they're just my own feelings. please respect that.

Michelle,

You and I are on the same page and I to ask people to respect it

OK. I've been diagnosed with Alzheimer's for over five years. I am 83 years old, well past my normal expected life span. My dementia and other neurological disease are stable. My high cholesterol is under control.

I do get UTI's. Are you saying that next time, if you were in my shoes, you would not treat it?

I respect your decision. However ....

I still drive, within reason, can still fly alone. I still live by myself. I just published a book and have others in the pipe line.

Sorry, I have a lot of life left in me. 

I do agree with your thinking, but not until the very end. Not until my body is saying, let me go. 

Michelle, did you read gidget p's post?  What do you think of what she wrote?

Iris L.

Iris,

Let me first  say I have read all of your post since Isigned on and I think you are remarkable!!! To answer your questions. Yes I would treat a UTI or any simple infection for that matter it would be very painful not to. I am more talking about anual diagnostic testing for which if somthing was found I would not treat. I would love to live a long and healthy life however I DO NOT want to die from alzheimers. Even though I am very healthy at the moment I have made myself a DNR. I firmly believe that medicine has gone a bit too far with keeping poeple going far beyound their time. So I hope I will go when it's God will to take me, if not I'll have to do something for myself.  I just know that  medications, hospitals or machines are not going keeping me going beyond my time. I believe you are in your eightys and that is woundeful you don't need to apoligize for having a lot of life in you. That is a gift for you to honer every day. God Bless!

As far as what Gidget wrote I believe she is entitled to whatever she feels about the subject I very much respect how she feels. I just don't happen to feel the same way. That's is what makes our Country so great we can speak our own minds and share our beliefs openly. Thanks Iris for all your wonderful knowledge that you share on this board!

From my understanding the point of gidget's post was that by the time an AD/dementia patient gets to the point of being "far enough gone" to decide THIS is the time to make her move, the existing laws that permit assisted suicide will not be applicable because the patient will be not of sound mind.    So those who are thinking along these lines will have to make other arrangements.   

I'm not questioning anyone's beliefs.  I was raising the issue that what one thinks one wants to do in the future may not be possible within the existing laws. 

Iris L. 

Iris---I didn't have the opportunity to read Gidget's thread...but...was disappointed when I realized the existence of the sound mind clause.ruled out assisted suicide for someone with A/D even if request by a person assigned as a health care power of attorney. 

 An advance directive should have priority.   In my opinion that rule is cruel on top of being against my final wishes.
 

You can't dye from AD, just complications caused by late stages of AD. So I believe that a person who has EOAD or AD is more likely to have other medical problems that will be the cause of death. While I do have it in my health POA, I never want to assisted suicide to end my life, I say anything that gives you longer life is good. I never want to be on a life support machines. Thats not life. In a way that is asking to end life. and can be done in a health POA.

Cherie, this is my personal opinion, but I believe the laws were written so that developmentally delayed adults and the severely mentally ill would not be "influenced" into giving up their lives, when they could not fully understand the meaning of what they might be giving permission for.   

Iris L. 

Here is a good link on how to write a health POA. What can be in it ect.

http://www.wvlegalservices.org/medpoa.pdf 

Michelle,

I'm new to this site and it has already helped me so much.  My mom has AD.  I've watched her mother and 2 sisters die a horrible death from this disease. I so agree with you about having a choice to end your life if you have AD.  I was disappointed to read about the Assisted Suicide laws in Oregon and Washington.  Why should cancer patients be able to end their misery but those with dementia cannot?!  We all put dogs out of their misery when they are ready to die, but we can't do this for humans? Most everyone disagrees with me, so it's good to know there are others who feel like I do. Good luck in your journey.. 

I have heard this subject, more suicide than assisted suicide, come up many times over the time I have been diagnosed. I have heard it discussed more by people diagnosed with FTD than AD and have heard some say they have a plan but I think that thought just gives them some comfort that far off in the future when it becomes intolerable they are going to end their life. Well the reality is that usually at that point you are not still capable of making that decision or carrying it out. It is totally against all of my beliefs and morals to even consider so I have never seriously considered it. While the pain of imagining the future, having watched my father go through it, is almost unbearable, I still believe that for some reason this is my path that I must travel it and not dwell on the future. Live in the day is the only way to go with this disease and actually in general for all people because life never has had any guarantees what tomorrow will bring or whether you will still be part of this world or another one.

I should say though that my wishes will be the same as the decisions we made about my father. When there was basically zero quality of life left, he didn't know anyone, didn't talk, wasn't eating or even getting out of bed most of the time we did withhold all medications, especially antibiotics because at that point things like pneumonia are a good thing to put an end to the suffering. That is my opinion which is shared by my brothers and wife as well so I know my wishes will be carried out. Others can not bring themselves to do this and that is their decision, I am not here to criticize other people's choices.

I believe that there can be meaning in suffering... but at the end stages of this disease, that suffering would be put onto our families as we would no longer be aware of it.  Is that important enough for me to endure all that in their presence?  I don't know the answer.  I have said repeatedly since my diagnosis that I hope a tree falls on my head way before we get to that point.  But we are not talking about whether one point of view is right and another is wrong.  We are talking about making criminals of people in desperate circumstances who choose how they wish to die.

For a very long time, people have been making this choice to end their lives before the end stages, but having to do it in secret and being penalized from leaving insurance policies, and being ostracized by society after their deaths for this decision, which again affects their surviving families... not them!!  It is not our decision to make for them.  But they should at least be free to make that decision without becoming criminals by doing it.  The practice will continue whether or not laws are passed about it.  To give people real dignity is to let them make their own death decision.  We need to think about our own death decisions.... not someone else's.  

Just my opinion.  

Great post Abuela.  I agree with 100%.

P.S.   Check your email.

Yes,  that is what I think you missed, John.  By virtue of the fact that people come to these boards exhibits that they have hope and are reaching out and trying to live each day to the fullest.

I honestly do not know what choice I would make.  I still hope that a tree will fall on my head or I will be struck by lightening.(and given the weather on the East Coast lately that is not out of the question)

 No one should be made to feel that there choice is wrong.  But the important thing is to give people the choice and not take it away from them because of our own feelings or opinions.  

I am the wife of a 60 yr old man who has had EOAD for over 5 years, and probably longer. He has been the love of my life (we've been married 30 years) and I come to these boards often so that I can learn as much as I can about this terrible disease and be a better caregiver. I'm usually on the spouse caregiver board, but tonight I thought I'd visit here. 

My DH has always said that if he ever got sick, he didn't want to go through a protracted decline. He has always said he wanted to die on his own terms. In our searching for answers after his dx, we came across an organization called Caring Advocates. You can find them online. They have put together a comprehensive program for dementia patients so they can make their wishes known while they are still able. It's not a one size fits all document, the patient can customize it to precisely fit their needs. The wishes are then written into a legal document, signed by the patient, their advocate and their doctor. There's much more to it than this, but long story short, we went through the process a couple years ago, used their My Way cards and my DH and I are comforted knowing that his wishes are clearly spelled out and on file. Of course he can change them at any time, but he hasn't. He's held these same beliefs since we met. 

After carefully reading the resulting paperwork, the doctor said he'd never seen anything like it, was very impressed, and signed immediately. (I was surprised.) I reminded him that it needed to be notarized, and he said no problem and called down the hall for a notary. Then we took the signed documents to our attorney who read them over and said they were very well written legal documents and he too was impressed.  

Since assisted suicide isn't an option for dementia patients, other avenues must be considered for those who wish it, and Caring Advocates has worked this out too. Of course, the patient must be able to do this themselves, since anyone assisting would be at risk, under our current laws.  

If this is something that is important to you, as it is for my DH, take a look at what they have to offer. We are in no way affiliated with Caring Advocates, my husband is simply someone who has been helped and comforted by their guidance. And I only hope that he goes peacefully, when it's time, in his own way.

It all comes down to how much of a religious belief you have in later years, to a reward or punishment after death. Most people who may have been taught religious beliefs when young, learn to understand life much better in later years and probably realize if there was a deity, their probably wasn't one that couldn't understand burden and quality of life issues. Making it comfortable to end their life.

Truly, it is just a final sleep, to which we never wake. The only difference otherwise, we learn of each morning anyway.

Regardless, this is only a personal matter. You have decided after fighting for life, no one should tell you when quality of that life, might require a decision to be made, it no longer exist, but you.

2dinky2,

Can you tell me how this document is different than a living will or advance directives? I completed both of those and appointed a POA for health and finances?

It's g so good to hear from you.  I'm sorry about the recent loss of your soul mate.  It must have been very difficult for you to watch his decline and yet give him up so early within his own timing.

May you be comforted in the coming days.  Thank you for checking back in with the boards and update us on the loss of your DH.

Blessings!