RSS Feed Print
what does death with dignity mean to you?
alz+
Posted: Tuesday, March 28, 2017 8:36 AM
Joined: 9/12/2013
Posts: 3608


I checked the final exit network site today and the words "death with dignity" struck me for the first time.

I have not witnessed an undignified death. I was a volunteer massage therapist for Hospice for years and never saw someone die an undignified death. sometimes the dying process takes a week or more like with my father, and recently my mother passed with hospice care in her own bed.

Anyone want to explain the what would make them choose to end their own life in order to feel it was dignified?

Is it my orthodox tradition that sees all death as a place to be humble and reminded we are not in control of everything, which is a blessing?

I am NOT insulting anyone who chooses this method but I never knew this is the motto - as if any death left to nature is undignified.


BillBRNC
Posted: Tuesday, March 28, 2017 9:11 AM
Joined: 12/2/2015
Posts: 1018


When, where, and how I so choose.
llee08032
Posted: Wednesday, March 29, 2017 8:11 AM
Joined: 5/20/2014
Posts: 4408


I always thought of death as one of the most natural processes of life. As natural as birth.

 It hit me that my step father was really dying whenI saw him being kind to my sister-in-law whom he always said he hated. He seemed to be trying to  work through the tension he had in his relationships with others and making amends to those whom he had hurt. He was stubborn and bitter at times. But in the end a peace came over him like I never saw when he was well and healthy. 

I think dying ith dignity has to do not only with being at peace with God but all that you leave behind. My worst fears about death, not unlike others I'm sure are not about me. Myworst fearsare about not being here for my loved ones and the impact my death would have on them. It has absolutely nothing at allto do with me. 


BlueSkies
Posted: Wednesday, March 29, 2017 12:15 PM
Joined: 2/24/2016
Posts: 1096


I THINK, but not sure that they mean leaving before you lose all your faculties.  You know, before someone has to put you in diapers and wipe your butt, bath you, etc....things like that.  That's what Sun did not want.  Dieing before you lose control of your own self.  A lot of people don't want to just waste away slowly.  Not advocating this just trying to help answer question.
grandmalynda
Posted: Wednesday, March 29, 2017 1:46 PM
Joined: 12/3/2016
Posts: 374


This is controversial I know,  but at this time this may be a viable option for me.  I cannot bear the thought that I will be totally dependent on others for my care.  I just can't see myself existing that way.

I'll keep researching and praying on it before I write my advanced directives.

--Lynda


BlueSkies
Posted: Wednesday, March 29, 2017 10:08 PM
Joined: 2/24/2016
Posts: 1096


Yes, it is very controversial, but I wish it were talked about more.  I thought about it for me when talking to Sun and thought that I wanted to do that too.  But the more I talked about it and thought about  it the more anxious I got.  Then my husband who supported me in whatever decision I made watched some videos with me on YouTube about early exit.  We even saw two people actually take their life ( drinking some liquid they were given).  My anxiety went out the roof then.  My husband even turned to me and said, "this doesn't feel right".    I told him it doesn't.   I decided I felt more comfortable putting my life into Gods hands and having Faith that he would take care of me.  But believe me it still doesn't change the fact that I have had bad enough days that I have not still thought about it, thinking I just can't handle it.  No way about it, no matter how you go, it's scary.
llee08032
Posted: Thursday, March 30, 2017 7:35 AM
Joined: 5/20/2014
Posts: 4408


Janet Adkins, an Oregon teacher who was dx with AD, was the first patient to avail herself of Dr. Kevorkian’s assistance. I think she was young and some said she was not that far advanced and her death was premature. Reportedly, the controversy surrounding Dr K inspired the hospice movement and the philosophy of palliative care.

I imagine that many PWD initially contemplate assisted death upon being dx. Making such a decision has to be a soul searching process. In my current state I would opt for palliative care but I have been known to change my mind and try to remain open to one of the most personal choices a person can make. Choosing to live takes courage but choosing to die must also take courage.


Michael Ellenbogen
Posted: Thursday, March 30, 2017 9:13 AM
Joined: 11/30/2011
Posts: 4460


As many know I am looking into changing the laws in this arena as I have a legal team working on this issue. The problem you have is one needs to end their life before they forget on how to do it. So because of that one must take their life much earlier than they would like to. They also do it so they don’t forget how. When one dies from not eating it can take 7- 14 days. Why need to go thru that when you can ended it in a few hours. Then there are issues of wanting to be remembered for who we are no and not who we become. How many caregiver hat what they are doing and what those folks have become. Who wants to be remembered like that. Then of course you have the financial side. Why should I leave my wife Bankrupt when she will need a lot more money when I am gone. That part is crazy. That is the road I am taking and I hope I can do it legally but if not it will happen any way without anyone knowing. If any family member is involved in the process they can be held liable and prosecuted by law. We should have choice just like someone with cancer and we don’t. 


BlueSkies
Posted: Thursday, March 30, 2017 9:45 AM
Joined: 2/24/2016
Posts: 1096


So many things to think about.  I think the financial burden is bigger than most people realize  I would not want to leave my husband poor after all our hard work to get ahead and have a comfortable retirement.  This is one aspect of the decision I hadn't thought about too much until recently with all the doctor visits.  So frustrating figuring out what is best.  I continue to pray to ease my anxiety over all these issues.  I do absolutely believe it should be the persons choice though and the law should be changed.  You shouldn't have to hide for fear of prosecution if you choose to early exit.  Just another burden put on the PWD and their family.
julielarson
Posted: Thursday, March 30, 2017 10:14 AM
Joined: 9/30/2015
Posts: 1155


When I was first coming to terms with what is going on with me I thought about taking my life but as I got used to it all I realized I do not want to go through taking my life.. I am settled down a lot more now and I know more than I did in the beginning.
obrien4j
Posted: Thursday, March 30, 2017 6:58 PM
Joined: 11/18/2016
Posts: 451


I  come from a long history of depression, stemming from a grandmother I never knew, to my own children. It breaks my heart with my kids because obviously, they got it from me. They have been way stronger than me, braving it without meds or therapy. I have been treating my depression for years and even at this point in my life, I take it just because I'll go into withdrawals if I don't. I have been very happy the last 5 years and never could have foresee dementia in my future, even though I was well aware that I was having memory issues. I never really thought about it getting worse and ending up in a nursing home. I just thought it was, that's all. That's not a type-O, just that it was a problem and it will always be, such is life. Never did I imagine that it would get worse, like really, really bad. The thought of it scares me to no end. Some people say, "Well, don't go there", but it's like it sucks me in every so often. I feel  I'm being lead down  this long corridor, it's dark and I just see people all over the place, rocking, staring, and drooling, we can't forget drooling, and I realize that I will be there soon. How soon, no one knows. How bad, no one can tell. We all got the short stick on  this one! So how do we handle this death sentence that really isn't a death sentence but technically, is a death sentence? I loved all those years that hypothetically speaking, I'd want to go into a nursing home. And hypothecallt speaking, I would like to consider early exit as a life choice. Why am I talking about this? Why aren't we just asking the traditional questions- you want to be buried or cremated? No, we've got to be asked if we want a nursing home or home? And then go thru the emotional discussion that it will bring. That will set me back a few days. And then we get into my physical needs and the need to place me in a memory,  care facility, the cost, the guilt, so very sad. We get to ask those questions like, would you like to end your life early? When you know the end is closing in,  bail before it gets ugly. No shame in that, you want to spare your loved ones from a life of sadnesss and dispair what could be more heroic than that. If we want  to live a fulfilled life, we need to live it while-heartedly, and to the fullest and not allow life's moments to rob us of time with the people we love. I will try not to allow anyone to upset me so that I remain calm and stress free in order to enjoy my family for more time. I will do what the doctors say, as if they literally had my life in their hands. But I can be proactive and choose a healthier lifestyle, who knows, that may give me a few months. You don't have to ask those questions, we do, and my soul aches to the very core. I don't want this life, we don't deserve this life, but there isn't any other place on the face of the earth that we'd rather be, than together.
obrien4j
Posted: Thursday, March 30, 2017 11:01 PM
Joined: 11/18/2016
Posts: 451


Oh, by the way, I forgot to mention that both my brothers committed suicide. What are the chances that 2 out of 3 take their own lives and the third has a terminal illness! What a hoot! I couldn't of written it better myself!
grandmalynda
Posted: Thursday, March 30, 2017 11:18 PM
Joined: 12/3/2016
Posts: 374


obrien, just wanted to let you know that I totally empathize with your circumstances.  It sucks and no one should have to worry about making the decision about how long we are are able to live in such an altered state.  I hope and pray that we will all be able to make this decision for ourselves.

My very best to all.

--Lynda


BlueSkies
Posted: Friday, March 31, 2017 2:26 PM
Joined: 2/24/2016
Posts: 1096


Obrien, so sorry to hear about your brothers.  That must have been hard for you.
alz+
Posted: Friday, March 31, 2017 4:41 PM
Joined: 9/12/2013
Posts: 3608


we all imagine what our end will be like, and no one would want to be trapped in a body in a nursing home being force fed or stuff.

The no food no water thing is my plan, and since I helped my Dad die that way and saw how our bodies secrete chemicals to make our passing easier, and his death was extremely peaceful and happy.

One thing I learned recently was my fear of being thirsty is needless. I wet the inside of my Dad's mouth which he liked and then he would sleep. Turns out we feel thirsty only in our mouths, so after 3 days even that passes. I am interested in being conscious during my death.

I am still working on "choice" as I can always find a dark cloud and think - in our healthcare system where everything is about money - it will expand to others being helped, and then earlier and earlier.

It is none of my business what other people choose and finally get that! Most likely I will die of something else anyway.

interested in how people find peace with this illness.


Mimi S.
Posted: Friday, March 31, 2017 6:05 PM
Joined: 11/29/2011
Posts: 7027


Jean,
Thanks for sharing.  As a survivor of two suicides, how do you feel about this topic.  And Please, only share if you are comfortable doing so.

chrisp1653
Posted: Monday, April 3, 2017 1:57 AM
Joined: 1/23/2017
Posts: 1327


Ouch ! This is a tough one. Not being in the position of desiring death makes it hard for me to imagine why anyone would want to do that.

I realize that in suicide there is often a component of depression working there. Is depression factored into this kind of decision ? Also, seeing what it was like when my Barbara's middle son engineered his " suicide by police , " I can tell you that although maybe he thought this was the best way out, it certainly was a load of trouble for all his surviving family members, and even nearly ruined one of the officers who had been forced to fire on him.

My overriding thought here is that a person needs to consider what his or her death will mean for everyone left behind. We may feel like we are only a drop in the river, but the fact is that the river only exists because of all the drips and drops.

This is certainly a topic where I am glad it's not ( for now anyway ) my decision.

 

Chris


dayn2nite2
Posted: Monday, April 3, 2017 4:20 AM
Joined: 6/20/2016
Posts: 3464


Well I do know that a bag over my head hooked up to a tank isn't a dignified death, so that's out.  Part of the trouble with taking yourself out is you aren't really remembered for who you were, more like how you died.
Michael Ellenbogen
Posted: Monday, April 3, 2017 6:13 AM
Joined: 11/30/2011
Posts: 4460


dayn2nite2 wrote:
Well I do know that a bag over my head hooked up to a tank isn't a dignified death, so that's out.  Part of the trouble with taking yourself out is you aren't really remembered for who you were, more like how you died.

I totally agree with you on this one. So many chose this option and I could never do it. I prefer to take some kind of sleeping pills.

 

To chrisp1653 - This should not be a surprise to the family as this should be something they are not surprised about when it happens. One should have dialog with all before choosing this path. That is critical. Just cannot get them involved in the process. 


MaryW
Posted: Monday, April 3, 2017 9:07 AM
Joined: 3/3/2017
Posts: 174


With all due respect, it has been difficult for me to follow this thread as people seem to be posting from every which way. However, I don't view death with dignity as having anything to do with suicide. 

Although it is an uncomfortable topic of discussion, having an Alzheimer's diagnosis means that I am going to die anyways, so the question for me, is what do I want that to look like?  For me, the question is one of suffering, and just how much suffering should I be forced to go through at the end of my life.  The internet is filled with stories of what the end of life with Alzheimer's looks like, and it is not pretty.  I cared for both my parents that died from cancer, and there wasn't much dignity at the end of their lives.

Mary


obrien4j
Posted: Tuesday, April 4, 2017 8:30 PM
Joined: 11/18/2016
Posts: 451


I have been staring at this question for days, and I still don't have an answer. I've rewritten this post several times cause it doesn't say what I want to say. As I've stated before, depression and alcoholism run ramp-id throughout my family. You would not be surprised to hear that one of my brothers is an alcoholic depressive and the other just depressive. I was convinced after my older brother's first attempt, that if he really wanted to do it, he would- and he finally  did. I would think that there are people who forgive (for lack of another word that doesn't come to mind!)the "way" someone died instead of remembering the person's life. 

So I can understand why my brothers would decide on ending their lives.I can feel their pain since I have felt it too. I know their hearts for I have seen the ache as it is breaking off pieces of their existence. They are at peace. It has taken me a very long time to accept that. I had no pity for my older brother who was just mean to me when  we were  kids. I was mad at him for killing himself- for all the changes we were going through because of him.

My younger brother got  sympathy from me. He was the kid beaten by his own mother, manipulated by his brother and to boot,  in a very serious truck accident. I felt very bad for him and I was so deeply saddened by his passing. But...he left 2 daughters behind feeling so terribly guilty for their dad's passing. His pain was great but their pain being without their dad, will last a lifetime.

I would never let depression take over me. I would fall but never that deep that I couldn't pull myself out of it.I have never been happier than I have been in the past 5 years. I do not want dementia to control me, but I want you to know that I have it just in case I get silly!

I would be lying if I told you that I never thought about suicide, especially since diagnosis. This is all so surreal, still can't get my head around it. If suicide was never an option before, because I would never do that to my kids, why would it be now? I know we  don't want to be a burden to our loved ones, but that's the way this thing plays out. Suicide this time, is a little different- we get to choose the when and how of our death. My question is- what about if you lasted another 5/10 years at your present stage? Wouldn't that be worth fighting for? Several people have not progressed so who's to say that you couldn't remain at that same stage for God knows how long. You could live a productive, love-filled life for however long God wants you here. Isn't that worth hanging around some more!

I am not an idealist, I know how this will end and I don't want to end my life this way. I want to be surrounded with family who love me just as much as they love each other. I have learned to live  one hour at a time. One of my first thoughts was to run away and check into a nursing home. Never did I think about committing suicide. 

My heart goes out to anyone suffering from a loved one's suicide- I know the pain and I'm so very sorry. I know the pain of the person who is taking his/her own life also, for I was there  once too. 


Michael Ellenbogen
Posted: Wednesday, April 5, 2017 7:19 AM
Joined: 11/30/2011
Posts: 4460


This is not for all folks and would never expect all to think this way. It should also not be for those who are depressed because that creates other issues. You bring out a good point that one may not progress once they reach a certain point. While that could happen, it is also more realistic that they will decline if they continue to progress far down the road in a few years. I know of a person who for over 10 years in in the worst stage. His caregiver only wishes she knew what he wanted. They had never discussed that which is sad. If she knew she would have helped him die by now but she just does not have the answer she needs. Not everyone who decides to do this acts on it as they become content and they don’t do it. But just knowing they could have was a peace of mind to know they had a way out. This will always be a touch subject but we should always allow one to make their choice.  We should also help them understand all the issue around the options. 


obrien4j
Posted: Thursday, April 6, 2017 8:02 PM
Joined: 11/18/2016
Posts: 451


You know, when you think about this, this is some DEEP S$&T!  We are talking so freely and so openly about death, OUR death-what we want, how we feel, who secretly would take that golden ticket and bail before it gets ugly. Never thought my faith in God would be pushed to such limits. I want yo scream" Why me?" I want to shout "Why now? " Where'd you go , God? How come me? Didn't you give me enough? I paid my dues and now that I'm happy,!truly truly happy, you take it away. How can I have any hope?
MaryW
Posted: Friday, April 7, 2017 7:37 AM
Joined: 3/3/2017
Posts: 174


When you have an Alzheimer's diagnosis, it is going to get ugly.  That is just the hard reality of it.  We are going to live through that ugliness, so the question for me is one of how can we do that with some shred of dignity?  I watched my parents die of cancer, and they suffered and were in pain, and there wasn't much dignity in any of it.

Mary


BlueSkies
Posted: Friday, April 7, 2017 10:10 AM
Joined: 2/24/2016
Posts: 1096


Yes, I want to get through this with as much dignity and peace as possible.  That's my goal.  And also with as little collateral damage as possible.  I sometimes worry about that more.  What will I leave behind.  Hopefully not a trail of pain and destruction.  I want my LO's to be proud of how I handle this disease.  Being I have a diagnosis of probable FTD I do not feel very hopeful.  I have read so many horror stories of people with FTD from CG's.  Seems those with FTD become aggressive and mean.  I hope and pray that doesn't happen to me.
obrien4j
Posted: Friday, April 7, 2017 10:33 AM
Joined: 11/18/2016
Posts: 451


All we all can do is the best we can. The unknown is so difficult to bear-I, at least, have been in control of my own life since I was 16 . Who know's where this can go- we could last 2 years or 10, anyone's guess. It can get pretty ugly and there's nothing we'll be able to do to change or fix that. It is what it is. Fighting it will only make us miserable and it will do absolutely no good. So I try to live as best and as much as I can today, although I have a ways to go to truly accepting this. I want to embrace my dementia as a part of me now and not fear it. I want to be proactive in my care and future- as long as I can.  And I want to pray really, really hard that I don't hurt the ones I love. I can help educate them so that they understand the disease and how to care for me. I can apologize now for what is yet to come.And I can enjoy my people and my life every day that I am blessed to wake up in the morning.